Wednesday, April 28, 2010


(Charlie, about 6 1/2 months)

When I was 10 years old I developed a severe case of psoriasis on my head. The doctor thought it was ring worm and suggested we put down my dads cat that he'd had for 14 years, assuming I contracted it from her. We did. He then suggested that I cut my long hair really short so that it would allow my head to breathe and it would clear up faster. We did, but we had to go to many hairdressers before we found one that would touch me...the hairdresser wore rubber gloves and my mom had to pay her three times her normal rate. I also had to stay out of school for two months and a letter was sent to all the kids parents telling them that there had been a monster with ring worm among their children and to get them checked asap. After two months, it turned out to be psoriasis. Needless to say, after the doctor asked my mom if he could take a picture of my head for the medical books, calling it "the worst case of psoriasis he'd ever seen" and neglecting to apologize for suggesting we put down our cat, practically shaving my head, keeping me out of school for months, and all the humiliation that went along with his misdiagnosis, my mom decided to find a new doctor. I have two points to this story. The first is that I remember, as nauseating as this may sound, my mom putting baby oil on my head every night and wrapping a plastic bag around it, and in the morning, like a mama baboon, picking my head for hours...this went on daily, for months. Moms do these sorts of things without even batting an eye, it's just second nature to them. I'm that mom now too. I'm willing to do whatever I have to, stomach turning or not, if it helps to make Charlie happy and more comfortable.
My second point is that I never really realized until lately just how much stress can physically and mentally affect someone. For the first time since I was ten years old, the psoriasis' are back, and I have eczema in my ears too. My memory is non existent...I put all my appointments into my iPhone and I still forget. Last month I made the same appointment twice, for a nurse to drop by the house, and I stood her up both times. Today I texted Charlie's nurse wondering where she was, but I had the wrong day. And the other day instead of putting eczema cream in my ears I put "Jack Newman's Nipple Cream" in them (3 days in a row!). I lose my train of thought mid sentence, am easy to snap, and am having a lot of weird nightmares. I think that it's a cocktail of stress, lack of sleep, and just general mama brain...somethings got to give.

We took Charlie to see her pediatrician yesterday. She's lost a little weight so we need to monitor it more regularly to make sure we're feeding her enough through her g-tube. It's a science when it comes to SMA babies and their need to make sure they are getting enough nutrition while at the same time making sure they don't get to much and become too heavy because their weak chests can't handle the extra weight. So, we're working on perfecting her diet. It was a bit of a sad appointment because we realized that her sucking reflex must be dwindling, otherwise her weight would not have dropped because we've been feeding her both by g-tube and breast...if anything, she should have gained weight. At least we know that we chose the best time to get her g-tube surgery.

We had a couple of research students who work in genetics come over yesterday. We have agreed to be a part of an on going study that follows parents who have children with rare terminal illness'. At first I didn't want to participate, but then I thought why not? They plan on using the information they compile to better provide help in the future to families who are in similar situations. I've done my good deed for the year i guess.

I have been getting emails and messages left here on my blog from a lot of people who have either gone through/are going through a similar situation to my family's, as well as from just genuine kind, compassionate people. I just wanted to say that I appreciate every one of your messages and all of your words of praise and encouragement. It means a lot to me/us and sometimes, it really is one of the only things that keeps me feeling hopeful and optimistic. Thank you kind strangers and friends. xo

Monday, April 26, 2010


(Charlie at about 8 of my favorite pictures of her)

I just finished taking Charlie for her daily stroll. I can smell summer in the air and it's getting me all excited! We were told by our respirologist that Charlie still has a few months before she'll need any machines, such as bipap (to help her breathe) and I hope that remains true, so that we can have one last somewhat 'normal' summer. Although, I think we'll always want one more summer, one more fall, one more winter...I don't think we'll ever feel completely ready to hand her over to the awaiting, open arms of SMA.

On my walk today a woman peeked in Charlie's stroller (she was wearing her pink sunglasses to protect her eyes because she can't turn her head out of the sun anymore) and said, "Wow, this is the age you start putting sunglasses on them, huh? That way they'll get used to them and they won't pull them off." I just nodded and said, "Yeah." And smiled, but felt like stopping her in her tracks by saying, "Oh no, if she was physically able to pull them off she would, but she's paralyzed and weak because she's got a rare terminal disease. Have a good day." Those thoughts go off in my head constantly. I also shared the elevator with a few people today and an old man looked at Charlie and said, "What a happy little guy, life is great so far." And I again wanted to say, "Um, not so much, SHE's dying!" And the other day I was walking up Granville street and there were a group of religious people being really aggressive and trying to hand me a pamphlet, I said, "No thanks." But what I really felt like saying was, "Why would god want to kill my baby? How great could he be? Apparently he doesn't like me very much." And again, I realize that no one intends to hurt my feelings, and these questions and comments are the usual banter that we all share with one another, strangers and acquaintances, but I guess I just feel particularly quarantined from the regular folk now. My family is not like most, so the usual everyday banter that most people indulge in, often isn't appropriate for us, and I can't always help feeling angry towards innocent people. I do realize that no one means any ill will towards us, but I'm just being honest about my thoughts here. I realize that there are many people dealing with many situations on a daily basis and I've said something unintentionally insensitive to them as well. That's the nature of strangers sometimes.

