Sweet Charlie-Anne O' Mine

Every little thing she does is magic.

2012-03-04T12:43:00.003-08:00

(Charlie 32 months. My little beauty!)

February marked the two year anniversary of this blog. A blog I started so I could record every last second of Charlie's last few months with us. A blog I also started to better communicate our feelings and emotions regarding Charlie's devastating diagnosis with to our friends and family. It's since turned into a blog about a little earth angel with SO much life in her. A little girl who still smiles when struggling to breath. A little girl who woke me up this morning by 'punching' me lightly in the back and saying, "pow, pow, pow". A little girl who knows EVERY Treehouse tune there is, and sings along every time. A little girl who knows and appreciates a good Timbit...I've never seen anyone so happy with just a lick. A little girl who says, "I love you."

A little girl who's taught me anything is possible. Thank god for Charlie.

Happy belated 32 month bday Charlie!!

2012-02-23T15:44:00.003-08:00

(3 generations, Feb 11th 2012)

Happy 32nd birthday to the brightest little light i've ever met. Mama loves you Charlie. So, so, much.

Keep shining!!

xoxo

What else do you do?

2012-01-20T12:43:00.000-08:00

(Mama & Charlie 2.5, getting ready for bed)

For the past 6 weeks I have been working 2 jobs. One at a dance/fitness studio (which I've been at the past 7 months) and one at a restaurant. After a little soul searching I decided to quit the dance/fitness studio job. I love my employers and the members, but I just think it is time for me to focus more on Charlie and on what REALLY makes me tick. My plan for the next couple of months is to smother Charlie with love until It forces her to actually say, "OK mom, give me my space already!" I also plan on completing some fitness courses I've signed up for and training for the BMO full marathon which is this May. Im looking into the Gwendolyn Strong Foundation (http://thegsf.org/home/) so that I can raise funds for SMA in the process. I've actually found a big group of people who want to be a part of the team as well! So yeah, that's my short term plan.

When I was working at the restaurant a few weeks back I bumped into somebody I used to know. We chatted a bit and I told him about Charlie..."Yeah, she's sick....well, they initially gave her 3 months to live...it's been difficult, but she's amazing..." that sort of thing. After I mentioned that I was only working there a couple of days a week he asked, "What else do you do?" Ummm, pardon me? What else do I do?! What else do I do?! I forced a smile and mentioned the dance studio. But what I REALLY wanted to say was, "Ummm, I inject medication/food into my daughter through a tube in her stomach, I suction saliva out of her mouth every 5 minutes so that she doesn't aspirate or choke on it, I lift 30 pounds of dead weight all day long, I exercise her muscles so they don't stiffen and lose their mobility, I take my daughter to specialist appointments where they marvel at how far she's come for such a dark diagnosis, I wake up repeatedly throughout the night to check that her bipap (breathing machine) is attached properly and to turn her because she can't turn herself to avoid getting bedsores, I hibernate in the house with her so she can avoid getting a cold because it could kill her, I run and workout to relieve stress naturally...." I mean, sometimes I think Charlie's stuffed animals should come to life every morning and give her and I (and Matt) a standing ovation just for getting out of bed! And somebody has the audacity to ask me, "What else do you do?" Now, I realize he didn't mean it that way, but really, why is there so much pressure on mothers to do more?! When I was 13 I had a job at a hair salon where I washed old ladies hair. Did you know that when you get old your head gets covered in soft spots similar to a newborn babies fontanelle? I didn't. EVERY time I washed Elenore or Silvia's hair I'd worry my fingers would puncture a soft spot and I'd touch their brains (super stressful at 13!). Being a mother is 100 times more stressful than worrying about puncturing an old ladies soft spot! When will people REALLY get that there is no job harder than being a parent! Healthy OR sick!

In a way though, I am used to this life, It's all I know. So, just like many of my closest girlfriends, I am hard on myself and think I should be doing more, more, more. That's also why the "What else do you do?" comment affected me. Because despite everything, I long to be more than just my daughters nurse. Is it societal pressure? Is it personal pressure? I don't really know, but I think it's a little of both. I get jealous of other peoples education. I don't feel done academically. I want more. But, I just can't immerse myself in school right now because I never know what's around the corner for Charlie. I would hate to either a.) start school and put most of my focus/energy on that, and miss out on Charlie and something bad happens and I never forgive myself. Or b.) start school, Charlie gets a cold and is hospitalized for a month (or worse!), and I fall behind and can't finish my course/program. I feel like I don't really have a choice in the matter, and that makes me feel stifled and suffocated. Whenever we are at Children's hospital Charlie's main respiroligist always reminds me that SMA families lives are always at the mercy of this ugly disease and lives are put on hold because of it. I agree. BUT, at the same time, there is NO other option for me and Matt! We love Charlie, and we wouldn't want life any other way if it meant without her! Looks like we'll just have to get creative then.

Charlie turn 31 months in 2 days. She is still nothing short of amazing to me. And getting more and more so everyday. We love you Char. Happy Birthday big girl!

Never Surrender.

2012-01-10T11:48:00.000-08:00

The past couple of weeks have been a liiiiitle crazy...or I should say, this past couple of weeks I'VE been a liiiiiitle crazy. Matt and I spent some of the holidays together with Charlie and I found myself getting pretty emotional and sentimental. Let's just say Matt had to deal with a pathetic Cherie for a few days there...sorry about that Matt! I think it was an accumulation of several things going on at the time that set me off...the anniversary of Charlie's diagnosis, feeling overwhelmed with making sure all of Charlie's needs are met as single parents, and of course, my BRUTAL pms. Again, forgive me Matt.;)

Speaking of crazy and overwhelmed, I've been feeling pretty guilty lately that after all of Charlie's needs are met...stretches, getting her dressed (this is a difficult feat with a limp body that provides zero resistance) toothbrush/suction, gtube flushes, setting up her feeds, bipap, bathing (which is downright frightening now because she's so big and slippery) her appointments, and getting her in and out of her stroller, and in and out of the van and the whole strap down procedure, I'm tired and too exhausted to have 'fun' with Charlie. And MY BACK HURTS! Lifting 30 pounds up and down and around all day is taking its toll. I usually end up spending my days singing to Charlie. I got her a Barbie stereo for Christmas so I pulled out all of my old CD's (does anyone else miss CD"S? I miss having a CD stand to peruse and cover art with lyrics to read/sing along with!). Anyway, Charlie is really into Edie Brickell right now...all I have to do is press play on that CD and she smiles at the first hint of it. I sing this song 'Circle' to her over and over, and she hums along. And I think to myself, "If she dies someday, I'll never be able to hear this song again without hyperventilating and passing out." I think that about a lot of things. A lovely lady named Lindsay, whom I've never met sent me a necklace with mine and Charlie's names engraved on it about 1 1/2 years ago. I almost never take it off. Charlie likes it when I bend over her and slowly drop the pendant in her tiny open hand. Its not easy for her to grasp objects, so she gets all proud when she gently wraps her fingers around it and I pull away from her. Then I make hulk sounds and pretend I have to tug hard to break free of her strong grasp. We do this over and over. And while we're playing I can't help but think about 'later' and how this necklace will always have that memory attached to it. And I wonder If it will kill me to wear it when/if she's gone.

There are good days and there are bad days...Charlie and I were going to get our haircut the other day, I got her ready, lifted her into her stroller, brought her out to the van, got her in, strapped her down and drove to Yaletown, hurriedly suctioning her at every red light along the way. When I got there I had to park nose in to one of the spots so that I could pull the ramp out to get Charlie out. I unstrapped Charlie, pulled the ramp out, pulled the stroller out, closed the van up and dropped 6$ into the meter. A man who worked at one of the restaurants came running out saying, "hey, you can't park like that, you'll get a ticket." I snapped back, "My daughter is HANDICAPPED, how do I get her out then?!" He said, "Hey, I'm just trying to warn you." in a 'don't shoot the messenger' sort of way. I thanked him (under my breath) and thought, "fu*k it, try me parking Nazis...there are no signs saying I can't park this way, and I'll fight the ticket if I get one!". I walked a couple of blocks in the pouring rain, got into the salon, where I found out there was a mistake with my appointment and I couldn't get in. I was livid. I couldn't hide my anger. I said, "You don't know how hard it was to get her out of the house today." with a frustrated and defeated look on my face. But, it was an honest mistake and there was nothing we could do about it. So, I turned around, walked back to the van, pulled the ramp out, put Charlie in, strapped her down, and got in the truck. I could literally feel the rage rising up in me...it was about mid chest at this point, and rising FAST...soon my head would explode! Not at anyone in particular, but just at everything. Why does it have to feel so hard sometimes? I'm fu#king tired I thought...so tired. I started the van, and gave Charlie a suction before we headed out. It was then that I thought, "How in the hell will I get out of this spot?!" That's when I realized the 'no parking nose in rule' made sense. That same man from the restaurant came outside and asked me if I needed help backing up and he kindly directed me out. Charlie and I were on our way back home. I turned the radio on and Corey Hart's 'Never Surrender" juuuust started. Really?! Really?! And then guess what happened? I CRIED! THE WHOLE WAY HOME! To Corey Hart's profound and moving song, 'Never Surrender'. Yes I did. And I pictured the video the entire time...Corey running away from home in the pouring rain (I was also in the rain!) cold and popping up the collar on his leather jacket. And, when that sax solo hit...man that affected me... a montage of the past couple of weeks events flooded my brain. "With a little perseverance you can get things done...so if you're lost and on your own, you can never surrender...". It was obvious that Corey understood me. I got home, calmed down, and started fresh...all thanks to Mr. Hart. I'm sure its not the first time he's saved the day.

Happy belated 30th Charlie!! Officially 2 and a half years old!

2011-12-30T12:16:00.000-08:00

Charlie is 2 and a half years old! We were not supposed to see this day, but here we are! We thought we'd never even hear the words mama or papa. SMA affects ALL of the muscles...the tongue (for speaking) the lungs, the limbs, the esophagus (Charlie's on Zantac for this) and can cause facial paralysis. Also, Charlie's jaw needs to be exercised regularly because she is constantly clenching it closed; she does this to protect herself from accidentally swallowing her secretions which she knows she'll choke on if she does. We never take Charlie's smiles, leg wiggles (dancing) or gentle caresses (the BEST feeling in the world!) for granted. AND, Charlie is SINGING now! She learns new songs within hours and hums the tune perfectly over and over, it's really quite brilliant, and nothing short of amazing.

For this post, I'm putting up some of my favorite pictures and videos of Charlie from the past 6 months.

Smiles at grandmas house.
Christmas Jammies.
Cuddles with mama.
On our way to meet Santa.
Still smiling and thumb sucking with her new hand splints.
Baby cuddles.
Dancing with mama.
Cuddles with papa.
Brave girl.
Stocking stuffer.
My little elf.
Snuggles.
Toy Story (thanks Starlight Foundation!) with bf Dani.
Aunty Fatima brought this back from India for Charlie.

Reflection.

2011-12-15T09:43:00.000-08:00

(Charlie, 29 months, not too happy to meet Santa)

It's been a strange couple of weeks. It's the two year anniversary of Charlie's diagnosis and it's caused me to reflect...

On December 22nd 2009 we took Charlie for her 6 month shots on her 6 month birthday. That's when we asked our doctor the question that would eventually get an answer that would change our lives as we knew them, forever..."shouldn't Charlie be bearing more weight on her legs right now...is this normal?" Our doctors answer was, "Yes, this isn't right." And she scheduled us an appointment with a pediatrician for 2 weeks later. But we couldn't wait, and on Christmas day 2009, we brought Charlie to BC Children's hospital to get some answers to the questions we'd been having nightmares about for the 3 days since her 6 month appointment.

Of course, we knew something was up before that appointment. Charlie was beginning to slump and 'get lazy'. It was a discussion in our house more than once. I remember Matt running out and buying Charlie a jolly jumper after I told him I had went to my friend Christie's house and she had put her daughter the same age in one, and she jumped around like a bucking bronco in it. We put Charlie in hers and she just dangled there, like a marionette doll begging to be manipulated. I put Sesame street on my Ipod, just above her head, and she would force her heavy head up to get a peak at it. We convinced ourselves she just had a mellow demeanor and had become lazy. She had recently fallen in love with her thumb during tummy time and would pop it in her mouth whenever she could, it seemed to be the only thing she ever wanted to do...that's still true to this day!
Matt recently told me of how when he went Christmas shopping shortly before Charlie's diagnosis he was stopped in his tracks in front of the children's play area watching all the kids scream and run around. He said this is when he thought, "something is REALLY wrong with Charlie."

That night in the hospital, on Christmas day, they took blood from Charlie. That is when we realized that whatever was going on with Charlie was serious. Matt was holding her tiny hand and she cried when they took the blood, but she didn't even flinch. And when they checked her reflexes with the reflex hammer, nothing. We were sent home after a few hours and told that they were running tests and to bring her back if she got a cold. I remember spending hours researching what it might be. I remember feeling sorry for myself. I remember NEVER once though thinking that it was 'terminal' or untreatable. And I remember going to bed with Charlie one night, Matt was at work, and this intense fear rushed through my body...it felt like a flash flood of anxiety and panic and shear terror, and I seriously knelt by the bed, my hands in praying position, staring at a sleeping Charlie, crying so hard, begging god or whoever was listening, to please make her OK. The next day or so she got a cold and it was back to Children's hospital. 4 days later they told us their suspicions, and about a week after that they confirmed them.

The worst part of this experience would have to be the 3 days after we were told, "we believe your daughter has SMA type 1...she probably only has a few months left to live, we can't be sure though..." We went home and and walked around like zombies. Just crying every time we looked at her or each other. People dropped by and you could see in there faces that they knew there was nothing they could do or say to help, they could just be there. I will never forget laying down next to Charlie in bed, waking up every 1/2 hr and putting my hand on her stomach to see if she was still breathing (I still do this) and breathing a sigh of relief every time it was confirmed that she was. I remember waking up afraid of Charlie and running out to Matt in the living room crying so hard I couldn't catch my breath, because I felt guilty that I didn't want to sleep next to her because I was afraid I'd wake up next to her cold, lifeless body, and it scared the shit out of me...I begged him to please let me sleep on the couch (where the guilt of my thoughts kept me awake anyway). I had to actually ask the pediatrician, "How will she die? Will it be in her sleep? Will I walk out of the room one day, come back and she'll be dead?" As I asked him these questions I would hear them echoing in my head and think, "Is this fu#king for real right now? Really?! Did I just ask someone what my baby dying will look like? Holy shit."

Days became weeks, weeks became months, and against all odds, and MIRACULOUSLY, months became years. And here we are. We have spent more time in the hospital or at specialist appointments in these past two years than most people will in a lifetime. We have nursed our daughter back to health after being told many, many, times, "she's really sick, anything could happen at this point, one minute she can seem fine, and the next she's gone." And, "How far are you willing to go to keep her alive if we need to intervene?". We have changed g-tubes, sat through gj tube changes in radiology, learned to suction and tube feed, given chest physio, etc. We are Charlie's number one advocates, making sure she gets what she needs (we also work with A LOT of great people and resources who work so unbelievably hard for Charlie!) I have become more comfortable and confident in my role as Charlie's mother but I still get daily attacks of, "Oh my god she's going to die I can't handle this!" I can be out with friends laughing, and it will hit me like a lightening bolt, and for about a minute or so I'll be frozen with fear, I can't catch my breath, and I feel like I'm going to drop to the ground...and then it goes away.

We are not at all who we used to be, and never will be again. Situations like these change you forever. There definately is a 'silver lining' in all of this though...I can't always see it, but when I do it reminds me that Charlie is perfect EXACTLY as Charlie is...the sweetest, most gentle and innocent little life changer I've ever met.
It has almost been 2 years since Charlie's SMA diagnosis and she's still here. I have a little girl with one of the worst prognosis' you can get in life, yet she has the most positive, easy going demeanor I've ever seen in ANYBODY, ever. How is that even possible?!

Merry 3RD!! Christmas to my little angel girl Charlie. You are loved so much by so many, keep fighting.
xo
-the luckiest mama ever.

A Christmas Story.

2011-11-24T09:45:00.000-08:00

(Mama and Char, 29 months, at Canuck Place)

Again I've let too much time go between full posts. And again it's like the dam that usually slowly processes and releases information into the little reservoir where all things Charlie are stored, has collapsed and is full force spewing out my thoughts and emotions faster than I can even compute them. But I'll try...(this post was done over several days)

As I sit here home alone, drinking my peppermint tea with honey and waiting for my laundry to dry so I can fold it and go to bed, I'm feeling ripped off and lucky, all at the same time. Charlie is in Canuck Place right now. She's been there since Wednesday and comes home Sunday. We had booked a week stay there when I was scheduled for surgery, which I luckily didn't have to get, but we decided to put Charlie in for 4 days anyway because she has a lot of fun there. And, since we have officially entered hibernation season, we'll take any 'safe' excitement we can get! Anyway, as usual all of the staff have made us feel at home and Charlie is having a blast, but I can't help but focus on the kids that don't have much time left. Last night a boy who is obviously very, very, ill smiled at Charlie when he was being pushed by her in his wheelchair. Something my angel was doing caught another angels eye and made him happy for a minute. And, despite everything else that was going on with him, he could STILL smile and appreciate a moment. How do these kids do it?! After the boy was wheeled away I forced my bottom lip out in an attempt to blow upwards and into my eyes to dry up the tears that were beginning to form. I honestly feel that ever since Charlie was diagnosed I walk around surrounded by 'moments' and 'life lessons', trying to find meaning in everything and every moment with Charlie, and it's a mixed blessing. On one hand I feel fortunate that I can really appreciate and take in a moment, but on the other hand, sometimes I really don't want to think and ignorance is bliss...but my brain never shuts down! I'm sure even Sylvia Browne wishes she could turn off the paranormal sometimes...no matter how many times it got her on the Montel Williams show!