I'm supposed to be weaning Charlie from nursing right now, but like a lot of mother's, I'm finding it difficult. We don't give her bottles anymore because the flow is too fast and it's possible that she may choke and get the milk in her lungs. Nursing has a similar danger, which is why I'm trying to wean, but, besides Charlie's 4 teeth getting in the way, I just love doing it. Sometimes I'll be working on the computer and I will just look over at her in her chair watching Sesame Street, and I will get the intense desire to go and pick her up and nurse her. She just looks so beautiful and innocent when she's nursing...I stroke her hair and tuck it behind her ears while she stares up at me with her gorgeous big blue eyes that seem to be saying, "I love you mom." And I can't help but melt. I'm also afraid to start feeding her from her g-tube full time, it's not that the act of actually tube feeding her bothers me, it's just that it's not natural and like I've said before, I don't look forward to having to do it in public, it will make people feel uncomfortable, which will make me feel uncomfortable. But, I guess I'll just have to suck it up and get over it.

The other day I was talking to Matt and I said "OK" and all of a sudden Charlie said, "Mmm K" and Matt and I just looked at each other like, "Did you hear what i just heard?" And then we thought that we must have been hearing things. The next day it happened again! So, we realized that we are now the VERY proud parents of a beautiful 10 month old baby girl that says OK. Whenever we find ourselves focusing on all the things Charlie will never get to do, she shows us that there is also a lot of things that she IS going to do. She has amazing timing, and a way of turning our pessimism off and our optimism on.

Saturday, April 24, 2010


(Charlie at 9 months)

Well, Charlie's first birthday party planning has officially begun. Because we were initially told that she would most likely not make it to her first birthday, it's a pretty big deal to us! My best friend Anna and her boyfriend Jon live in a gorgeous building with a huge grassy rooftop deck with BBQ's and they generously offered to host the party there, which we took them up on...we want it to be the kids party of the year! We are really looking forward to seeing Charlie's face as she watches all of the kids go bananas! We also plan on accepting donations, rather than gifts, that will go to Canuck Place.

As of May 1st Matt's job position changes. He will only be working 3 evenings a week rather than the 50- 60 hours he has been working. We are very excited about this. We discussed it and we just feel like if we can afford to do it, we should. It will give us the opportunity to spend as much time as possible with Charlie and share in her care. We feel very fortunate that we are able to do this. We are looking forward to making some amazing memories with Charlie this summer. When we were at Canuck Place they were looking into getting her into the Baby Beluga swimming program, so we're just waiting to hear back about that. It would be great if both of us could join her for her classes, she absolutely loves water because she can move her arms and legs easier.

I have been having good and bad days lately. It's strange, sometimes I feel like I'm just being dramatic about everything that's going on, and then other times I realize that I'm not being dramatic enough. When we were at Canuck Place I went downstairs for dinner and Matt went to get Charlie from the nurses ward, when he walked in Charlie was in the arms of a nurse sitting in the family room with all the other children/clients who were very obviously sick...Matt said that it really hit him then about just how serious Charlie's condition really is. And when he told me what he saw, it hit me hard as well. Charlie's death constantly looms over us. When we discuss the future we find ourselves saying things like, "after Charlie" or "when Charlie, you know" or "if Charlie is still around." I still cringe when I hear someone who doesn't know what our situation is says, "You just wait till she's running around." It's not their fault, it's just the way I choose to hear things and process them, and it really depends on the day and my mood. Sometimes future talk doesn't faze me at all, other days it literally stops me in my tracks and leaves me devastated. I often just wish I had a timeline...but then again, i don't want a timeline at thoughts and feelings are just so twisted and complex sometimes. It's like if someone could tell you when you were going to die, would you want to know so that you could try to do everything you could to die with no regrets, or would you not want to know so that the the looming fear of your impending death wouldn't steal the time you did have left? It's a tough one, and we struggle with it everyday. But she's worth it.

Wednesday, April 21, 2010

Happy 10 month birthday Charlie-Anne!

(Charlie, almost 10 months old)

My little baby is just two months shy of a year old! Where did the time go? When she was on the inside it took FOREVER for ten months to pass, but now that she's on the outside, I blink and a month passes.

I can't help but think about when Charlie was first diagnosed back in January, we were told she probably only had a few months to's been almost four months and she's still here, and still smiling! That being said, I'd sure love to be back on 'pregnancy time' and just slow time down, possibly even freeze it, so I could just absorb all things Charlie. But, I understand that whether we have Charlie two more months or two more years, it'll never be enough time.

We are nearing the end of our Canuck Place stay, and I have to say, although we were initially dreading our time here, it did a world of good. We feel comfortable here and all of the staff and volunteers genuinely love their jobs and want to be here to help Charlie and help us. I went out for a couple of hours on my own today and it was nice to know that a qualified nurse was watching Charlie and that she was well taken care of. Although, I still got that aching pain inside of me reminding me of my short time with Charlie which caused me to miss her and wonder why I even bother taking breaks...there will be plenty of time for breaks...later. I am starting to feel guilty when I am not with Charlie. I worry that I'll regret the breaks later, and the morbid side of me worries that she'll die when I'm out for lunch or while I'm dancing at a wedding which will lead me to self hatred and never forgiving myself. I think it's just best for all of us if I choose my Charlie free occasions carefully.

We've been learning to comfortably and confidently use Charlie's feeding tube more often. It's actually not that bad. I would still feel uncomfortable using it in public though...I feel like it would scare people or gross them out, or worse, judge and make assumptions about Charlie. I shouldn't care, but i do. But, it has to happen soon enough, so I better toughen up.

Something I've realized since all of this has transpired and from spending so much time in places like the Children's hospital and Canuck Place, is that if only everybody was able to spend some time with these special children, the world would be a better place. Seriously. I still have many days where I feel ripped off and jealous, but there is a whole other part of Matt and myself that no longer feels punished, instead we feel privileged and honored to have been given Charlie, SMA and all, and to be a part of all of these other amazing children's lives. Sounds cheesy, but it's true. Having had this experience has changed me so much. I have a new found appreciation for life, for parents of handicapped and/or ill children and their caregivers, and for the children themselves...what little troopers and with such amazing attitudes and happy dispositions! Where I once thought, "What did I do to deserve this?!" I now feel rewarded for good behaviour. I still think SMA is a cruel disease, but Charlie is so amazing despite it and because of it. Everyone needs a little Charlie in their lives. She elevates moods and changes people.

Monday, April 19, 2010


(Charlie, 9 months 3 weeks)

I woke up dreading today. A month ago we scheduled a 3 day stay at Canuck Place. We had a quick tour a couple of months back, and although it's a beautiful piece of architecture and is nestled in among other breath taking mansions on a quiet tree lined street, I can't help but think about how my family has met all the requirements to be granted VIP access. I would gladly go back to being a denied no name in the eyes of Canuck Place. But, that being said, if Charlie has to be sick and we have to go somewhere, I'd choose Canuck Place. I am in a beautiful round room with stained glass windows that frame a gorgeous mountain view and is surrounded by big old trees filled with talkative birds. We've met with our nurses, counsellor, and doctor, and they all seem so kind and compassionate. Although I personally feel like we are here a little soon, I know there must be a method to their madness and trust that the timing is perfect. I am open to discovering more about Matt and Charlie and myself over this next few days, as well as being able to really focus on enjoying Charlie and letting the staff take care of us and share in taking care of Charlie's needs with us.

The other day when Matt took Charlie to see his Nana and I was left alone, I felt compelled to look up other families dealing with SMA. I found one family who's daughter passed away at 9 months...she seemed fine, her mom put her down for a nap and she died within 10 minutes. Besides getting me really upset, it got me I've been worrying about Charlie's (and our) change of lifestyle...machines, g-tubes etc. but, we should be so lucky! What if we don't even get the chance to help her with her quality of life? I started to miss Charlie...and it got me thinking too...I began to try to picture myself in the future...I tried to really focus on what it felt like to miss Charlie and told myself this is what I'll feel like after she dies, except, because in the back of my head i knew she'd be home soon with Matt, I couldn't quite touch that feeling completely, but what i could touch, brought on anxiety and a big cry. Upset and emotional, I texted my best friend Anna with my thoughts. She told me, " that's what a big broken heart feels like, absolute shit." And, "that it will come in waves." She's right, it does.

We had a great visit with Matt's dad and step mom, they are lovely people and were so easy to be with. It was awesome to see Matt with his family because in almost 5 years together, I've only seen Matt with his dad once for 20 minutes. I feel like this visit has healed a lot of old wounds and has encouraged a lot of future growth between the four of us (five of us). I can give you a million reasons why Charlie's illness is awful and will negatively affect us for the rest of our lives...but, I can also give you more than a few reasons on how it will/has positively affected us for the rest of our lives.

Friday, April 16, 2010

Life's too short.