After I left Canuck Place, no amount of eye blowing was gonna stop the flood. I cried on my drive to work, got it together for a bit, and then again when I got into work. My co-worker was smart enough to know it wasn't a good idea to hug me or I probably wouldn't be able to reign in the tears again, which I fortunately did pretty quickly, and I kept it together for the remainder of my shift. But, when I got off work I called Matt from the car to tell him how scared I was feeling and how I just know that I won't be able to handle Charlie dying and how I felt so sad about all the other little kids who were sick. We talked and he told me how the boy that smiled at Charlie was really sick and had made a wish to have Christmas early (I'm assuming because it doesn't look like he'll make it until Christmas this year) What Matt told me next blew my mind...he told me that they were bringing in snow machines, Santa and his elves, loads of his family, presents, and Christmas dinner...just doing their best to make the perfect December 25th happen for the boy. And I broke down again. It's situations like these that double the size of your heart while simultaneously breaking it in half. So beautiful and so sad all at the same time. Sure enough when I went into Canuck Place the next day, It was snowing. And, when I left several hours later, the men responsible for the snow were still at it. It was so cold outside yet these men braved the elements to make sure the boy had his white Christmas. Just. so. amazing.

I have so much more to say, but I'll say it in another post. Right now, I just want to be thankful for what I DO have.

Bless you little boy. Thank you for the moment.

Happy 29 month birthday Charlie!!

2011-11-22T14:33:00.001-08:00

(Charlie and mama cuddles)

Happy 29 month birthday to my beautiful Charlie. I love, love, love you...never leave me sweet pea! xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxox

F*ck you SMA!

2011-11-14T23:02:00.000-08:00

(Charlie, the bravest girl I know, 28 months)

Charlie just got new splints for her hands. It was suggested that we put them on her overnight. But, she's a thumbsucker and she'd never have it. So, we put them on her during the day instead. And, of course, it's just one more thing my angel puts up with and excepts. Problem is, I can't. I took this picture after I prepared Charlie for bed the other night. I stared at her with tears in my eyes, RAGING inside my head. This is how she sleeps EVERY night...splints (hand ones during the day), breathing machine, suction machine, feed pump, and a leg skirt to avoid her legs flopping open froggy style which can cause hip problems. Look closely. She is STILL smiling through it all. I look at this picture and I think to myself, why?! F*ck you SMA!

Happy (belated) Halloween!

2011-11-04T10:30:00.000-07:00

I love, I mean err ummm, Charlie loves to play dress up. Here are just a few of her Halloween looks this year...

My little hunny bunny

My little Peg Bundy

My little barbie girl

My little senor-ita

Happy 28 month birthday Charlie!!

2011-10-22T13:47:00.000-07:00

(Charlie, pretty in pink, 27 months)

Growing up my mom called me 'Emma Clutz'. She said I didn't fall down the stairs, I tripped up them. If there was a piece of string in my path, it would drop me to my knees. To this day I don't exactly consider myself graceful. I've got weak ankles, a horrible sense of balance, I'm covered in unexplained bruises on any given day, and I look like an inebriated 5 year old playing dress up in my moms clothes when I wear high heals.

Being a clumsy person isn't exactly conducive with taking care of a totally dependant 2 year old that has zero room for error in her care, and that is FRIGHTENING.

I bring this up because I've had three nightmares in the past week that highlight the need for nothing less than perfectly executed care when it comes to Charlie's needs. It really is life or death. Has your baby ever fallen off the bed when you turned around for just a second? Well, that just. can't. happen. with Charlie. I dreamed that I was passing Charlie to Matt and she slipped through his arms and I screamed "Noooooooooooo" as she hit the ground like a 30 pound bag of sand. I woke up breathless and sweating and quickly reached over and put my hand on Char's belly to make sure she was breathing. After I got back to sleep I dreamed that I was at a party with friends and family...I had put Charlie down for a nap, and when I came to check on her there was a little girl sitting on the couch holding her all clumsily. It was a perspective I'd never really had of Charlie...she looked like a big flaccid doll in that little girls arms...it made me so sad. Then the little girl went to position her thumbs under Charlie's armpits in an attempt to sit Charlie up to face her...that's when my sadness turned to fear and hysteria...Charlie can't do that I thought, she needs major head support...I yelled "STOP" but it came out in slow motion, and too late. I saw Charlie's head slam backwards and that's when I jolted awake again. I grabbed my Iphone and wrote down my dreams in the notes section because I have a feeling these nightmares are affecting my days. I jolted awake again last night when I dreamed that one of Char's nurses put her suction too far down her throat and she wouldn't stop throwing up. I was freaking out because it is so dangerous for her to get sick because she can't swallow and is at high risk for aspirating because of it.

So yeah, stressful stuff. And I'm beginning to think that it's those dreams and thoughts that cause me to get stressed out, and have made me sick. I'm happy to say that my cyst disappeared and I won't need surgery anymore. But, I'm still losing weight and feeling sickly which I'm getting looked at, but I wouldn't be surprised if it was all stress related. How can someone have constant nightmares and it not affect their days? So, I'm currently working on a stress reduction plan.

We took Charlie for her bi annual check up with her respiratory therapists and her neuromuscular team this past Tuesday. They say she is doing well, and of course that's great news...but I notice that I get super bummed after these appointments. They are a reminder of how 'different' Charlie really is. We discuss cutting tendons, future back surgeries, being bipap (breathing machine) dependant eventually... It just drills it all home. I notice that I just sort of plug my ears, fidget, and lalalalalala it all out and Matt is always super immersed in talking to the doctors and leaves feeling empowered with a pocket full of knowledge...I'm glad one of us does!

Charlie is 28 months today! I said 28 months!! We're celebrating with a Max and Ruby marathon. Pretty nice little Saturday I'd say!

Happy Birthday baby girl!

xoxoxoxoxoxoxoxo

Overdue.

2011-09-30T09:31:00.000-07:00

(Summer lovin' with Char, August 2011)

Well it's time...time for me to attempt to sum up the past 5 months in a single blog post. Actually, I think I'll call this 'Part 1' for now...otherwise I fear Blogger will stop me a quarter of the way through and say, 'You've exceeded your daily limit of babbling, we recommend you save and continue at a later date.' Haha.

Hmmm, where to start...

Matt and I are managing our separation as well as can be expected. There have been some rough days, but they seem to get fewer and further between as more time goes by. I would even go so far as to say that we are actually becoming better friends as of lately. It's really hard on both of us to be away from Charlie though but we've been pretty good at sharing our individual 'days' that we have with Charlie, with the other, so that helps a lot. It's such a panicky feeling to wake up in the middle of the night, used to repositioning and checking on Charlie, only to see that she's not there. This has made me cry on more than one occasion. Sometimes I'll wake up without her and my head goes to dark places and I think, "this is what it will feel like forever someday, this exact feeling" and then I get DESPERATE to see her and harass Matt to please let me come over and see her asap, and he always obliges. He understands because he feels the same and does the same with me.

This transition into single parentdom has been awkward to say the least. In the beginning, and still a little now, I felt like two different people. One of me is a newly single lady who is trying to keep busy and find a new social life and possibly date, the other (and obviously more important) is the mother of a terminally ill child. I was/am having a difficult time finding a balance between the two. Obviously being out/dating is a nice distraction from some pretty heavy stuff going on in my life, but I just feel so guilty when I'm happy or distracted. I've never been a single mom before, even to a 'regular' child, so I don't know the protocol, and I'm putting a lot of pressure on myself to do it 'right' whatever that even means?! I guess what I'm trying to say is that I always want Charlie to be my number 1 and I feel conflicted/guilty when I feel happy being out with my friends. It's all just so foreign, but I guess I'll figure it out.

Charlie is cuter than ever! She is so musical! She hums/sings along in perfect tune to all of her favorite shows theme songs. It actually shocked me the first time I heard her sing "1-2-3-4, 1234 squaaare". I looked at Matt perplexed, "Ummm, did you just hear what I heard?!" He's like, "Oh yeah, she's been singing that for weeks" like it was no big thing. I've since noticed that she does that with all of her shows and a lot of my music as well, she knows when the chorus is coming! She's just a little parrot lately too, after we speak, she repeats. Of course it in her own special way, she can't really enunciate, but she tries her best. She's just brilliant!

Since Charlie's one 'mild' 13 day hospitalization for a cold, she has been healthy as a horse. I actually got sick again about a week after she was home and she managed to avoid getting it. Phew! Lately though, Matt and I have that impending doom feeling...we know Winter is coming and we know what that entails...cabin fever, hospitalizations, and close calls. Seriously just fu#king bums me right the fu#k out. AHHHHHHH!!!!!

To top it all off, and to continue being a Debby Downer, I have been having my own health problems as well lately. A few weeks ago I woke up bleeding when I wasn't supposed to be. Soon after I started getting insane cramping, which quickly became unmanageable. I tried to make Charlie's morning milk, but I couldn't stand and was nauseous and thought I would faint. I called Matt to come and watch Charlie and my friend Christie raced over to take me to the hospital (I LOVE that girl, such an amazing person!!). When they got to my house I was in too much pain to go to the hospital...just rolling around moaning like a sick walrus on my bed (in front of Charlie) waiting for the handful of meds I just took to kick in. About 20 minutes later they did and Christie was able to drag me across the street (yes, the hospital is just across the street from me) to emergency. I got checked out by a doctor (NOT a nice one at that) who ordered an ultrasound for the next day. I got the results 3 days later and was told that they found a cyst the size of a tennis ball and that they wanted to do tumour marker testing on me and a biopsy of my uterus and then set up surgery for the cyst. Awesome. All I could think about is "cancer mom takes care of terminally ill baby" I know, such positive thinking! Anyway, I realize cysts are common among women but when you've received the worst news a person/parent will EVER get in their life, sometimes your glass is half empty and you become a bit more skeptical. I remember right before Charlie was diagnosed I was googling "floppy baby syndrome" there were seriously about 2000 reasons/causes of it...I imagined every single one of them being a possibility, EVERY single one, EXCEPT this horrible one called "Werdnig Hoffman disease". "Nope, don't need to bother researching that one any further...that's way too serious, that's terminal, that's not what Charlie has, I know that for sure." But, that's what Charlie had/has. It's another name for SMA type 1. I SERIOUSLY considered 1,999 other sicknesses/diseases but not that one.

So, I've learned my lesson. Expect the unexpected.

Two days after I got my ultrasound results I was to take part in the Canuck Place Adventure Challenge. After talking to a few doctors I was told that rupture of the cyst with strenuous exercise is a possibility, and would be extremely painful if it happened. I did it anyway...sort of. I kayaked and rode my bike about 8k before I started feeling pain in my lower back and seeing black spots. I told my friends I didn't think I should go any further and they took me to the paramedics where I spent the rest of my day. I cried a lot. It was the first time I couldn't finish a race and I felt like I failed. But I know it was for the best. Through my friends, family, and my job, I still raised about 4500$ for Canuck Place, and that's the most important part.

Still, I haven't been feeling like myself. I've been tired, nauseous, losing weight, and VERY moody. 3 days ago I left a friends bday because I was feeling really awful, I came home and crawled into bed where I shivered my nauseous night away. I woke up in the morning to drag myself to Shopper's to get some Gravol and on the way back my legs just gave out and I fell out of my shoes and into traffic and sprained my ankle BAD. I immediately made a doctors appointment to nag her to figure out what's going on with me and get my ankle looked at. It was someone filling in for my doctor and she told me she thought that my body was making too much estrogen and it was making me feel sick and emotional and sent me for an x-ray because my foot now looked like Shrek's. She also said, that it would actually be in my best interest if the cyst burst "it will be extremely painful for a while, but then it will be over." Hmmm Comforting. My ankle was just sprained. I went home called Matt and told him what was happening and that I couldn't take care of Charlie like this but that I was really craving her and wanted to be with her and was scared. He invited me over and took care of both of us. At 3 am I awoke so sick, I yelled for Matt, he came in and then went to get me a barf bucket. While he was gone I went to sit on the toilet and I guess I fainted and fell face first onto the bathroom floor. I woke up with Matt calling my name asking me if i was OK and I told him to call an ambulance. I went to the ER where a nice doctor got me an appointment with an internal medicine specialist for next week. So, I'm a lot closer to knowing what the hell is going on with me now. It's so scary to worry that something will rupture or I will faint while holding my 30 pound daughter that can't take care of herself, and would quite possibly die if I dropped her because she has zero head control.

Things are a little more stressful in some areas, and a little LESS stressful in other areas right now. And that's to be expected. But, the most important thing is that Charlie is 27 months, healthy, and getting smarter and more talented everyday. I'm happy if she's happy.

To be continued...

Happy belated 27 month birthday Charlie!!!

2011-09-25T10:59:00.000-07:00

My little miracle is 27 months! I'm still trying to get myself together to do a proper post. In the meantime, here's a little vid of my special girl.

Keep making mama's heart beat Char. xo

Canuck Place Adventure Challenge

2011-08-26T21:11:00.000-07:00

(Charlie, last September, rooting me on at the Adventure Challenge in Deep Cove, North Vancouver.)

Hey Everyone!

Just wanted to let you know that it's that time of year again...time for me to run, kayak, and mountain bike for Canuck Place Children's Hospice! If you can, please sponsor me at:

www.adventurechallenge.ca.

I'm under Charlie's Angels/Cherie Ehlert-Cox

Thanks!!

Happy 26 month Birthday Charlie!

2011-08-22T23:38:00.000-07:00

(Mama and Char, almost 26 months, in the park)

I keep planning to sit down and write. But life is busier than it once was, and times have changed. In the past few months Matt and I have separated, I found a new apartment, we finished renovating our condo we shared and put it up for sale, I got a new job, and we've been learning how to 'share' Charlie. I think we're beginning to get a grasp on our new lives, but it hasn't come easy. It's hard to be without Charlie, really hard. But, at least we both know that we're equally madly in love with her, and that she's in good hands when she's with the other parent.

As for Charlie's summer cold...she was in the hospital for 13 days, the first few bad, but otherwise her most mild/well fought off cold yet! Her ICU doctor told us that she "can't remember the last time a child with SMA type 1 handled a cold that well, and with out antibiotics...she handled it very, very well." That was amazing to hear! It was an especially difficult hospital stay for Matt and I to deal with though because Charlie got sick one day after Matt had left to visit his family in England. He felt helpless being away, and I felt overwhelmed and afraid that I may have to make some serious decisions on my own. But luckily everything worked out, and Charlie was home after less than 2 weeks, her shortest hospital stay yet.

Yesterday morning I shot up out of bed and instantly started BAWLING. I'd been having nightmares all morning that Charlie's nurses were dunking her head when bathing her while I was yelling, "No, no, you can't do that! She can't cough it up, STOP!" In scene 2 I was with my friend Lindsay and some others that I can't recall...Lindsay was holding Charlie and she started drooling...and her eyes were going red, it was obvious she couldn't breath and was choking (a look we see on a regular basis) Lindsay put her down frantically while I clumsily tried to suction her mouth...I was shaking. After I cleared her airway I fell backwards and started crying out uncontrollably, "I can't do this anymore guys, I can't do this!!" That's when I woke up, had a flashback of the entire dream within 10 seconds, felt guilty that I felt that/said that, and started BAWLING uncontrollably in real life. It was exhausting and set the somber tone for my day. BUT, I must admit, I had PMS, which ALWAYS makes the difficult to deal with, IMPOSSIBLE to deal with.

I'm tired. I'll be back. There's so much more to purge, but the energy is not there yet. To all of you who emailed me to ask how Charlie was, thank you!! It really is a great feeling to know that you care and you wait patiently to hear how she is. And rest assured, she's still fighting, and getting more and more beautiful and SMART, with every passing day!

Happy birthday beautiful!

Back soon.

2011-07-28T23:44:00.000-07:00

I'll update very soon, I swear! Charlie just got home on Monday after 13 days in the hospital due to a cold she caught from me...in JULY! Leave it to me to think we're scott free come summer! Anyway, I'm super duper beat and just glad to have my girl home, I'll post what's been going on in the next few days!

Happy belated 25 month birthday Charlie!

2011-07-28T23:05:00.000-07:00

25 reasons I love her so...

Birthday love.

2011-06-30T23:48:00.000-07:00

(Charlie smelling her birthday bouquet)

Charlie had a great 2nd birthday party despite bad weather and a last minute location change. I just wanted to say thanks to all of our friends and family who came out to show Charlie love. We're lucky to have you in our lives. Thank you!

Happy 2nd Birthday Charlie!!!

2011-06-22T13:39:00.000-07:00

(Charlie, 2 years old, striking a pose)

Two years ago today I gave birth to a beeeeeeautiful baby girl. She was (is) absolutely perfect! 6 months later we were told she only had a few months to live...then she turned 1 and we were told, "if you take really good care of her, she could be here until she's 2" and here we are.

Charlie, you're a tough one. You have changed me and my life in ways I could never have imagined. I seriously could not love you anymore than I already do. You are the epitome of true love and perfection. I sleep with an earth angel every night, not many people can say that. I am so blessed to have you.

I wonder what the doctors will say now.

xoxoxo <3<3

Happy 23 month Birthday Charlie!!!

2011-05-22T15:11:00.000-07:00

Fragile.

2011-05-21T15:37:00.001-07:00

(Me and Charlie, 22 months, on the swing at Canuck Place)

I haven't written in almost a month. Well, I have...but I just couldn't seem to finish an entry. This isn't unusual for me, especially when I'm feeling extra emotional and overwhelmed, which I have been. It's crazy, whenever I'm feeling this way, I always get self conscious and think I should quit my blog, or at least privatize it...I start to obsess that the world (or whoever reads my blog) have front row seats to the 'Unravelling of Cherie Show', and my cheeks go red and I'm instantly mortified. But, EVERYTIME I've decided it's time to quit, something happens to remind me why I need to keep writing.

Last week I got a message from a woman in the States who follows my blog, It read simply: "Hope you guys are well." Just 5 little words, but it meant the world to me and reminded me that people care, STRANGERS care. And that was all I needed. Two days later Matt and I took Charlie to the Aquarium where they were holding an event for Canuck Place and Children's Hospital kids, on the way there I told Matt how I was thinking of quitting my blog and how that woman had changed my mind, he agreed that it was important to keep it up. By the time we hit the line up to get into the aquarium I knew it was going to be a BIG lesson in composure. All these little kids who have battled things most of us adults could never imagine having to deal with. The worst part for me was that Charlie was so happy to be there yet my tears were still just dangling there on the edge, threatening to jump any second. I couldn't even be happy for Charlie, I was just so caught up in my own emotions. We walked around, checked out the Charlotte Diamond and dolphin shows, and bumped into old Children's Hospital friends and fellow Canuck Placer's. I'd almost reigned in my tears when I saw a family there that I recognized from Canuck Place, their teeny tiny baby barely holding onto this world...I motioned for Matt to look. Like me, he couldn't stop staring, and I knew his mind was going to the bad places mine was. I mumbled, "I need to go...now." He said, "Yup, OK." and we did a quick spin around, and headed out.

I couldn't wait to get to the car. I had it all planned out...I was going to get Charlie all buckled in, get in the car myself, and commence a big ugly cry, snot and all. I could see the car, It was 10 meters away, when a woman yelled from behind me, "Hey! I know you." I didn't recognize her. She came closer and said, "Charlie?" and looked down at Char. I said, "Yes." A little confused. She said "The Internet, I know you from the Internet, my counsellor who was your counsellor recommended your blog." She then said, "Your blog is so beautiful, your words are SO true...I feel like it's my thoughts exactly, your honesty...oh my god..." I looked at the car that was only 10 meters away from me and I knew I wasn't making it back there with the dry eyes I had barely clung to for the past hour and a half. We both started bawling and spewing our private and painful thoughts. I walked to Ani's car and met her 5 year old son who has a severe form of Cerebral Palsy because he had a stroke in utero. He was beautiful, but like Charlie, a lot of hard work emotionally. It was definitely a profound moment in my life, and yet another reason to keep blogging.

A couple of weeks ago we took Charlie for a swallow test. We just wanted to see where her swallow was at. We'd been giving Charlie licks and tastes, we just wanted to know if she could perhaps handle a little more? In the waiting room one of Charlie's doctors came to say hi and asked why we were there, we told her and she expressed great concern and told us, "you have to be VERY careful with these special kids." Matt and I were second guessing the testing but she assured us that Charlie would be very taken care of during the testing. And she was. But it only lasted about 30 seconds. We strapped Charlie in an elevated chair, put x-ray machines on either side of her head and I gave her about 2ml of water with barium in it while they recorded the track it took down her throat. It wasn't good. They played the video back to us where we could see that Charlie was struggling BIG TIME, to swallow the water. They said they worried that they could see some of the water going down the wrong tube (aspirating) which pretty much is EVERYTHING we are trying to avoid with Charlie because it goes to the lungs causing pneumonia/drowning in ones own lungs. We left radiology and I bawled. Matt said, "Cherie, you had to expect this, right?" And yes, I did, but when you're told at 6 months of age that your baby only has a few months to live, and a year and a half later she's still here, you kind of start to think she's tougher than she really is, especially when you have nothing to compare it to. And that's how I felt before the test. I felt like I'd be sucker punched after the test. Expected? Yes. Does it hurt any less? No.

Well, Matt and I are now living separately. Its been a little difficult working out our custody plan with Charlie. We both just love her so much that we want to be with her all the time...especially waking up and going to bed with her. But, so far it's going as well as can be expected for something so fresh. BUT, being separate we've both noticed how important our nurses are to us. I have spent a lot of time trying to use as little hours as possible for a couple of reasons...one being that as her mother I feel like I should be able to provide all her care, ESPECIALLY when I'm not working yet, Also, I felt like if Matt and I are sharing custody, we should be able to get away with using less hours because we're both getting 'breaks' during the week. Matt's always been more of an advocate of the nursing, and I'm beginning to understand why. Charlie is 25 pounds of dead weight ( I hate using that term, but it's the only one I can think of) She seems to be getting weaker lately and several times a day she starts choking on her saliva and we think its the end (the worst feeling EVER, especially when you're dealing with it alone) and she can't really be left out of ones sight anymore in case she chokes. She just seems so fragile lately. Even getting her in and out of the car now is a scary production. Its a backbreaking effort for us and uncomfortable for Charlie who usually cries, creating more secretions, which puts her at a greater risk for choking/aspirating.

Speaking of suctioning and secretions, On Thursday I went for a walk to Granville Island with Charlie and my friend Sandi. About 20 minutes in, and finally at the bottom of a VERY steep hill, I noticed Charlie needed a suction. Charlie now relies on her suction, it could mean the difference between life and death if she doesn't have it. Anyway, I went to start it and noticed that I had forgotten a very important piece to it, it wouldn't work without it. I freaked out! What the hell do I do?! Omg!! I remembered that I had a portable emergency suction, and found it and used it for my first time ever. It required me to put a tube into her mouth, while I manually sucked on another tube...like sucking a really thick milkshake, but the saliva stays in a little vile attached to both tubes. My parents were meeting us at Granville Island so we hurried there and waited for them. I continued to suction Charlie with this portable device and I'm sure people were a little grossed out. All I could think was, "How the hell did this end up my life? I'm siphoning spit out of my kids mouth every five minutes in public." I ESPECIALLY thought that when I accidently let the little vile overflow and sucked up all the old warm, thick saliva into MY mouth! I learned my lesson, I'll never let that vile overflow again!

We recently spent 4 days at Canuck Place. Man I love that place! EVERYTIME we're preparing to go to Canuck Place and I pack Charlie's bags and round up all of her equipment, I think to myself, "Really? All of this work to go a few blocks down the road and possibly get ourselves and Charlie all outta sorts?" And EVERYTIME I'm proven very wrong. It only takes about 10 minutes to feel completely at home there. Matt and I are still shocked, yet weirdly put at ease when we hear a feeding bump go off that isn't ours. Finally! We're among some of our kind!

We booked our stay at Canuck Place so that Charlie wouldn't be at home while I was packing and the house was in chaos, and I'm really glad we did. Emotions and boxes were all over the place and Charlie didn't need to be home for that.

While we were staying there I noticed that one of the nurses I take crossfit classes with at Canuck Place, had a foot injury. I asked her about it and she said she had hurt it running and then said she wouldn't be able to do the BMO 1/2 marathon the following Sunday. She then said, "Why don't you do it? You can do it, you've been training enough...take my place." I gulped and stuttered nervously, "Ummm sure." And that was that. I had two days notice and was all of a sudden running a half marathon (21.1k) And I did it! And I was on FIRE! I DESTROYED it! I ran it in under 2 hours non stop. I was high for days after. Thanks for that Sandy!

Tomorrow is Charlie's 23 month birthday! UNBELIEVABLE! I'm sooo looking forward to her 'terrible two's'!!

Happy Birthday Princess!

Mine. All mine.

2011-04-24T12:52:00.000-07:00

(Charlie, 22 months old, with her baby)

The other day I had a discussion with my friends about my incessant, irritating need to either keep reminding them to wash their hands, or asking them over and over again, "did you wash your hands?" or "who's glass is this one?" or "are you sick? why are you coughing?" My friends know to avoid me if they are sick, they never risk it, and they always wash their hands until they bleed when they are in my company, but I still can't stop myself from constantly nattering my obsessive compulsive thoughts out loud to them...for some reason I just have to say it out loud, over and over and over again before I can relax a bit. I can't even stand myself sometimes, so I can understand how it might get on their nerves or get a little old to them, but thankfully they are understanding and bite their tongues and put up with me.

When Charlie was diagnosed we were told to be extremely careful with her and to do our best to avoid colds because it would be a cold turned pneumonia, or that caused a mucus plug, that would ultimately be her end. The pressure to keep Charlie healthy felt like we were constantly playing an intense game of Operation that Charlie's life depended on, trying not to touch the sides with those tweezers, while trying to retrieve that skinny little leg bone...just a brutal amount of pressure to not screw up! I mean, Even the healthiest people get sick at least a couple of times every year...we were left to wonder, "how the hell do we avoid the unavoidable?!" We became INSANE with our tactics to avoid sickness..and our anxiety was through the roof because of it. I'd lay in bed at night and suddenly remember how I forgot to sanitize my hands after touching the menu at the restaurant that day and be frozen with fear, wondering if I'd just opened the door to the beginning of the end. I'd hold my breath for the next 4 days, thinking every sneeze or scratch in my throat was that menu's fault.

Matt and I were also having a hard time finding our voice when it came to strangers touching Charlie. The day Charlie was first diagnosed, after we got out of the hospital, we went and met our family at a restaurant (I know, weird...it was a mistake, we just cried and cried at the table, until we realized we needed to go home and be left alone to rifle through the terrible news we'd just been given) but, before we lost control of our emotions, a server came running over and literally plucked Charlie from my arms and bounced her on her hip...all I could see was the word GERMS! in florescent green escape her mouth and find its way into Charlie's. But did we say anything? No. And we beat ourselves up for it afterwards. Situations like this happened many times before we decided we didn't care who's feelings we hurt or how uncomfortable we made a moment anymore...making nice and being polite wasn't worth the possible

consequences. We have learned that we can't control what others do but we can do our best to control our own environment, and if that means sanitizing our hands right after we shake hands with you, before you even walk away, so be it. Our anxiety has since dissipated because we have become more confident in our approach to protect Charlie.

Now that we're finally confident in making situations awkward, we've been working on using Charlie's machines in public without feeling like we're ruining someones lunch. Whenever we leave the house now it's almost guaranteed that Charlie will be hooked up to her feeding tube and need a suction or two while we're out. It's only been in the last couple of weeks that we've pulled out the suction machine in public...and it's LOUD, it pretty much sounds like we brought our blender with us and are mixing up margarita's...so there is no sneaky deaky suctioning going on in public. It's not the sound so much that makes me uncomfortable...I just feel like I might be ruining someones dining experience if they hear the sound, look over, and then see me suctioning saliva out of my child's mouth. I know I shouldn't care, but at this point, I still do. As for Charlie's feeding tube, yesterday we were at a restaurant and its alarm was going off telling me it was plugged...in order to get it going again, I had to unhook it from Char's belly and run some milk through it onto my napkin and plate...again, I just feel like I'm drawing unwanted attention to us and possibly ruining somebody's dining experience. I KNOW, I shouldn't care, but I do. It bugs me that I do...I'm not embarrassed, I'm just uncomfortable with the unwanted attention and people who don't know Charlie's situation and are left to assume or judge. But, I feel that I owe it to Charlie to be loud and proud of everything she is and feel like I'm letting her down when I don't speak up for her.

On Friday I took Charlie for a walk to the Aquarium. On our travels I stopped at the Gap, Safeway, and Caper's. Charlie was looking pretty cute that day in her fur coat and sparkly shades so she was attracting a lot of attention everywhere we went. I was told three times that day that she was just "so calm" as well as, "I bet she's just all over the place when she's not sleepy." I just smiled and nodded. The woman repeated herself again, "I bet she's just all over the place when she's not sleepy...right?" I then muttered, "nah, not really, she's sick." And, it got quiet and uncomfortable and that was that. It's not the questions that bug me, (again!) it's me not wanting to make people feel uncomfortable with the truth of the situation. I love that Charlie looks just like any other beautiful almost two year old, and I know that's why the regular run of the mill, from one mother to another, questions...but, sometimes I wish it was just all out in the open so there was no weirdness, and we could all just move along now, and instead focus more on the little miracle I get the pleasure of calling mine...all mine.

Happy Easter from my little hunny bunny!

2011-04-22T16:47:00.000-07:00

Charlie dressed in her Easter best.

Happy 22 month birthday Charlie!

2011-04-20T22:50:00.000-07:00

(Charlie, almost 22 months old, enjoying tub time)

In two days Charlie turns 22 months old...and, in two months, two years old! I love her, I love her, I love her SO much! I hate this situation we're in but I love that because of it I NEVER take anything Charlie does for granted...everything she does is AMAZING and nothing short of a miracle! Charlie is now saying ball, bubbles, more, mama, dada, who's there, uh-oh, and bye! And now because she's been tasting foods, every time we're out a restaurant she'll hum mmmmmm the entire time we're eating, over and over, not so subtly hinting for a taste. We don't really like to feed her in public because it promotes salivation and she can choke if she's not laying down, so we look like big meanies eating in front of our famished kid that's begging for a bite. But, we don't mind how it looks, we actually love it, and smile with pride, we never ever thought we'd see this day, so she can mmmmmm all she wants! We never thought she'd really talk either, and to be honest, as much as I know that SMA does not affect the brain, It's easy to forget that and think that she doesn't understand what we're talking about or what's going on because she can't really physically reply to us or point at what she wants. When Charlie does something new for the first time, my heart feels like it's going to explode and spew confetti out of my chest...I just want to throw my arms up in the air, scream HALLELUJAH and do a rain dance or something. This kid is sooooo (for lack of a better word) fu#*ing amazing!!!

Sooooo, I found an apartment and I move in ten days. It's bittersweet. Matt and I have both been uptight and I know its because we're worried about not waking up with Charlie every single day. Just thinking about it now breaks my heart, bad. Even if it sounds lame and co-dependant, she's my best friend and pretty much the only person I wanna spend all of my time with. We need each other. But, I know Matt loves her just as much as I do and we're gonna work out a plan that works best for all of us. We're only going to live minutes away from each other so distance won't be an issue. It'll all work itself out, we're just afraid of the unknown.

I recently did the Sun Run and a run for prostate cancer and have plans for another 10k as well as the Canuck Place Adventure Challenge again this year. Since training for the Adventure Challenge last year I've become completely smitten with fitness and group fitness activities. I'm in a running group with a couple of girlfriends, and I go to Canuck Place every Thursday for Crossfit with other parents in similar situations, although we never really discuss our kids, it's just our time to work on ourselves, and I really like and appreciate that. Exercise makes me feel so good in such a stressful time, If I miss a day I feel like I'm melting and worry that I could slip into a funk...I'm addicted to the endorphins. When Charlie was diagnosed something snapped in me...my slogan became: "We Don't Have Anything If We Don't Have Our Health"...and it's true. Who cares how much money you have or how big your house is if you're sick? What good will it do you? That and I need to be fit to properly take care of Charlie...she's about 24 lbs now and cannot support herself at all so just transferring her or putting her in the stroller or tub requires strength, never mind when I wanna pick her up to dance with me! Charlie comes running with me too and she LOVES it! I think she feels like she's running...she sings along to my ipod the entire time and grins from ear to ear, her big front teeth protruding...it's so awesome that we can have that together. I'd really like to work something out where she could come bike riding with me too, but I'm not sure how that would look because I have to be able to keep an eye on her at all times, but I'm working on it.

Life is changing, and it's scary and stressful. BUT, Charlie's happy, growing and thriving, and that really helps keep things in perspective. We're so lucky to have her.

Happy Birthday Charlie Barley!! I love you to the moon and back!

Thank You!!

2011-04-19T12:40:00.000-07:00

(Charlie 21 months, showing of her pretty toes)

This past Thursday we held a fundraiser at Republic (a bar downtown that Matt works for) with the proceeds going towards a van and its special alterations, such as a lift, for Charlie. We had sent an open Facebook invite out 4 weeks in advance and the outpouring of compassion and support was overwhelming! At the urging of people who could not attend, Matt set up a paypal account and the donations just kept coming in! People we have never met "feeling moved" to contribute. We were already half way to our goal before the fundraiser even started! Matt's employers were amazing enough to give us all of the proceeds from the front door that evening, which was enough to make our goal and purchase the van! We want to thank everyone who donated and/or came out to support us/Charlie that evening, including the Donnelly Group, Matt's employers, who provided the space, the staff, had thank-you cards made for us, and supplied free drinks with everyones cover charge, with 100% of the proceeds going to us. We have been humbled by everyones generosity and selflessness.

Thank You!!

Special bananas.

2011-03-27T18:13:00.001-07:00

(Charlie with Daniel Sedin, in the newspaper advertising the Canucks For Kids Telethon)

On Friday I took Charlie for an appointment at Children's Hospital to have her gj-tube looked at because its been acting up a little. Everything was fine and since I'd paid for two hours of parking I thought we'd stop and have a coffee and check out the kids together. It's a bit of an ordeal to get Charlie in and out of the car, so when we actually do, I want to make the trip worth it. Anyway, as we were getting ready to head out, a lady noticed Charlie's gj-tube and came over to tell me that her son used one until he was 2 1/2 years old. We chatted for a bit and she asked me when Charlie would be off of hers, and I explained that she would always have it...she then looked at me and said, "It's sure something having a special needs child, huh?" I nodded in agreement and said, "but a lot of it is good." She looked at me with shocked, wide eyes and seemed like she was either confused or suspicious...her expression made me wonder if I was lying to myself...am I the comedian who is crying on the inside? I self consciously muttered that my perspective on a lot of things has changed for the better. She just looked at me and said, "Im not there yet." And I really respected her honesty. Her two boys, that she had mentioned earlier were 3 and 5, then ran up to Charlie's stroller to check out the goods when I noticed that her younger son appeared to have Down Syndrome...I was left to wonder what her journey looked like.

That experience got me thinking. Am I being honest with myself? Lately I've had two interesting dreams about Charlie one where she was crawling and I kept ECSTATICALLY exclaiming "OH MY GOD, OH MY GOD, OH MY GOD, while my eyes spilled happy tears, and one where I was bawling and pouring my heart out to a therapist about how difficult this situation is on me. But, in 'real' life I feel pretty OK most of the time. Yes, I have days where I actually WANT people to feel sorry for me, and yes, there are days where I just go ahead and feel sorry for myself if no one else will. But, I'd honestly say that's only about 1/4 of the time. I get flashes of 'after Charlie' and I'd consider that to be in the 1/4 of the time catergory, but most of the time I'm just so completely happy with her and EXACTLY what we have and what she is. When you're told you only have three months left with your child anything above and beyond that feels miraculous and amazing. I also think it has a lot to do with the fact that she is our only child and we don't really have a lot to compare her differences to on a daily basis...she's just Charlie, and she's special. I will say that her differences are definately highlighted after a day out with 'normal' kids, and those are usually the moments that I tend to feel sorry for myself.

One of those moments happened this past Friday. Matt and I took Charlie to Science World...we lasted 11 minutes. We walked in, paid 30$ for two adults, and went to watch the 'fire show'. All of the bench seats were taken so I had to stand and hold Charlie. She was hooked up to her feeding pump and I lifted her limp body out of her stroller, her head tilted and squashed sideways into my chest. Charlie is about 25 lbs now and cannot support herself at all so it is extremely difficult to hold her for extended periods of time...she also breathes through her stomach so holding her against you, which is the only option while standing, puts pressure on her stomach making it more difficult for her to breath. It became obvious to the people around us that this little girl was sick, yet NO ONE offered us a seat where she could have sat supported on my lap and seen the show. We put her back into her stroller and started cruising around to see what else we could show her. Within seconds we noticed that Science World wasn't built for Charlie, or kids like her...she couldn't reach anything, and if we brought her to it, she wouldn't be strong enough to use it. And EVEN if she was strong enough to use it, think about all those GERMS! Depressing! We both said, "wanna get our money back and go?" at the same time. And we did. We quietly walked the seawall home, both of us reflecting on what had just happened, and worrying about what was to come. We stopped at a bench, cracked a couple of bananas, and shared them with Charlie. She licked her banana and proudly exclaimed, "MMMMMMMMMM" over and over between giggles. And everything was good again...that's Charlie, that's what she does.

Strawberry girl.

2011-03-23T14:11:00.000-07:00

We've been letting Charlie lick/try food lately. She loves it and its helped make her more vocal. Pretty awesome.

Happy 21 month birthday Charlie!!!

2011-03-22T23:27:00.000-07:00

(Me and Char, 21 months old)

A very happy 21st bday to my sweet Charlie Barley! Mama loves you!

Mad about you.

2011-03-09T23:25:00.000-08:00

(Charlie, 20 months)

There's a look we've all caught a loved one giving us before. It's a look that's not necessarily intended for us to see, but we consider ourselves fortunate if we do. It's that look that gives you a quick glimpse inside their psyche, where for just a couple of seconds you can see yourself through their eyes. I'm talking about that look that shows you just how much you are loved...the one where you can actually feel how proud of you they are...that look that instantly inflates your ego and makes you feel so completely loved, admired, and appreciated...I get that same look from Charlie about 100 times a day, except she lets it linger and it's completely obvious that she intends for me to see it. Charlie will just gaze directly into my eyes for minutes at a time, almost daring me to look away first, and I can just feel how much she loves me. I swear I can almost hear her professing her unwavering love, admiration, and appreciation for me through her eyes, and it is seriously the best feeling in the world! It's pretty much all I'll ever need to keep on keeping on through the rough spots. I don't ever want to live without that feeling, it's one of my favorite parts of being her mother.

Well, On Tuesday at 3 am we headed to Children's Hospital because Charlie's new g-j tube was plugged. No matter what Matt and I tried, it wasn't budging and we couldn't get any food to her. At the hospital they used a special drug to unplug it and then kept Charlie there overnight to monitor her. Matt and I were lucky enough to both be able to stay in an empty isolation room that they brought two cots into for us...it was actually the best set up we've seen in all of our days spent at the hospital...and just feet away from sleeping Charlie. Everything got worked out and we headed home at 8:30 am that morning.
Despite that blip, Charlie has been really healthy lately, and is getting stronger and stronger everyday. She is now turning her head in both directions...this is new and IMPROVED! This isn't the usual course for SMA and as much as I'd like to know why she is progressing rather than regressing, as is the usual course of the disease, I don't really care as long as she's healthy...let's just keep calling it a beautiful miracle. In my heart I know Charlie will be with us for some time to come...I just feel it.

Charlie has been doing so well and I should be feeling content and relaxed, but instead I've been feeling a little rough emotionally. I've just been overwhelmed with my responsibilities as a mother and a caregiver of a high needs child and its been manifesting itself as major anxiety, panic, and nightmares. I've been worrying about a whole bunch of things I shouldn't be worrying about...yet I am. Fires, earthquakes, car accidents...I'm very clumsy, what if I trip while carrying Charlie from room to room and her head goes flying? You name it, I worry about it. There just isn't any room for error, and that scares the sh*t out of me!! I think I'm just struggling to find my confidence in my ability to always properly take care of Charlie, especially when Matt and I will be living separately in the near future and it'll be more of an individual effort on each of our parts to keep Charlie healthy and safe. Just feeling pretty freaked out I guess. I do realize though, that change is always scary, and it'll all figure itself out in time. Yup, trying to stay strong and positive here.

In just over 3 months we'll be celebrating
Charlie's 2nd birthday. Unreal.
Her nurse keeps telling me to start the planning
now, cause it's gonna be a BIG one.
And she's right, it will be!
Get ready to party hard Char!

Happy 20 month birthday Charlie!

2011-02-22T22:03:00.000-08:00

(Charlie, 20 months old)

Today is a big day. Charlie is 20 months old! She is no longer a 'teen'! Seriously never thought we'd see this day, yet here we are...and Charlie is doing FANTASTIC! It was February 21st last year, that I started this blog, I sincerely thought it would be a two or three month therapeutic process that would contain mine and Matt's precious memories of the short time we were told we'd have with Charlie. It's been a journey, that's for sure. But she's STILL happy, and she's STILL here. And, that's ALL. THAT. MATTERS. Happy 20th Charlie, you're somethin' else!

Gifted.

2011-02-12T19:30:00.000-08:00

(Glamorous Charlie, 19 months)

Several years ago I was diagnosed with PMDD, which is basically PMS times ten...if PMS is WWF's Chyna in a bad mood, then PMDD is Glen Close's character in Fatal Attraction. It's just a really rough thing to have to deal with. Anyway, after I was diagnosed I went to a workshop I called 'Period School', basically it was a room full of hysterically crying women sharing their stories of how PMDD had been stealing about a week of their lives every month. It was then that I realized, 'things could be worse' MUCH worse. My heart broke for some of these women...I mean, I had it pretty bad, but some of these women couldn't even function when experiencing symptoms, it was just awful. It was then that I self diagnosed myself as borderline PMDD, although some of my friends and family might beg to differ. Ha!

When I found out I was pregnant I was urged by my doctor to go to counselling weekly because women who suffer from PMDD are apparently more likely to suffer from post-partum. So I did. I have a theory about counselling...we can all benefit from it, whatever your situation, so if its offered free to you, take them up on it, it feels good! I went twice a month up until I had Charlie, I loved my counsellor and It was nice to take the weeks events and sum them up in 55 min with someone I felt connected to and not judged by. I can be pretty neurotic, so when I was told that I may suffer from postpartum, I obsessed about it, but along came Charlie, and besides feeling completely overwhelmed the first few days with such a major responsibility...to keep MY tiny little HUMAN alive, it was seriously smooth sailing from there on out. I was made for loving her.

I'm mentioning this because, its been one of those weeks this week. A lot of tears and bad thoughts. I'd been feeling pretty strong for a good chunk of time there, and then this past week showed up unannounced and uninvited. I've just been thinking a lot about the future. I'm not sleeping well, and all I do is worry, worry, worry. I worry about things like Charlie getting to big for me to carry, and what do I do in an emergency situation like a fire or an earthquake? She can't be carried for long periods of time and the elevators will be closed...and how do I manage all of her equipment? I worry about her feet curling...they've been curling up and her splints don't seem to be doing their job. I worry that I'm not stimulating her brain enough...what more should I be doing? It just never stops. I'm pretty sure that this has suddenly come on because of Matt and I separating...and as much as I know that it's the right thing to do, and we'll be sharing custody of Charlie, It's really frightening to take on so much change with a high needs child who regardless of anything else, relies on us just to breathe properly. It's just very overwhelming.

I've spent some time with friends recently who have children Charlie's age...I think that may have affected me as well (I love you all though, and I love our visits...keep em coming!). I forget just how different Charlie is, until I spend time with 'regular' toddlers. They run, dance, and talk at this age. They all just seem so much older than Charlie. It's really been sinking in lately because when Charlie was diagnosed at 6 months, the differences between her and other children were minor...no 6 month old walks or talks, and even though we were prepared for Charlie's imminent death, we never heard the words, "your daughter will never walk, run, dance, or quite possibly talk" It was obviously implied, but never really stated because the doctors never thought Charlie would make it past 9 months old. And although it occured to me, my main goal was keeping Charlie alive, not seeing her run. But now that we're at that stage, it's really affecting me. I was getting a blood test the other day and a woman was walking into her little 'cubicle' as a little girl with skinny little colt legs, about 2 years old, followed behind her...the woman said, "you gonna follow me in?" In her sweet motherly tone, but also in a tone that I knew didn't recognize what a beautiful thing it is that she could 'follow' her in. My eyes welled up with tears, but I managed to hold them back. But later that night, I let them go when I opened up to Charlie's nurse about how I was feeling. She talked me down and helped me remember why I should be thankful for everything that Charlie is, and stop feeling ripped off for everything she isn't.

And I am thankful for Charlie, and everything she IS, but I am human and sometimes I get a little greedy and want more...and that's one of the many reasons Charlie came to us...to teach us to be grateful for everything we do have, and that sometimes the best gifts can be disguised as tragedies. You're a gift to a lot of people Charlie, I love you.

Happy 19 Month Birthday Charlie-Anne!

2011-01-22T15:37:00.000-08:00

(Charlie 19 months old, with Iggle Piggle & Upsy Daisy)

“If you had no bones at all
Then you couldn’t run or crawl

And you couldn’t stand up straight

Or eat dinner off your plate

Without bones we’d all fall down

Just like puddles on the ground

Just like melted ice cream cones

If we didn’t have our bones”

These are just some of the lyrics to one of Charlie’s favorite Sesame Street songs sung by The Count. I get that the song is trying to teach children about what bones are and what they are used for, but if you ask me I think it’s a tad insensitive…I mean there are handicapped children on Sesame Street, kids who can’t “stand up straight or eat dinner off their plate” and they are comparing them to “melted ice cream cones”. But, Charlie loves the tune, and so far she doesn’t understand the lyrics, so I let her watch/listen to it because this is MY reaction to the song, not hers.

I do worry a lot though. I worry about when Charlie really notices she’s different. It breaks my heart to think about it. I know she notices some of her differences now, but she spends a lot of time indoors and with adults, so I wonder if she thinks, ‘when she grows up’ she’ll be able to do the things we do. Charlie’s two favorite ‘family time’ TV shows are ‘Dancing With The Stars’ and ‘American Idol’…she LOVES singing and dancing…and that breaks my heart too. She loves the two things she can't do, and will never be able to do. We’ve been spending a lot of time lately trying to get Charlie to talk. She babbles a bit, and says mama and dada, but not much else. SMA children often whisper because talking requires their weak lungs to constantly be taking breaths in, which is exhausting. And, we’re not sure if this is actually a symptom of SMA too, but we’re worried Charlie’s mouth might be seizing closed a bit. We have a speech therapist coming next week that will be able to answer some of our questions, and hopefully ease some of our worries.

Well, Matt and I have started our paperwork and planning for separating. And actually, we’re managing to communicate a little better with one another because of it. Obviously it’s stressful, but it really is the right thing to do for Charlie, and we both recognize that. We can now 100% focus on her, individually and together. We were wasting too much time being resentful with one another and not enough time enjoying our daughter, but we’re well on our way to figuring it all out. We’ve always been a good team when it comes to taking care of and loving Charlie, and nothing will change that.

I am getting super excited for spring! I can’t wait to pull the stroller out on a daily basis and take Charlie for long walks on the seawall. Lately, the highlight of her day is a 5 minute walk to the grocery store, and she oohs and ahhs at me picking out bananas and onions…BO-RING! I fantasize about sunshine and picnic blankets quite regularly. I am counting down the days!

Charlie is 19 months old today! 19 months! She is now closer to 2 than she is to 1! She has broken all the rules of SMA, and we’re gonna do our best to ensure she keeps doing so! We love you Charlie, stay amazing and keep smiling!

Privileged.

2011-01-14T21:39:00.000-08:00

(Charlie 18 months, in the tub at Canuck Place)

Last Saturday I walked to a friends place for dinner. Upon leaving my house I grabbed my door handle and pushed a button to call the elevator…once inside the elevator I pushed another button to get to the main floor. I then walked towards the front of my building and grabbed the door handle to exit my building. On my walk, I pressed one crosswalk button, in one of the ‘undesirable’ areas of downtown. I then obsessed about reaching into my bag for sanitizer, but couldn't help but imagine the germs multiplying in my purse as my hand blindly reached down, down, down, searching for the 'decontaminate' so I decided against it. When I arrived at my friends apartment building, I pushed four separate number keys on the front directory before I was buzzed into the building where I grabbed another door handle, pressed another elevator button to get in, and then another to get up to the apartment, where I immediately washed my hands. Germs. Germs. Germs.

This is how my brain thinks now. I obsess over germs. I am Jack Nicholson in “As Good As It Gets”. I am that weird lady with chaffed hands from scrubbing them so much. I give sick people dirty looks if they cough in my direction. If I get a tickle in my throat I go through my mental Rolodex of recent people and situations that may be to blame. It’s an exhausting obsession to have. Matt was sick for two weeks and I managed to keep Charlie healthy…it’s so rewarding to know that all of the effort I put into keeping her healthy, worked…but at the same time it causes me to be RELENTLESS in my quest to keep her that way! Day 7 into Matt’s sickness, and 3 days before I left for Hawaii, I was sitting in the living room with Charlie’s nurse when Charlie sneezed…I instantly started bawling…I had failed at my attempt to keep her healthy, I thought. But, the nurse calmed me down and told me not to worry yet and that it was probably nothing, and she was right. Now I find myself counting her sneezes and ‘allowing’ her a daily quota…any more than 4 and I’m officially allowed to lose it. I am constantly giving Matt grief over where he should kiss Charlie… “NO! Not on the face, FOREHEAD ONLY in the winter!” And, “No hand touching, grab by the wrist only!” Just crazy demands, or so it would seem to others…but this is the love of my life we’re talking about, and if a thoughtless kiss could steal her from me, well then it’s just not worth it. I’ll risk being/seeming ridiculous in exchange for a healthy Charlie, any day.

Hawaii was amazing. Lyn and Carly SPOILED me! Definitely one of my best trips. Thanks ladies! When I was making plans to go to Hawaii I booked Charlie into Canuck Place for 5 days, I was back on day 4 of her stay so I also got to join in on the relaxing Canuck Place action. We ended up extending our stay (twice) to 10 days! It’s strange, we feel SO at home at Canuck Place…we live 6 blocks away, but what a difference 6 blocks makes. We spent our days with several amazing kids…an 8 year old, a 10 year old, a 12 year old, and a 18 year old (he celebrated his 18^th birthday while we were there) I fell in love with every one of them. We spent every lunch and dinner with them, wrapped around two or three tables, and I came to the conclusion that these kids are pretty much the best kids on earth, and I really felt privileged to be able to spend time with them and get to know them. And, if it wasn’t for Charlie, I’d never get to know these kids and their parents…she never ceases to amaze me and is constantly teaching me/us something. I feel more connected to these kids and their families then I do with my own family and friends (no offense family and friends). They share something with us, that few people do…and it makes for a pretty intense connection.

The kids that frequent/use Canuck Place are really spectacular…I overheard one little boy, about 8 years old, saying, “Dad, I thought that after my surgery I wouldn’t be able to use my power chair for like weeks, but like 5 days later, I was fine.” He said it like it was no big deal…all impressed with his speedy recovery…what kid should have to get used to surgeries and the healing process? If that was me I’d complain about the fact that I had to get surgery, the fact that I had to be on a wait list to get surgery, the fact that I hurt for ANY amount of time after, and I’d tell my HORRIBLE story for years to come. I also met a woman who’s 15 year old daughter was diagnosed with Juvenile Huntington's disease…her daughter was a gymnast who didn’t have any signs of Huntington's’s until 10 years of age….and now, at 15, she can barely move or talk... her dad suddenly started showing symptoms and died from the disease as well, before they knew that it was in their genetic make-up. Just so sad. Kids are so innocent and resilient…and it’s so humbling to spend time with these little hero’s. By day 9 I was trying to contain my tears whenever we had dinner with them, it just really put life into perspective for us. That, and the fact that I seriously couldn't help but feel honored to be able to spend time with these little troopers who are constantly putting what really matters to the test. By the time we left, begrudgingly, we were preparing ourselves to miss these kids we had just met, and hoping we’d see them again soon.

We’re home now, and Charlie is the healthiest she’s been in months…we’re seeing plenty of leg and arm action, as well as some long term sitting up action which hasn’t happened in at least 4 months. She’s just unbelievable, beating the odds at almost 19 months old. I love her more than I’ve ever loved anything, and she’s in this stage right now where it obvious she feels the same. What more could I ask for?

Happy 18 month birthday Charlie!

2010-12-20T19:37:00.000-08:00

(Charlie, 17 months, showing off her pixie cut)

It's been one year since Charlie was diagnosed with SMA type 1 and last week was the first time that I dreamed things were different. It was a wonderful dream, and it was so believable...Charlie was able to really sit up...she was sitting in a highchair, and I was busy tidying the house up when I turned around to see her smiling away and feeding herself dry frosted Cheerios. I was instantly panicked, because all I could think was, "she can't eat food, she'll choke!" But at the same time I was amazed by what I was witnessing, and could see that she COULD eat food, and she wasn't choking...in fact, she was loving her Cheerios and eating them like an old pro. My mom was somehow in my dream and when I asked her how Charlie got the Cheerios she said, in a no big deal kinda tone, that my sister had given them to her. I kept trying to express how big of a deal it actually was that Charlie was orally eating food, but my mom and my sister just acted like it'd been this way all along and that it was no biggie. When I woke up and realized that it was just a dream, I was instantly depressed...I couldn't believe how excited and happy and amazed I had felt in my dream about such simple things like sitting up and snacking. BUT, when I thought more about the dream and it's 'message' I realized that nothing is 100%...I mean, she's moving her legs now, that wasn't supposed to happen...so hey, anything is possible, right? I spend way too much time focusing on what Charlie won't do/can't do...I could be spending that time more productively by keeping my door open to the 'what ifs'...there's nothing wrong with dreaming.

We've been out of the hospital a few weeks, and Matt's sick again. He's been locked in his room for 48 hrs to avoid spreading the sickness to me or Charlie. I slip a multi vitamin, echinacea, a shot of Buckleys, vitamin c, and soup in every couple of hours. I've been bathing Charlie everyday, double nebulizing her (a new machine that basically humidifies steroids into her lungs to help keep them strong) bipaping her almost full-time, and cleaning out her nose with a saline solution every couple of hours. So, now, we just wait. If she sneezes, I cringe...and I hate to say it, but I get resentful towards Matt. Obviously he can't help being sick, but I just see Charlie's life flash before my eyes whenever someone sharing the room with her coughs or sneezes. I DO NOT want to spent Christmas in the hospital, and obviously Matt feels the same...so hopefully all of the precautionary measures do their intended job. I'm pretty much holding my breath and crossing my fingers for the next 5 months, and trying to cut a deal with summer to come early.

Our stroller finally showed up a couple of weeks ago. When the rep came over to teach me how to use it, I'm afraid I was a bit of a brat with her. I became anxious when I saw the stroller and reacted negatively towards Jody the rep, trying to point out all of the 'flaws' instead of just admitting that I was overwhelmed. It's just that when I saw it, and all of the attachments, like the IV pole, my heart sunk and I realized that from now on, whenever we go for a walk, people will know right away that something is 'wrong' with my baby. And yes, I talk about it openly, but sometimes as my friend Meaghan helped me articulate, I just want to blend in too. And, as suspected, people are starting to do double takes...and it makes me feel uncomfortable...and then ashamed with myself because I wonder if it's because I'm embarrassed of Charlie...but, I know it's not that, it's more that I just want people to see Charlie BEFORE her illness instead of after her illness or not at all. It's gonna take some getting used to, that's for sure.

Charlie turns 18 months on Wednesday! A year and a half! This is HUGE! A couple of friends are coming over on Thursday and we're celebrating with wine and cake and pressies for Charlie...and then it's her second Christmas on Saturday! Both amazing milestones that we were told we'd never see. LIVING proof that you shouldn't believe everything you're told.

Happy 1 1/2 Charlie, and Merry Christmas!!!

Christmas miracle.

2010-12-07T20:32:00.000-08:00

(Charlie, 17 months)

We've been home for a couple of weeks, and now that some of the dust has settled, I'm actually beginning to get pretty excited about Christmas. We have the tree up, the stockings hung, and Matt and I have our differences aside. Christmas is about love and family, and Charlie is that to both of us, so we're focusing on her....and honestly, it's not really hard to do, she's easy to lose ourselves in.

Charlie has been astounding us as of lately...again. After two back to back colds, and many close calls, Charlie is doing things she's never done before...things we were told she'd never do. It was last year on Christmas day that Matt and I took Charlie to emergency at Children's hospital because her motor skills had gone from GREAT to GONE in about six weeks time. Charlie had never really moved her legs or bared weight on them since birth. I had googled 'my baby doesn't bare weight on her legs' many times, and was always relieved to see that this was a common worry among many mothers and that everything was going to be fine. So, I'd stuff my worries back down and convince myself I was just being a nervous first time mother. It was when we started noticing that Charlie was no longer doing the things she used to, that we really began to worry.

As I've said before, when Charlie was diagnosed we were told she most likely only had a few months to live, Charlie had gone downhill so fast that the doctors just thought that if she continued at that pace, she would be gone within months. BUT, we're happy to report that, one year later, Charlie has not only leveled out, but she has IMPROVED in many areas! She is flailing her arms, wiggling her bum, and moving her legs and feet, something she NEVER did before (unless she was in water)...I've been calling it a Christmas miracle! This all started in the summer, but keeps getting better and better. Every time Charlie gets a cold and we see how sick she can get, it sucks the hope out of us, and then we get home and she starts doing something new and improved, and it not only fills up the old hole where the hope used to be, but it creates a new one, one that makes us dream bigger and better for Charlie.

SO, on Monday I went for dinner with my 'angel' and her daughter. I met her at my gym last year and we became friends and she did the Canuck Place Adventure Challenge with me. She's a very interesting woman who's been AMAZING to me. She has supported me and Charlie in many ways, and I'm very thankful to have met her. At dinner the other night she invited me to join her and her daughter, who is my age and is also amazing, in HAWAII on Jan 1st! I came home worked it out with Matt and the nurses, and I'm going! I am REALLY looking forward to it!

This week, life is good.

A video of Charlie 'dancing'.

Under construction.

2010-11-26T17:07:00.000-08:00

I just got home from the gym where I was dodging coughs like they were gunshots in the ghetto. I always try to park my bike in the 'least susceptible to germs section' but which direction one chooses to spread their sickness in, or whether or not one practices 'the rules' to coughing and sneezing is beyond my control. Cover it, contain it, keep it to yourself, perhaps use a Kleenex, or, if none are available to you, cough or sneeze into your arm or shoulder people. I've mulled it over many times about whether or not I should just quit the gym in the winter, but i just can't. And it's not because I don't love Charlie enough to do so, it's because I love her SO much. I need the gym to stay mentally fit, it's my anti depressant...if I go a couple of days without it, I can feel myself slipping into a bad place. I've actually heard too that physical activity actually helps build your immune system, so as much as I'm putting myself in harms way with all of the shared sweat and germs, I think I'm counter acting that by staying active in the first place and building up my immunity. So, I need it, and Charlie needs me to be mentally and physically fit for her too. So we both win. There. So go away guilt!

Canuck Place was such an amazing break for all of us. It was so nice to relax and spend a week in such a positive, happy, relaxed and upbeat atmosphere. This was our second long term stay, and the first time I really realized something that Canuck Place gives us...a sense of normalcy. Matt and I are so used to feeling 'different' 'ostracized' 'left out' 'misunderstood and 'abnormal' and not because people try to make us feel those ways, but because we don't really know or spend time with people like us. All of our friends are great, but their healthy baby dreams came true, life had other plans for us, and it's nice to be able to spend time with other families who's life course took an 'alternative' path as well. I think Matt and I neglected to notice this important detail last time we were at Canuck Place because both of us were still sort of in denial and we weren't ready to accept the fact that we were 'those people'. We're ready now, and can appreciate the support accepting it gives us.

So, we're home now and it's back to life, back to reality. Mine and Matt's reality is currently under construction...a couple of months ago, when Charlie was sick for the first time, and we got the GREAT news that there was a good chance she'd be around longer then they had initially thought, Matt and I both (individually, not shared at the time) had an epiphany...up until that point Matt and I had been putting our needs and our wants and happiness on hold...and putting Charlie's needs and wants first and foremost (which any parent would and does do) but because we were initially told that she was going to die soon, and were putting our individual happiness and needs aside, 'until after', we both realized that we hadn't really been 'living' while Char was alive. Later, we talked about, got upset about, and discussed some more, our shared epiphany, and we decided to separate. Our relationship had cracks before Charlie's diagnosis, but add to that the stress and pain of a terminally ill child, and you have all the ingredients for a terminally ill marriage as well. We are still figuring out the details, but we both feel/know it's the right thing to do.

Yesterday we took Charlie to hang out in the Vancouver Canucks dressing room and get pictures taken with the Sedins from the Canucks, and we did an interview for an upcoming Canucks/Canuck Place/children's telethon, it was an amazing day! Charlie was so good! She was just melting every ones hearts, as per usual...it was one of those moments where Matt and I kept looking at each other, beaming with pride, with smirks on our faces that were saying, "isn't she the best?! look at everyone eating her up and loving her." And, She is, and they do.

Happy 17 Month Birthday Charlie!

2010-11-23T12:52:00.000-08:00

(Charlie, 17 months)

Yesterday was Charlie's 17 month birthday. Two weeks ago we were terrified that she/we wouldn't see this day, but we're happy to report, Charlie is on the mend, and getting stronger everyday (again!)!

Two days ago I got an email from a woman that I've never met or talked to before...it said, "Where are you? I have been following your blog for months now and you haven't posted in a couple of weeks and I'm worried sick about Charlie! Just wanted you to know there are a lot of people thinking about you and your family everyday..." WOW! My heart swelled! I had been having one of those days where I was feeling negative about people not meeting my expectations regarding Charlie and the support I/she does or doesn't recieve from them, and feeling disappointed and hurt because of it...so, when I received this email from a complete stranger, I changed my focus from who was disappointing me, to who was pleasantly surprising me, and I feel much better now because of it. At the expense of sounding arrogant, Charlie is a rare, special angel, who anyone would be PRIVILEGED to know, and if someone who is fortunate enough to have the opportunity to really get to know her, doesn't have the time, energy, or desire to, well, it really is their loss, and they're throwing away the most beautiful opportunity of a lifetime. I truly believe that...and I think people like Deborah, and most of the people in our lives understand that concept too. Thank you Deborah, you made my day!

Charlie was in Children's hospital for two weeks, the first week very touch and go, but she's feeling much better now so we have been preparing for home through Canuck Place where we've been staying the past five days. We are getting super comfortable at Canuck Place...we actually asked to extend our stay another couple of days, where in the past, we were always in a hurry to get home...ahhh the changes comfort can bring! It's just such a relaxing place to stay, and the staff is amazing. Actually, on Thursday we are being interviewed for their Canuck Place Telethon commercial, and Charlie is being 'featured' canoodling with a Vancouver Canuck, pretty cool!

So, all in all, life is good again this week, and Charlie is still amazing us with her strength, bravery, and her beautiful, happy disposition...still learning something from her, every. single. day.

Happy Birthday Charlie!!!

The magic touch.

2010-11-10T15:05:00.000-08:00

(Charlie, 16 months)

Charlie’s been in the hospital a week now…and, I’m predicting she’ll be here at least a couple more weeks. This cold hit Charlie a lot harder than her last one… she was only about 85% of her old self when she contracted this cold/flu, and I imagine that's got a lot to do with how she’s handling it. Day 2 here really rattled me; it was a VERY emotional day. Charlie just looked so sick and beat down, we’ve never seen her look so exhausted and weak. You know how you hear people say that when a loved one died from an illness, like cancer, while they were present in the room, that right before the person passed away they saw a look in their eyes that said, “I’m ready to go now, I don’t want to do this anymore, please let me go.” Well, I was positive that’s what I was seeing that day. At one point Charlie’s pediatrician, another doctor, and two nurses from Canuck Place came to visit while Matt was out and I could not stop crying and I told them how I saw ‘the look’ and how I’d never seen it before, and I was confused…is this what ‘regular’ children with a cold/flu look like, or was Charlie trying to say goodbye to me? When I later asked Matt if he saw what I saw, he reluctantly admitted that he had too. That day sucked the life out of us, and erased ALL of the positive thinking we’d been practicing up until then. Last time we were in the hospital we were given the good news that it looked like Charlie might be around longer then they initially thought she’d be…we’ve since learned, the hard way, that we cannot predict anything when it comes to our little baby. All we have is today, tomorrow is no guarantee.

Day 3 grabbed us, shook us hard and said, “look at this tough little angel, she’s OBVIOUSLY going to be fine, relax already!!” And with that, Charlie was smiling and singing and playing all day long. She seemed like her old self and made me think that I’d imagined the day before…until day 4/5. Charlie had two days of horrible sleeps, yellow secretions, low oxygen levels, and a high heart rate, all of which were showing us that she was struggling to breath. Our pediatrician and our respirologist came to see me in Charlie’s room and told me that Charlie had had a really rough night and morning, And, for about the third time since we’d been here this time around, we discussed our wishes regarding how far we were willing to go in an emergency situation. The respirologist, who is a very kind and compassionate woman, explained that she’s seen seemingly happy SMA babies go from good to bad, QUICKLY, one minute Charlie could be laughing, and the next choking on a mucus plug. Then we discussed the measures Matt and I were willing to take, and then REALLY discussed what they entailed, I am now rethinking my stance on some things…I think? It could be a very ugly and painful procedure, and is not guaranteed. Do we want Charlie to suffer so we can possibly have another 6 months with her, or do we want her to go peacefully? And, should we try every intervention, or let nature take its course? And whichever decision we make, will we be able to live with ourselves after, for the rest of our lives? Such painful, complicated decisions to make.

Now, day 8, Charlie is looking better, but I also know better than to put all of my eggs in that basket, but, of course, we’re still optimistic that our baby is on her way out of here someday in the near future. It’s the craziest thing….when I’m gone for a while, or when Charlie is getting her physio and is fussing with it, I can walk in, walk over to her and touch her and look up at her monitors that keep track of her oxygen levels, respitory rate, and heart rate, and they will ALL level out, almost instantly. A nurse commented on it the other day when I crawled into Char’s crib to cuddle her…her heart rate and oxygen levels, instantly settled, and she stopped fussing. If that doesn’t make me feel like a proud mama walking on sunshine, I really don’t know what it would take to do so! It’s proof that love and attention are important ingredients for good health, happiness, and well being...here’s hoping I never lose my magic touch, and Charlie beats this bug.

Here we go again.

2010-11-05T01:08:00.000-07:00

(Charlie, 16 months)

We’re back in the hospital. Charlie has a cold/flu that within two days of rearing its ugly head, is already making her last cold, which she was hospitalized 15 days for, look like just a small case of the sniffles. Charlie has diarrhea, an off and on fever, and has thrown up twice, she has only thrown up 2 times in her life, so it’s definitely cause for alarm…also, throwing up is dangerous for an SMA child because they can’t swallow and can asphyxiate on it. We stopped feeds for a few hours and are now slowly administering her overnight feed to see if she gets sick again, if she does, they’ll have to put her on an IV…we’re waiting to see the radiologist in the morning who will change Charlie’s g-tube (tummy feeding port) to a jg-tube, apparently it’s a fairly easy procedure and it will send her feeds to a different part of her tummy so she can't throw up. The nurses have been deep suctioning Charlie’s throat and nose and she already has a lot of green mucus, which is a bad sign…that means it’s thick and threatens to form a mucus plug in her throat, which can cause her to choke and stop breathing, which would require us to make some big bad decisions...when we were in the hospital last time, her secretions were clear until about day 10 when she was just beginning to get the last of the junk out, it happening so early this time around really has me worried. This is obviously a pretty wicked bug.

It all feels like the beginning of the end to me. I try to stay optimistic, but I feel like whenever I accept Charlie’s condition and decide to live our/my life as if she was ‘handicapped’ instead of 'dying' I am quickly and quite rudely reminded that NO, she is not handicapped, and that we will never really be 'living' with SMA, and we will not be 'beating' SMA, we will instead be constantly tortured by it...SMA will constantly be holding us by our ankles, and threatening to drop us hundreds of feet below, into the grieving parent abyss. Morbid, I know, but realistic. I’m tired of tricking myself into thinking otherwise, only to be jolted back into reality when my baby girl is hospitalized, yet again, and her oxygen saturation machine is showing me, PROVING to me, that she is in fact struggling to breath. I think Matt and I get used to Charlie’s behaviors, thinking they’re 'just Charlie' when in fact they’re 'just SMA'. Before we knew anything was wrong with Charlie she would make this little gurgling sound while breathing fast and heavy…Matt and I just thought she was being silly and we’d get face to face with her and copy her back, not knowing that this 'game' was actually Charlie struggling to breath. Even now, I think we’ve gotten used to a lot of Charlie’s struggles, and have forgotten or brushed off what they’re really reminding us of…it’s easier that way, and it’s our way of accepting Charlie for everything she is.

All the statistics say that 90% of type 1 SMA children will die by the age of 2. That statistic has been stuck on repeat in my head all day. I’ve spent a lot of time in the recent past wondering how it happens, how does a child go from stable to not stable? What are the signs and situations leading up to it? How can we be prepared? And, now I see. We went 11 months since Charlie’s diagnosis without a major glitch…no colds, no flus…A LOT of what ifs, but nothing ever actually really happening. Until recently. Now, it won’t stop. Because Charlie never really got back to her old self (her baseline, as the doctors call it) since her last cold, this illness will wreak more havoc on her body this time around because her weak body is even weaker than usual…I’m REALLY praying that this is as bad as it gets.

Matt and I have discussed it and we’ve decided that, from now on, whichever parent gets sick , they will have to abandon the home and avoid the other and Charlie until they’re better…it has to be done…there is just no way that we can avoid passing the sickness on in a 1000 sq ft, 1 floor condo…that and Charlie is just too tempting to smother with love and kisses and it just wouldn’t be safe to do so. So, the only option is to remove ourselves from her space until we’re no longer sick and we're not putting her at risk anymore.

I love my little Pebbles, and I can’t stand thinking of life without her. Get better Char. We love, love, love you.

Happy Halloween!

2010-10-30T16:28:00.001-07:00

Pebbles.

Princess.

Happy belated 16 month birthday Charlie!

2010-10-27T22:05:00.000-07:00

(Charlie @ almost 16 months)

This is the first time I've left Charlie's birthday post this late. I've just been feeling so stressed out and self absorbed lately...so much so that I couldn't even muster the energy, nor did I have the mental capacity to sort through and rehash my emotions. I still don't really. So, I won't yet.

All I can really say is that when Charlie was in the hospital this last time, and after a routine follow up with her neurologist, we were told by both her neurologist and her respirologist that they believe she may be around a little longer than they initially thought she would be. GREAT news, but it really got Matt and I thinking about a lot of things. Like what was really important in life and what wasn't, what was worth putting our blood, sweat and tears into, and what wasn't worth our energy at all. For the past 10 months we have been living our lives waiting for Charlie to pass away, and then we thought, 'after Charlie' we'd begin our lives again...start over. But now, after Charlie's recent, more positive prognosis, whether that means 3 months, 2 years, or 10 years, we've began to think more along the lines of, "This IS it, this IS our daughter, this IS our life we're living, right NOW, so let's start living it the way we want to live it...let's stop planning for something horrible that hasn't happened yet because we'll never be prepared and we'll only waste the precious time we do have, and instead look at this whole situation as a gift and a warning, to start living life NOW, who knows what tomorrow brings. Life is short, lets enjoy it while we can." And, In realizing this, we discovered that our lives are in need of some major renovations for both of us to be truly happy, and for Charlie to be truly happy too. So, we're still figuring out what that will look like right now.

Not a day goes by that I'm not thankful for Charlie. Everyday I unwrap another layer of my little present and I get a better glimpse into what an amazing gift she really is. I was talking to my friend Amanda who has a little girl, Gemma, who has an undiagnosed neuromuscular condition similar to Charlie's and we both felt that as painful as it can be to have a child like this (meaning, it's hard to be told your baby won't be here for long) we also feel like we're the 'chosen ones' like, we've been entrusted with little earth angels. I told Amanda that I often feel Charlie is like my little Buddha, so peaceful and wise beyond her/anyones years..she's better than all of us, so pure and enlightened. Amanda agreed and we discussed how we often looked to our 'angels' to give us the answers and show us the way, and to help us make decisions in our daily lives. It's really pretty amazing. And I wonder why me? Why Matt? Sometimes I'm not sure if I deserve her, but she's mine all mine, and I'll keep her regardless of my prerequisites.

I love you Charlie. I'm glad you chose us. Happy 16 month birthday! xoxo

Time out.

2010-10-20T20:35:00.000-07:00

(Charlie, almost 16 months)

We're going through an incredibly difficult time right now. We're in the middle of making some major changes, but it's not really the time to talk about it.

Thanks. And, I'll be back soon.

Home.

2010-10-09T22:48:00.000-07:00

(Charlie 15 months)

We got home from the hospital on Wednesday. Before we could leave we were told to go and buy a new rear facing carseat for Charlie because she was 'too big' for her current one, and it 'wasn't safe'. We explained that it has become very difficult for Charlie to travel in the car in an upright, reclined carseat and that we really needed a flat one (which we had mentioned and asked for several times before) that she can lie on in the backseat...one like the boy in the isolation room next to us had. We were told we didn't need it yet and to go and buy a new rear facing one for now and to worry about the other one 'later'. Matt and I were very irritated and expressed this. No matter what size Charlie's rear facing car seat is, it's dangerous...she is not a 'normal' child, therefore 'normal' children's safety rules do not always apply to her! We explained that in the event of a car accident, it is a great possibility that Charlie's neck could snap, rear facing or not. Her head is like a heavy, limp, bowling ball attached to a toothpick, it will fly! Also, Charlie is a stomach breather and because her muscles are weak, she crumples in an upright carseat and struggles to breath...having her duct taped flat and sideways in the backseat would even be safer than a 'regular' carseat.

We are so frustrated with people telling us to wait until later because, when/if we do, we end up in dire need of a piece of equipment that takes several weeks to come in, which can be VERY detrimental to Char's health. As it stands we've been waiting six months for her stroller (although her new physical therapist is working hard to get it asap) and she REALLY needs it now...she has outgrown her current one and going for walks is Charlie's main source of entertainment and enjoyment (aside from DVD's). We had to ask several times for Charlie's bipap machine and were told several times that she didn't need it yet, but we wanted it to be prepared and to teach her slowly how to use it and to get comfortable with it. We are VERY thankful we pressed for it, because like most of the equipment, it takes time to get ordered and come in as well as we needed a hospital stay and training to learn how to use it. When she got sick this time, her first time, she REALLY needed bipap and was used to using it BEFORE she needed it, which helped, AND we were required to bring our own bipap to the hospital with us...what would have happened if we hadn't pressed to get it months ago and Charlie wasn't trained and we didn't have one to bring to the hospital with us?! Also, although we managed to get Charlie home from the hospital in her new 'normal' child carseat, it was the scariest ten minute drive ever! She struggled to breath the whole way home, choking and eyes watering the entire time. When we tried it again two days later, it was the same scenario. So, we've decided we won't/can't take her anywhere in the car anymore, except appointments...I imagine even those trips will be hair raising experiences.

Charlie getting sick showed us just how bad things can get. Even though we're home now, she is far from recovered. She's not the same kid she was the day before we took her to the hospital. She can barely be held upright for 2 minutes now before choking, she's on bipap at night and during naps which is causing chaffing on her face and we were also informed that kids who use bipap for extended periods will most likely get some facial deformation...and I know that it shouldn't matter to me, but it does, it hurts. I love THIS beautiful little face, the one that looks like the perfect mix between me and Matt...but, I know I need to put the surface stuff aside and be happy that she can BREATH, that's what matters most. We have discussed it and seeing what a 'minor' cold did to Charlie, we have decided to pretty much become hermits. At this point we cancelled Thanksgiving dinner because we're terrified of germs. We often forget that it's not just Charlie we need to protect from germs, we need to be just as diligent in protecting ourselves too...if we catch something it's almost guaranteed she'll catch it too. The doctors told us that the 15 days we were in the hospital is considered a short stay for an SMA 1 child...and we just CAN'T go back there anytime soon...seeing Charlie lay in that crib day in and day out, no walks, and not being able to really hold or cuddle her without a million cords getting wrapped up in each other and setting the machines off was so hard...we were SO stressed and completely losing our minds!

Lately, in preparation for bed, I brush Charlie's teeth with a toothbrush that's connected to her suction machine so she doesn't swallow her secretions, I clean her nose out with saline, put on her splints, I set up her feeding pump and connect it to her, put her bipap mask on, and climb into bed with her and think, "WHOA...REALLY?!" I haven't had a good nights sleep in weeks. My 'sleeps' are full of thinking, thinking, thinking, worrying, and waking up to turn Charlie over every two hours and feeling her stomach to make sure she's still breathing. It's all so overwhelming. It's much better being home, but at the same time, I feel less pressure to make sure she makes it through the day/night at the hospital because I know there are qualified nurses and doctors there if something goes wrong. I'm very anxious and obsessive compulsive about checking and double checking that everything is OK, which definitely makes it difficult to relax and get some sleep. At the hospital we were told to have her in our sight at all times from now on, so there is no going to bed without us anymore...if we're up till 1 am, so is Charlie...but, she doesn't mind, she likes to party.:)

Here's hoping for a mild Winter with no illness.

Human nature.

2010-10-03T23:58:00.000-07:00

(Charlie, 15 months)

I'm home alone and I'm supposed to be taking a break, a time out of sorts, from all things Charlie...but how is that even possible? Its day 12 for Charlie at the hospital, and Matt is staying with her tonight, she's on the mend but her secretions are still thick and we find out if we're moving over to Canuck Place tomorrow or staying at the hospital a little longer.

We've been eating shitty, sleeping shitty, and super stressed out...we just want to be home again! We haven't really cuddled Charlie in 12 days, and that's 12 days more than we're used to...can't be good for her either. But, the good news is, Charlie's respirologist came to check on her yesterday and couldn't believe how much she was moving her arms and legs and said "type 1's don't move like this at her age, she's more of a type 1 1/2 and I think if we manage her colds quickly, she'll be around longer than we expected." Great news! And, yes, I've heard SMA parents say their kids were a type 1 1/4's or a 1 and 5/8th's, and I'm not an optimist by nature, BUT, this guy is as frank as they get...in all of our meetings with him he has given us nothing but the grim truth and facts, he's a VERY serious man...Matt and I always leave his office completely deflated and ready to jump off a bridge, so I know he wouldn't sugar coat anything, and frankly, that makes me respect him and his opinions that much more. So, we're feeling a little hopeful again in that regard. We feel like we can dream again...but carefully.

We are the proud parents of the most beautiful little girl in the whole world, but as I've said to my family and friends before, I can't help but feel like I'm/we're in emotional and parental purgatory. We will never really be happy and satisfied with our lives as parents, because she's sick, and we don't really feel like real parents either...not parents of a child like almost everybody else we know is, like we also planned for and dreamed of too, but one they say will be here today and gone tomorrow. And because Charlie is our only child, there will soon come a time where Matt and I will have to give back our titles of 'mom and dad', I really can't imagine going backwards to the Charlie-less couple we were before her. It's frustrating because we all sort of, wether we admit it or not, have children not only when it's 'our time' but also, it seems, around the same time as all of our peers are starting families...we get to a certain age and the pressure is on and we desire to be included in and partake in the evolution of growing up, family, and the 'next step'. When we weigh our options we often think, "Is it really worth waiting five more years? All of my friends children will be in school and I'll have a newborn." And often, that helps in our decision process regarding starting a family, or waiting a little longer. It's human nature to connect with others that are on the same path as ourselves, and to be influenced by them as well.

Matt and I have more in common with the parents we've met in the last 9 months who have children with rare neuromuscular diseases and cancers, then with the people we've spent the past 20 years growing up with...that baffles me...that we're 'those people'. Still. Our future holds many hospital visits, many close calls, plenty of stress, big decisions, loneliness, and isolation from our family and friends, sprinkled with good times. Often we hear people say, "Wow, you two are so strong, you know, whenever I'm having a bad day, or complaining about my life, I think about you two, and how strong you are, and I realize how fortunate I really am." And, I know people only mean well with that statement, but I can't help but feel like mine and Matt's and Charlie's lives are being used as the barometer for a shitty life...like, "Things could be worse, you could be Matt and Cherie" kinda thing. It's almost embarrassing. I feel exposed...like I couldn't even fake like I had it all and was living the dream (as we often do) even if I wanted to. It's a really good thing I'm a 'wear my heart on my sleeve' kind of person!

I'm thinking too much time in the hospital, in an isolation room with no windows, is NOT a good thing. We're really needing home right about now...and maybe an attitude adjustment...or maybe I've just got a case of the Mondays.

Get better Char!

2010-09-29T19:24:00.000-07:00

(Charlie, 15 months, getting music therapy)

It's been a week since we brought Charlie to the hospital, and we're still here. Initially we thought we'd only be here for a couple of days, but I guess Matt and I have been a little naive in thinking that Charlie's 'tough' and isn't your average 'weak' SMA type 1 baby...but, she is. Matt and I spent 11 months preparing for and avoiding this day, all the while not expecting it to look quite like this. It's scary seeing our little baby laying in a hospital bed with cords attached to her little body and a beeping machine that is either trying to console us with its mellow beeping, or scare the crap out of us with its frantic beeping, attached to the other end.

Charlie is doing OK but the doctors just want to be sure that she's doing really OK before we either head home or over to Canuck Place to help us transition back home. Her secretions (phlegm) have gotten thicker and if we don't take care of it, Charlie is at risk for a chest/lung infection, as well as pneumonia. She has been getting chest physio 3-5 times a day right now so they can loosen up the goo and deep suction as much of it out as possible to avoid complications. It could still take months to recover after and if she gets a cold while still recovering, it can look a lot worse than this.

I've been staying over most nights and Matt does days...only now are we beginning to lose our minds a bit. For some reason though, time goes by really fast here. That's not how it usually works...usually when I'm not enjoying myself, time drags, but here, it goes by so fast! I think it's because we're on a pretty tight schedule with feeds, physio, playtime, naps and swapping off, that time just slips away. But, we're beginning to feel the effects of this stressful situation now. At first, when we thought it was just precautionary bringing char in, we didn't feel too stressed out, but now, several end of life/palliative care talks, and more details and understanding of the disease later, as well as seeing how weak and helpless Char really gets when she's sick, we're feeling it. Charlie is still ALWAYS smiling, but she's sleeping more, and not recovering very quickly from what is considered a 'weak' cold to the average person...and knowing and watching this breaks my heart. And, makes me love her even more. I really, really, really, really, really, can't imagine ever having to say goodbye to her.

A couple days after we got here, a counsellor from Canuck Place came to Charlie's hospital room to talk to Matt and I. You'd have thought that we had never ever met another human being before...especially one who'd asked us about ourselves and how we were doing with this whole situation. We were both finding it incredibly difficult to give the other a turn to talk...just sitting in our seats, wiggling around restlessly, trying hard to contain ourselves and keep our mouths shut until it was our turn to speak...it was obvious we were both overflowing with emotion and definitely needing to do that more often. I think she just meant to drop by, but a half hour in, she was sitting on the floor nodding back and forth between Matt and I, barely able to get a word in herself. An hour and a half later she was on her way out...but, I think she could have stayed 6 hrs, and we would not have run out of things to talk about. I asked her about grief...I'm obsessed with it...I NEED to know how I should plan to feel...knowing and preparing has always been half the battle for me. I asked her how past 'clients' have dealt with it...one thing she said that really resonated with me...she said that she's heard a lot of grieving people say, "I want to be alone, but I don't want to be alone." I get that. So much. That's me in a nutshell. And, I know I'm not fully there yet, meaning our situation will get much worse, but I'm like that now. She said one woman told her she wanted people there, but she didn't want to talk about anything, and that she just preferred to lay in bed and hear other people out and about the house doing their thing, but leaving her alone. I totally get that. I often think, "Oh god, don't ask me, I don't want to talk about it." While at the same time wondering, "Why aren't we talking about it?!" I feel sorry for my support system sometimes, I really do. But, I'd be there/go away, talk about it/not talk about it with them if they ever needed me, no problem.

Despite mine and Matt's lack of patience and understanding with one another sometimes, we've been a pretty good team this past week. I know both of us are at least grateful for that right now, if nothing else. It's good to know someone understands you and has your back in times like these. So thanks Matt, keep up the good work!

Charlie is probably up from her 7 pm nap, so I'm off to entertain and cuddle her now.

Happy 15 month birthday Charlie.

2010-09-23T13:22:00.000-07:00

(Charlie, 15 months)

Today is Charlie's 15 month birthday and we're spending it in the hospital. I usually try to stay on the positive side when writing Charlie's birthday posts, but that's not going to happen tonight.

Last night was a rough night. It was difficult to get Charlie down to sleep and even after we finally did, she woke up crying several times. Matt and I chopped it up to her molars coming in, and just made sure to dose her with Advil before we finally hit the hay at 1:30am ourselves. Charlie was really snoring up a storm and her breathing sounded really 'crunchy', which isn't totally unusual for her, her secretions pool in her throat and she always sounds a little 'crunchy' and 'gurgly' like she's Listerine-ing at the oddest times...usually when she's delighted with something. She tends to gurgle when she's showing off or excited about something, but can't find the words to express herself, so instead she gurgles and makes super animated Groucho Marx expressions with her little red eyebrows...so, what we usually think of as cute and very 'Charlie' was actually difficulty breathing and managing her secretions this time. It's so hard being a first time parent with a sick child and trying to figure out what's normal and what's not, what's just Charlie, and what's cause for alarm?

Anyway, I was up all night and swapped with Matt at 8am this morning and went and slept in Charlie's room/the guest room. We were meeting with a Social Worker at 11am and I wanted at least a couple of hours sleep before we began discussing feelings and Charlie's condition. I NEEDED sleep to handle and process those things. When I (barely) woke up, Matt and I fed Charlie and noticed that her nose was really runny and her breathing sounded more labored than usual, we still tried to convince ourselves it was due to her teething, but after awhile neither of us were buying that weak explanation, and we just knew it was a cold, a cold that we had managed to outrun for 11 months since her diagnosis. It was a sad day at our house today, it felt like the first domino had fallen. Even though we knew it was inevitable that Charlie would get a cold, we had let ourselves down. We failed. When you out run something that long, I think you start to believe your invincible, but, the truth is, it probably wasn't so much of what we were doing all along, but it probably had more to do with luck as to why Char hadn't had a cold yet. Yes, we kept our hands clean, bathed her often, kept her away from sick people (to the best of our ability) and cleaned out her nose on a regular basis, but it wasn't going to work forever...even a great goalie can't block every goal from getting in...colds and germs are relentless, and they'll sneak past you when you least expect it. That's not to say we won't remain diligent in protecting Charlie from germs in the future though...actually, we'll probably become even MORE protective of her.

My friend Christie asked me a few weeks back, "So, what actually happens to Charlie when she gets a cold?" And I explained it like this: The first one or two colds probably aren't actually going to be her end, but, it works more like strikes...each cold Charlie gets works as a strike against her. She can't clear or move her secretions very well, so they just build up, making her more weak, more prone to infection, and less likely to handle the next cold. I sort of think of it as her lungs starting out as an empty glass that slowly fills with fluid, one cold at a time, until it overfills and isn't able to do its job anymore. So, i guess, we're on strike one.

Rewind to earlier today...Matt and I were talking to the Social Worker when both of us became more honest about our feelings about everything that's been going on, than we've been in a long time. It's been a long time since we've been in the presence of a neutral party who's sole purpose was to delve into our emotions and figure out what we we need as individuals and as a couple in the middle of a very sad situation. Matt and I seem to forget that. We are almost used to feeling alone and disconnected, and we're getting used to having a child that we're told will never really move, and won't live long. It's REALLY sad, yet we seem to think we're just supposed to buck up, put on a happy face and get over it and move forward. I often feel like I'm in a bad made for TV movie about me, and starring me...it just doesn't feel real half the time, and when it does, I feel like I'm being too dramatic about it all, and I think, "Jesus Cherie, it's been 9 months since her diagnosis, when are you going to stop talking about it and move on with your life...wah, wah, wah!" Really. I confuse myself as to why we can't just be happy she's here still, and keep on keeping on. And Matt feels the same. I realized today when we were talking to the Social Worker that we have a lot of similar thoughts, but we don't share them with each other, and it alienates the other and contributes to our own individual inner guilt, allowing it to fester and grow out of control, building shame and anger. For example, I LOVE Charlie, Matt LOVES Charlie, but today it came out that we have both, individually and secretly, thought, "Please end this soon so I can take off and start a new life and try to forget this one ever happened." Not something you really want to share with your partner, not something you really want to keep to yourself either. And no matter how guilty and ashamed it's made me feel to think, it felt good to know Matt has felt the same way too...let's us both know it's natural to feel that way sometimes. But, now that she's actually sick, we're feeling ashamed and guilty again, wondering if the universe heard our thoughts. If so, we didn't mean it!

After the Social worker left, I cried some more, got myself together, told Matt to call our pediatrician, knowing full well we'd soon be headed to Children's Hospital, and went and took a bath and a nap before packing our bags. I know how it works now, here at the hospital, Charlie fusses all day and night because it's an unfamiliar, yet familiar place, because people are poking and prodding her, she sleeps with me at home, so I end up 'sleeping' in a tiny crib with her, spending my night adjusting the machines she's hooked up to, to stop/avoid the random beeping in the middle of the night that without a doubt will ALWAYS happen..ALL. NIGHT. LONG. When we got here they took a chest x-ray, took a sample of Charlie's mucus and blood, and put us in our own room in ICU. Then they went over the DNR (do not resusitate) orders with us, and asked us what we wanted to do if a situation should ever arise where they needed to perform CPR or put certain machines on/in her. I honestly don't even really remember what I said, I seem to blank out in those situations. But, holy...the hospital makes me cry EVERYTIME! Its a reminder of how serious Char's situation really is, and of how many other little sick kids there are too.

As for her cold, so far she's doing OK. She's so tough. She's actually still up, at 1:02am, singing and watching Elmo. We/they have just been monitoring her blood pressure, heart rate, breathing, and suctioning her secretions, seeing what, if anything happens next. Hopefully this is the most extreme the cold will get, and she'll get over it quickly without any complications. Please send good, positive, happy thoughts Char's way.

* Just found out that we're here for at least a few more days. They are worried Charlie could form a 'mucus plug' which she could choke on. She'll be on her bipap (breathing machine) full time, and they are performing chest physio a few times a day on her, trying to loosen things up. Again, the doctors went over what our wishes are regarding life saving techniques...and it's got me emotional. We went over the positives and negatives of all the possible interventions, and it really hurts to think about...the doctors have warned us that a seemingly happy and healthy looking SMA baby can go from good to bad really fast, and without warning. Hopefully we're a long way away from any major decisions having to be made/carried through.

Happy 15 month birthday Charlie! You're a very strong and brave little girl, and we love you so much!!

Go Charlie Go!

2010-09-15T18:37:00.000-07:00

(Charlie, 13 months)

As i've mentioned before, I have an issue with tears. Whenever I get emotional or upset and cry, I always make an excuse for them. I'm totally the kind of person who blames things like onions for springing the leak...which, is always, in retrospect, even more embarrassing then just saying, "Hey, I'm sad, I'm crying." case closed. But, NOOOOO , I have to come up with excuses like: "Oh, can we hurry up here (while crying) I have PMS" (this was said on my wedding day) or, "I'm just really tired and I haven't eaten much today." (which I said this past weekend after I finished the Adventure Challenge, and my friend Sarah whispered in my ear that she was very proud of me, while hugging me, which pushed me right over the edge and broke the seal.) I usually try to avoid things where I know feelings will have to be shared. I have friends that live in other provinces and countries, and when they've been in town and they are on their way back home soon, I intentionally avoid the last get together or phone call, so I can avoid the hugs and mushiness. Sad but true. I've realized that the more I make excuses for my tears, the less I release, and then the more I "leak" at the strangest times...like, "why the hell is she crying, she just bought a slurpee and a People magazine?" kind of times. Luckily, Charlie coming along has changed things, but I still have a long way to go. I'm currently challenging myself to give more hugs (which although still scarce, have doubled since her birth) and to cry when I want to without making excuses for it.

The Adventure Challenge was amazing! I ended up raising more than $10,000 and my team almost $14,000. We were in first place for sponsorship as a team and as an individual. It was much harder than I thought it would be, but so worth it. What a rush it is to push yourself past your comfort zone and complete something you've been planning to do for months. AND, I won a beautiful bike that I'll be using to train for next year with!

But, with the end of the Adventure Challenge, comes the beginning of too much time to think on my hands. It isn't just for Charlie and 'the cause' that I've been busy writing to the papers and competing in the Adventure Challenge for...I HAVE to do these things or I'll just drown in my thoughts. Helping her helps me. I totally get why people who experience tragedies often change their lives for the better because of it...if they don't, then what? To me, when you've gone all the way down, down, down, there's only one way left to go. And, I don't even know if it's a completely healthy way to be or think, because I imagine that sitting with yourself, and really working through your thoughts and feelings is probably healthier, but hey, this works for now, and when it doesn't, I'll check out my other options.

We took Charlie to the doctor on Monday and today. They wanted to do a swallow test on her. At first we thought it was to see how her disease has progressed, but then we were told it was so that we could, if things looked good, start giving her tastes of food. In order to perform the test they need to put fluid in her mouth, which is risky in itself. So, Matt and I discussed it and we decided against it. It's been four months now since Charlie has eaten orally, besides the odd smear of birthday cake icing, so why would we start now, knowing that SMA is a progressive disease, meaning things will only get worse from here. Charlie seems happy with her tube feeds and we don't want to introduce tasty foods, just to take them away from her again in the near future. Is it better to have tasted and to never taste again, or to never have tasted at all? Hmmmm.

SO...Charlie, despite the weakness in her arms, has now officially learned to wave! I don't think I've ever been more proud! It also happens to be the cutest wave I have ever seen! It's things like these that keep us feeling optimistic for the future...seeing progress in Charlie, regardless of a medical diagnosis that prepares us for the opposite, makes us beam brightly with pride and love. Go Charlie go!

Here is a the link to the Adventure Challenge video and Global news interview:

Adventure Challenge video:

http://vimeo.com/14896410

Global news (click on 'sat/sun news, then on the 'grand fondo' video:

http://www.globaltvbc.com/video/index.html

Everything happens for a reason?

2010-09-08T23:00:00.000-07:00

(Charlie, 14 months)

I've used the term, 'everything happens for a reason' without thinking about what it really meant, for as long as I can remember. Usually it's my answer to things like break-ups or losing jobs...and quite often I've said it for lack of a better answer. But, I would like to think the universe has a plan for us all and it's our path no matter how hard we try to deviate from it, and it's filled with only the best intentions. But, if that's actually the case, then why would we have to suffer through cancers, abuse, divorces, homelessness, war, poverty, natural disasters...and Charlie being sick?

When Charlie was first diagnosed and we were told she probably only had a few months to live, there was absolutely NO way I was thinking, 'everything happens for a reason' on the contrary, I was thinking something more like, "f*ck you universe! you suck and you're evil!" But, as time goes on (and of course, it helps that she's still here, and I could and probably will change my tune in the future) I can sometimes begin to believe that 'everything happens for a reason' again...but only on the good days. It's still mean, and it still hurts, but sometimes I think I'm getting it. My life has more meaning, and I'm a better person because of her...and, I have to believe that it's all happening for a reason.

We were out for dinner tonight with our friends, Mike, Kim, and Dana. Kim and I started talking about this, 'everything happens for a reason' theory, and we were both pretty much on the same page regarding it. I trust that Kim knows what she's talking about because she lost her mother to cancer several years ago after taking care of her for months, while her mother struggled painfully through her final days. If she says she can still believe things happen for reason, it really gives me hope. She's been there... she's hurt so bad, and felt like her mother was stolen from her way too early, but she's come through it with a changed perspective and a beautiful outlook on why these things happen sometimes, and she uses her situation and pain to relate to and empathize with others (such as myself and Matt) in similar situations ...and I feel immense relief just knowing that it's possible to lose someone and miss them dearly, and still carry on.

I would not be who I am today if it were not for Charlie. She came here to teach me and Matt and YOU about ourselves, and to show us what's important, and what we're all capable of. My friend Cindy called me the other day after she'd read the newspaper article about the Adventure Challenge and the fundraising me and my team mates were doing for Canuck Place. Cindy told me she was proud of me and reminded me of how, when she came over shortly after Charlie's diagnosis, I had said to her, "I'm not one of those mothers that fights with the teachers or doctors to get the best care for my child, I'm not the type to 'do something' ". I did say that. But, I had underestimated the power of the mother/child bond. I have since 'fought' with doctors, and I have since raised awareness about SMA, and...I'm doing a TRIATHLON for a children's hospice on Saturday! Who am I?! I don't even recognize myself anymore, but I like this Cherie more than the one that existed before Charlie. It's bittersweet though. I'd take the old Cherie and a healthy Charlie over this 'new and improved' Cherie and sick (but GORGEOUS!) Charlie, any day!

And so continues my love/hate relationship with 'everything happening for a reason'.

Reaching out.

2010-09-05T22:51:00.000-07:00

(Charlie @ 13 months, Photo by Randal Kurt)

The past couple of days, after the articles came out, I've received some very touching emails. Some were from people who wanted to let me know that they had read the articles and were keeping Charlie in their thoughts, and some were from people sharing their experiences of SMA and loss and similar painful situations. As much as I wouldn't wish this disease or any other illness that plans on taking someone's child from them long before their time, on anybody else, it's very comforting to know we're not alone in this situation, and I think they feel the same way too.

I'm posting two emails from two different women (I asked them for permission first) that really stuck out to me and makes talking about Charlie and SMA publicly, no matter how painful sometimes, totally worth it. It's nice to have people to lean on who can understand what we're going through.

These are the stories of two incredibly strong women that I hope can make someone else reading this, in a similar situation, feel a little less alone as well.

Hi Cherie,

I came home from work today and the first thing my husband showed me was the Province. I saw you and Charlie on the front page and read "Brave Baby" and wondered what happened? Then I read further and realized that your daughter has the same thing my son had. My son Marcus was also born with SMA and was also a type 1 diagnosis. Marcus was born on May 29, 2006 and diagnosed when he was 4 months old that he had something called SMA...we had no idea what it was and how serious it was. In short, our dear boy didn't live very long even though they said he'd have 50% chance of surviving until he turned 2...is that what they still say? Marcus was 7 months 1 week old when he died. He died on Jan. 5th 2007.

When I first found out that Marcus was going to die, I told my husband that I didn't want anymore kids because I didn't want to take the chance of having another SMA baby. But after Marcus died, I realized that I had to give Tia a sibling. Marcus was my 2nd child and Tia was my first. She was only 2-1/2 years old when Marcus died.

It took 6 months before I felt ready to try again and the second month we tried, I was pregnant. But 6 months later I had a miscarriage. We waited a few months and then tried again. The second month I got pregnant again. I was happy but I was scared. My doctor suggested I do the CVS (I think that's what it was) at 11-1/2 weeks because I wanted to find out if this baby had SMA or not. We made the CVS appointment for Wednesday but I had to go get an ultrasound done on Tuesday before the procedure. So I go to he ultrasound place on my own (husband was working) thinking it would be a quick appointment. I start getting nervous because the technician is taking longer than normal. I thought "my goodness...is the baby not growing? Am I going to have another miscarriage?" I couldn't wait any longer so I ask her "is everything ok?" She says "I'll be done in second." Finally she turns the monitor so I can see and starts moving the ultrasound gadget on my belly and says "here's one heart beat....and here's another...you're having twins!" Oh my god...I just started crying. The technician got worried and asked if I was ok and I quickly told her that I had a son die when he was 7 months old so to now be told that I was having twins was a miracle. Unbelievable right? I was happy yet I was scared. What if one of them had SMA? I have a 1 in four chance of having another with it. What if both babies had SMA? What would I do? It was so scary. Since having the CVS procedure would increase the risk of miscarriage, we decided to wait until I was 15 weeks and had the amnio done. We then had to wait another 4 weeks to get the results Man, those were the longest 4 weeks...but we were given wonderful news that not only did neither of the babies had SMA, I was having one boy and one girl. I was thrilled. Not that the boy would replace Marcus but I was happy that I had another chance at raising a boy...this one without SMA. The twins were born on Feb. 19th, 2009. Jake was 6 lbs 13 oz and Katie was 6 lbs 11 oz...both very healthy and no SMA. Today they are 18 months old and healthy. Tia is now 6 years old and is a wonderful big sister. She only remembers Marcus through pictures but she'll never forget her little brother. We always tell Jake and Katie that they have a big brother too. We don't want none of our children to not know Marcus so we make every effort to talk about Marcus and remember him. He too was our little angel and we like to think that he gave us Jake and Katie.

Losing Marcus was very difficult but I stayed strong for Kent and Tia. People were amazed at how strong I was but when you're told that your child is dying and there's no cure, you just need to stay positive and enjoy every single day you have with your child. I just want to say, stay strong, enjoy every single day your have with little Charlie and stay realistic.

It was so hard when he died but after the first year it got easier. I think about him all the time but try not to talk about it with people cuz I start crying...like I am now. I miss him dearly but I know he's in a better place. If this didn't happen I would have Jake and Katie right? But I wish I didn't have to lose Marcus to get Jake and Katie.

Sorry I just rambled on and on about stuff, but I just wanted to send you an email to say that I understand what you and your husband are going through cuz I went through it already. I'll think about you guys and Charlie from this day forward. Take care and cherish every moment you have with her.

Sincerely,

Julie

And here's the other letter...

Hi Cherie,

My mom came across your newspaper article today and passed it on to me. I have been at my daughters bedside in the NICU at BC Women's hospital since her birth over six months ago, Gemma was born with a neurological muscular disorder. They first believed her to have SMA type 1 but the results came back negative and she remains undiagnosed. As with you and your husband, it is a rare genetic disorder that we have passed down to her even though we have no known history of muscular disorders in our family.

Gemma does not have the regular path that most children with muscular disorders have, which is to be born somewhat 'normal' and then get weaker over time. Gemma was born extremely week and has gained quite a bit of strength over time but is ventilator dependant and has low muscle tone.

Your story is inspiring and helps make me feel like we aren't so alone in the world, especially when you wrote about how it feels like these children are 'trapped in their own bodies', that really hit me because that is how I have described Gemma to others. She lives mostly through her eyes, looking at everything and trying to use the strength she has to touch and grab at things.

We have been involved with the Canuck Place as well, they have come to the hospital to see Gemma and be involved in some of our meetings. They consider children with muscle disorders 'terminal' as you know because they are expected to have a shortened life and Canuck Place is involved as palliative care. I was so scared to have them involved at first, I thought they got involved just to try and convince us of 'ending care' by extubating Gemma but there is a lot more to Canuck Place than I thought.

We have decided to continue Gemma's care and let our daughter decide her path. She has come so far and we will do what it takes to help her as long as she is comfortable.

Even though I don't know you I feel like I know you already, I can really connect to your life and what it is like to be in this position. It is so devistating as a mother and first time parent but even with the heartache I am so happy, I love her more than I could ever describe and know that she is here, as Charlie, to teach us all something. They are the most innocent, beautiful souls that will have more meaning in their short lives than we could ever hope for in a lifetime.

Thank you for sharing your story and your blog. I started a blog recently that just has e-mail updates that I had sent family but it gives others a better idea of what Gemma has gone through and to see her pictures ( http://gemmabostik.blogspot.com/ ) If you are on Facebook please feel free to add me.

I hope that we can be in touch, take care and hugs for that beautiful Charlie girl :)

xo Amanda

Thanks for sharing your stories ladies, means a lot to me. Much Love!

Muchas Gracias!

2010-09-03T14:40:00.000-07:00

(Charlie, 13 months. Photo by Randal Kurt photography)

This past Wednesday I decided to write a letter to some of the news outlets around Vancouver. I wanted to bring attention to Charlie and SMA as well as the Adventure Challenge my friends and myself are taking part in on Saturday, September 11th. By Thursday morning the Vancouver Province, Vancouver Sun, and City TV had called back! I knew that this issue and the challenge would make for interesting news, but I certainly didn't expect three outlets to call me back...and so soon! AND, both of the newspaper articles were out by this morning...and we were on the FRONT PAGE of the Province! So amazing!

Starting at around 10pm last night, after the online versions of the interviews were released, my email, my blog views and comments, and my sponsorship for the challenge began to blow up! Amazing what a little press can do! I want to thank everyone who's sponsored me, everyone who'd like to sponsor me but can't afford to right now, everyone who's emailed kind words and good thoughts, and everyone who is rooting for my family...I love that you love Charlie, but I can definitely understand why! She's an amazing little angel who has proven she's here to change hearts and lives.

Please watch City TV Monday for our interview from Canuck Place Children's Hospice.

I will leave links to the two newspaper articles and the adventure challenge sponsorship page, below. Thanks everyone!

www.adventurechallenge.ca

http://www.theprovince.com/health/Parents+terminally+baby+raising+funds+Canuck+Place+Children+Hospice/3475553/story.html

http://www.vancouversun.com/Vancouver+fighting+daughter+stricken+with+rare+genetic+illness/3475850/story.html

That's what friends are for.

2010-09-01T23:22:00.000-07:00

(Charlie, 14 months old)

On Monday my friend Christie and her daughter Dani came over for a little visit. Christie and I have been friends since we were 12 years old and were pregnant with our girls at the same time so we have an extra special connection with one another and each others daughters. When we were pregnant we would often discuss our adjoining futures...our kids were gonna go to the same school, be best friends, have sleepovers, we were going to swap free childcare...so when Charlie was diagnosed, both of our dreams were shattered, Christie was almost as devastated as Matt and I were...as sad as that was to see, it felt good to know and see that someone was as attached to baby Charlie almost as much as Matt and I were. I felt loved and understood. Christie has been super supportive of everything that we have been going through since Charlie's diagnosis...she is always the first one at the hospital to support us, as well as the first one I call when I'm feeling really upset about it all. I read a quote on one of the grief websites I frequent that said, "You will be surprised at who will be there for you, and you will also be surprised at who will not." And, I can totally agree with that statement. I am surprised at who is not there for Matt and I, but luckily, I'm mostly pleasantly surprised by who is...and Christie has definitely surprised me in wonderful ways. Thanks Chris!

Christie had a very difficult delivery with Dani, and because of that, Dani now suffers from chronic bronchiolitis. Whenever she gets what is considered a minor cold to most children, it quickly turns to bronchiolitis, thereby sending Christie and Dani off to Children's hospital yet again. Because of this Christie has always been VERY careful about monitoring Dani's health and letting me know if it is unsafe for me to come around with Charlie. This past Monday was the first time the girls had been indoors together since mid May. But yesterday morning Christie texted and called me so upset because Dani had woken up with a cold that neither of us saw coming. While she was feeling bad for me, I was feeling bad for her...and terrified for Charlie. You see, if Charlie was normal I'd seriously let her share ice cream cones with other kids, but she's not, so every sneeze, every cough, every clearing of the throat I hear, sends shivers down my spine. So, we quickly stripped our bed, did all the laundry, bathed Charlie, used a saline solution to clean out her nose, cleaned the house, and now we're waiting...but, so far, we're good. Hopefully Charlie is OK, and if she is, I'll actually be glad we had this scare...it showed us that we were getting a bit too lax with Charlie's care and that we need to reevaluate our precautionary measures, both for us, and our friends.

After we hung out at my place for a bit, Christie and I headed to Urban Fare for coffee. When we were sitting down talking, Dani in her highchair, Charlie in her stroller, I looked over and saw a young couple laughing at Charlie...I looked at Charlie who was just staring at the fan overhead, and then back at the couple, the guy looked at me smiling and laughing and said, " She looked all distressed there, she was just breathing all heavy, and looking all over the place." Did I mention he was LAUGHING?! I smiled uncomfortably and just turned my head in Christie's direction and she quietly said, "ummm awkward." "Yup." I said a little shocked. Who laughs at a baby who's "distressed and breathing heavy" but, at the same time, I know they didn't mean anything by it. Christie and I just thought, "Wow, we could have just ruined their day by saying....." But, we didn't. And that's the thing, uncomfortable situations like these arise often, and I always find myself trying to protect the other persons feelings, when what I really want to do half the time is just explain what's going on with Charlie and get it out of the way...but, at the same time I derive secret pleasure from Charlie still appearing 'passable' to most folks. Often people just think it's Charlie's quirky character that makes her stand out or exhibit certain behaviors...like the woman on the elevator the other day who said, "look at her just giving me the peripherals", not knowing that Charlie can't actually turn her head to look at her and has to stretch her cheeks flat and make that little thinkers face while looking out of the corner of her eye to get a good look at you. But, we just smile and nod, because 30 seconds on an elevator just isn't the time or place.

The Adventure Challenge is in 10 days! There are now four of us ladies on team "Charlie's Angels" With over 8500$ in donations and more on its way! We are in first place as a team and I am in first place as an individual...and the competitive part of me is so proud of that! I will be sure to post the details soon after the race, and knowing me, probably a little video too. Time for bed, I've got heavy training in the morning.

On the road again.

2010-08-27T22:03:00.000-07:00

(Charlie, 13 months, with mom & pops. Photo by Randal Kurt)

There are good days, and bad days, and bad days, and bad days, and good days. And lately, good days. Ahhhhh...we really needed these good days. We had a fantastic time away at Black Mountain Ranch. Matt and I had almost literally been at each others throats for what seemed like forever and then FINALLY...we weren't. We went away together and were able to climb back up the rope that just days before, we were at the end of. Vacations are glorious little escapes that really don't get the credit they deserve, they should be mandatory for couples, especially families. Maybe the world would run a little more smoothly if we were all forced to take time off and go away, especially in times of stress. Matt and I spent our time making future plans, staring at Charlie, showing her horses, taking her swimming, and oddly enough, for a 14 month old child, taking her on her first swing. That was an especially emotional moment for us...I sat on a swing, put Charlie on my lap, and swung back and forth, back and forth, while she smiled and giggled...and then I started crying. It was a little bit of happy and a lot of sad cry. I was happy she was so happy, but sad because she was so happy, and I couldn't help but think about a time when we won't be able to do this anymore to make her happy. Matt was a little caught off guard with my tears and instantly realized how much this situation has been affecting me and began to console me and promised to try to be more understanding of my own personal anguish about Charlie, and in that moment I too realized how invested in Charlie and I he really is, and where his angry outbursts at life are coming from...so, I'm also going to try a little harder to be understanding of his pain and pressures.

Lately though, I've been feeling a little stagnant. Talking to some of my stay at home mom friends, I realize this is a common conundrum. I want to be the best mother I can be to Charlie, but I still have that nagging desire inside of me to do something else as well. I had just finished school before Char was born and I feel the urge to use it, to get up, get ready, and get going to work, to make money and contribute to our household. But, at the same time, I feel selfish and confused in thinking this. Why would I leave the house 3 to 5 days a week for 8-10 hours a day to go to work in the social services sector, when I have my own sad story at home that needs taking care of? And, because our time with Charlie is so short, why would I go and shorten it even more? I don't want any regrets, and If I answer my own need for individuality and independence and something happened to Charlie while I was working, I'd NEVER forgive myself, when she does pass away, will I forever punish myself for not taking advantage of all the time I did have with her, instead putting my own needs before hers? What kind of job could I get? "Umm yeah, I'll work really hard for you, except when I have to take months off at a time to sit by my terminally ill child's bedside when she catches the common cold." I'm not sure how well that would go over. I think that one of the main reasons I've even been feeling this way is because when Charlie was first diagnosed we were told she only had a few months to live, it's 8 months later and she's still here. She's the only baby I've ever raised, so this is all I know, so I'm kind of getting used to it. This is the way my daughter lives, this is what she needs, this is how she eats, and this is how she plays. And because we haven't had any major scares yet, I think my brain has sort of tricked itself into thinking she's disabled, not terminally ill. And I only ever realize the difference when she coughs, or tries too, and I see her eyes water and her gasping for air...when I see this I'm reminded of how weak she really is and how fortunate we really are that she's still here and to NEVER take it for granted.

I am also reminded that Charlie is not like other children when I spend time with other children. I was at a friends the other day and she is in the early stages of potty training her daughter. Obviously, I'm aware that this is the natural progression for a child, but since having Charlie, and then finding out that she was sick, it had never really occurred to me. And when it did the other day, I felt ripped off again. I guess i just sort of feel like a hamster on a wheel...like we are just going nowhere fast. And I hate admitting that...I feel guilty. But, it all just seems so futile to me sometimes. There will be no potty training for Charlie. No crawling. No walking. No daycare worries...I mean, at this point I've been secretly praying she even stops growing. She's been growing like a weed! And, in a perfect world I'd invite and encourage it, and be proud of it, but I don't want the day to come where I can't safely pick her up anymore...If she's going to be sick and weak, I want her to always be my little baby, so I can always hold her close to me.

Our travel plans for the fall/winter are still a work in progress. All we do know right now, is that we are scared shitless of cold and flu season and we need to escape as much of it as possible. But how, we really don't know yet. We tossed around the camper van idea, but being realistic, Matt and I have a hard time getting along in 1100 sq ft...I don't think cramped quarters long term is the solution for that...but, I'll never say never. We're doing this for Charlie, not for us, and if that's what it takes, we'll do it. There are a few other options we're mulling over, so we're just doing our research right now and seeing what will work best for all of us. All I know is that I can smell fall out there and it's making me anxious...we need to work something out FAST!

I just bought a book that was recommended by a friend called, 'The Boy in the Moon' by a Canadian author, Ian Brown, it's the true story of a father who's son has a very rare genetic condition...I'm gonna go lay down in bed next to my sweet Char and crack it open now.

Here's the link to our Black Mountain Ranch video/slideshow:

http://vimeo.com/14473164

Happy 14 month birthday Charlie-Anne!

2010-08-21T23:00:00.000-07:00

(Charlie 14 months, and mommy, Bowen Island)

Tomorrow is Charlie's 14 month birthday. We are going to stay at a friends place at Black Mountain Ranch for 3 days, so we'll be celebrating there. Matt and I just finished our solo summer vacations, so we're looking forward to relaxing out of the city, all together as a family, and we're feeling pretty fortunate that our friend offered her place to us...thank you Leslie!

Last night I took Charlie to Bowen Island for the night. My friend Amie just moved into a stunning place there and another friend, Meaghan and myself, and our kids went for a sleepover. It was lovely. My favorite part was just watching all of the kids play together. I don't know what it is, but kids seem to know that there is something special about Charlie...they just seem to be particularly drawn to her, and they're so loving and gentle with her. It just melts me to watch Charlie interacting with other kids. She is so intrigued by these tiny people that run around at a hundred miles per hour, scanning the room for something new to put into their mouths. And she always chats more when other kids are around, and it's so cute, like she's showing off or thinking, "finally, somebody who can understand me!" And I realize that this is probably nothing out of the ordinary for parents of 'regular' children and that their children also react to their peers in the same ways, with excitement and vigor, but that's exactly why I savor it so much...because despite everything that is going on with Charlie and the fact that I/we can often feel so left out of the norm..it's so beautiful to witness Charlie developing just like any other child in a lot of ways, and that her likes and interests are pretty much the same things any other kid her age appreciates.

I am so in love with my little red head. She is such a calm and relaxed little girl who almost never fusses. This might be an unhealthy way for me to think, but Charlie really is my best friend, I spend more time with her than I do with anybody else...all day today I kept looking at her and thinking, "I would literally push, pull, or drag you around with me for life Charlie...and proudly!" And I would. I mean, obviously a cure would be nice, but if it doesn't happen, I will be doing my best to keep Charlie happy and healthy and here.

I'm gonna keep this short and sweet, we've got an early morning...Happy Birthday to my sweet, sweet, sweet, angel girl. I am so grateful you're mine. I love you more and more everyday Char, and so does your pops. Thank you for choosing us. xo

Quiet Time.

2010-08-16T00:12:00.000-07:00

(Charlie, 13 months, photo by Randal Kurt)

Man, this blogging is getting harder and harder to do. When I first started this 6 months ago I had promised myself i'd write a new post at least twice a week, then as time went by, I revised my goal to once a week...now, it's just whenever I can muster up the emotional energy. I think it has a lot to do with my recent moods...kinda sad, mostly sad, a little sad, a lot sad... I NEED to write when I'm sad, but at the same time, I get so annoyed with myself when I can't appreciate what I DO have in Charlie and this situation...and then it leads me straight down guilts path. And lately, because I'm mostly sad, and I spend most of my time being sad, why do I wanna write about being sad when/if I get a little break from it? But usually, even though I procrastinate and it's difficult to get started, the sad thoughts seem to flow out of me like a roaring river in a hurry to get somewhere, which almost always leaves me temporarily drained of my sadness. And I like that part.

I had a great time on Salt Spring island. The first night my friend Libby and I stayed in a remote little cabin where we drank wine, played cards and danced. The following two nights our friends Ivan and Marco came and joined us in a condo by the beach that we had rented. I met Ivan and Libby years ago at a Greek restraunt I used to work at, and they've since become really close friends of mine. They have been really amazing to me and Matt regarding Charlie...Ivan comes over often and makes us authentic Mexican food and takes me out whenever I need to relax, and Libby has joined the Adventure Challenge triathlon with me and we have been spending a lot of time working out together and talking about things. She's 8 years younger than me and has no children, but you'd never know it by her mature, empathetic, sensitive and compassionate nature. In all honesty, I never would have thought that she'd be someone I could lean on in a situation like this, if only because of her age, but she has proven herself to be a very valuable asset in my life. I am grateful to Libby and Ivan and Marco for taking me away and showing me a great time!

This might sound awful but, when I was away I kind of made a deal with myself that I wasn't going to talk about Charlie and I wasn't going to worry about her...I was going to sort of treat this vacation as if I was childless. I know, harsh...but, the alternative would have been to drink wine and cry and have panic attacks which would ultimately have me begging my friends to drop me off at the ferry early so that I could rush home to worry some more. All I wanted was a 4 day break. And I took it, and it felt fantastic...at the time, but then you come home and it's back to reality...a reality that is most peoples worst nightmare.

Obviously there were a few times while I was away that I couldn't help but think about Charlie and how things just weren't fair...the one that sticks out the most is when, on the first morning there, Libby and I went to a little pub for lunch and I noticed a young-ish family there...2 kids, a boy about 4 and a girl about 2...the couple seemed to loathe each other and I watched as they glared at one another and mumbled what looked like evil spells directed at each other. Then, the woman grabbed a napkin and very aggressively wiped her sons face and hands, so roughly that I honestly thought he'd be bleeding after. The boy stood up and she angrily put his coat on, one arm at a time, yanking his arms and shoving each one in like she forgot that they were attached to her son and instead thought they were her husbands face that she was imagining ripping off. The little girl was standing around quietly by this time, looking cute and sweet, just watching her moms actions like this was completely normal behavior. Then the boy got in some passing patrons way, and the mom quietly mumbled to the boy, "get the fuck over here you little piece of shit" with the most insane look on her face. And the dad just sat there and stared into space. I stared right at her, and so did Libby when she noticed I was distracted, and so did the customers behind the woman. And when the woman noticed she was being glared at, she avoided eye contact with us and changed her attitude. I was shocked. And pissed off. Everything in me wanted to stand up and say, "Umm excuse me, I noticed you abusing your kids and taking them for granted...well, I'm just wondering why my baby is at home dying and I love her more than anything in this world and would NEVER hurt her, yet someone thought it would be a good idea to give YOU two perfect, beautiful children!"

I feel guilty for not saying something, but I think we were all just in shock...and scared of her!

When I got home Matt told me that he was so glad to have had the alone time with Charlie. he said it made him fall more in love with her. That made me feel good... knowing that it wasn't just me being selfish, but that it was a good thing all around. But, by the next day, Matt and I were arguing again. We are so stressed. And when we need to choose between working on/dealing with Charlie stress or marriage stress, Charlie stress always wins. And, there is just absolutely no way that we could manage both at once, so i'm just praying that kind soul who gave that evil woman two beautiful, healthy children, will give us a break too sometime. Cause we're tired. Really tired.

Matt's away on Hornby Island right now, so it's my turn to have some private time with Charlie. And so far, so good. Tonight we built a little fort on the floor and watched movies till she passed out, it was a lot of fun. I will say though, that when I'm alone with Charlie, I think too much. I worry and I feel really alone. I've noticed that I'm constantly trying to fill up my days and nights with company, because when I don't, it hurts more. But, at the same time, I still feel a little like an outcast when I'm with friends, Charlie's future/our future is on hold and very uncertain, with a guarantee of darkness. No one wears these shoes. I remember when I got pregnant/gave birth/became a mother I suddenly had more in common with the people who'd experienced childbirth and had children and I was suddenly 'one of them'. And now, I feel more left out then if everybody around me had three children each that they couldn't stop gushing about, and I had none but desperately wanted one. But, sitting here typing this while Char snores beside me, reminds me why it's all worth it. She's STILL here, so we still have a lot to be thankful for.