(Charlie, 9 1/2 months, with Elmo)

I feel trapped...which is making me feel claustrophobic...which is making me feel extremely anxious. I hate knowing that no matter what we do, Charlie will still only get worse and worse until she dies. There is no hope and nothing to look forward to. Who even thought of SMA? It's such a cruel disease...a child/baby slowly becomes paralyzed until they eventually suffocate, the whole while being completely all there and aware. Just thinking about it I get the feeling that the walls are closing in on me.

We'll never be able to get annoyed with Charlie and say, "Go outside and play."
I took Charlie for a walk yesterday and ended up at David Lamb Park in Yaletown, school had just been let out so there were at least 60 children and their parents there. Charlie loves to watch other kids so I strolled her up to watch the kids on the swings, she did, with a big smile on her face...I just looked around bitter and resentful because to the naked eye, all the other kids were healthy, and I thought to myself, SO NOT FAIR! I left upset and called Matt, I don't like feeling jealous or envious of other people, and I honestly wouldn't wish an illness like this (or any) on any other child. It's a vicious cycle...I have those thoughts and feelings, then I feel guilty for them, then I get angry at myself for the thoughts and the guilt, then I forgive myself, then something triggers me, and the myriad of emotions begins again.

I have had a couple of emails with the women that I met at the hospital the other day...she told me that she has to change her daughters diapers with gloves on because her urine is so toxic and that she's sick from the chemo. Those are the types of situations that I find a little solace in...I'm at least thankful that Charlie doesn't hurt.

Matt and I took Charlie to her respirologist yesterday...he is a 'tell it like it is' kinda man...he doesn't sugar coat anything, which is good, but sobering. He told us Charlie would need Bi-pap (a machine that helps her breath) in a few months and discussed her average life span (2 years old...maybe 3) explained suctioning her secretions, how we'd probably have a few long term hospital stays in the future, etc. Just completely deflating information. Two days ago Matt and I were watching Dave Letterman and Matt was feeding Charlie, she started choking and gasping, I grabbed her and started hitting her on the back and Matt snatched his phone from his pocket and was about to call 911 when it subsided. We both looked at each other with terror in our faces, collapsed back into the couch and stared into space. We didn't even have to say anything to one another, we were both thinking "Holy F*#k, welcome to my life! How is this my/our life? Saving our daughter on a daily basis?" Way too much responsibility!

When we first found out About Charlie, I wanted to get pregnant right away. I couldn't imagine losing her and not being a mother anymore. I felt like I was part of a whole new world with play dates, new friends I'd never have connected with childless, family vacations, etc. But lately, I'm thinking no more babies for me. Besides the stress of all the testing and worry and fear while I'm pregnant (unless i get invitro) I just don't feel like worrying or caring this much about another human being again. I think. Like I've said before, I'm not good with stress, and after Charlie, I think my stress meter will have blown up. That's just this week though, who knows what next week brings.

I have the house to myself right now...Matt took Charlie and his Dad and Jenny to go and see his Nana, we've been on the outs with her for about a month, we just felt like Nana and her son Matt's uncle, were being really insensitive about our whole situation and that they were putting a lot of pressure on Matt to 'be a better grandson' and so the relationship began to dissolve from there. BUT, since all of this began with Charlie we have realized how short life really is, so he's up at Nana's hoping to get things good again, and i wish him luck. In the meantime, I'm going to use this time wisely and take a nap, ALL BY MYSELF! ;)

Wednesday, April 14, 2010


(Charlie 9 1/2 months and daddy, Jericho beach)

Matt said to me the other day, "Hey Cher, you know that amazing feeling you get when you're first falling in love with someone and they 'accidentally' stroke your hand or graze your knee? I get that every time Charlie caresses my arm." Awwww. Because it's so difficult for Charlie to move her arms or grasp anything, it just means so much more when she does it. It is awesome to watch her really concentrate and really try hard to bring her toy up to her mouth or pull the string on her balloon, so she can beam with pride when she sees it bounce up and down. Such a lovely, lovely girl she is.

Charlie's grandpa, Matt's dad Mike, and his wife Jenny are here from the's their first time meeting Charlie, and it's been many years since Matt has seen him as well. This situation has brought Matt and his dad closer together and it's really beautiful to see, and it's also really cool introducing Charlie to her grandpa for her first time and to see where she gets some of her good looks from...but of course, they're still mostly from me. I am looking forward to spending time with them and seeing Charlie bond with her gramps over the next week.

Yesterday our nurse Anita came to watch Charlie for a couple of hours, she comes every Tuesday and Friday now from 10-2 to form a relationship with Charlie. It gives me the opportunity to go to the gym, nap, or grocery shop. While she was here I decided it was probably time to go through the boxes of supplies that Fed Ex has brought us over the past couple of months but i had refused to investigate at the time. But now that Matt and I are taking the "one step ahead of SMA" approach, I've decided to take the blindfold off and pay attention. Anita explained what everything was and showed me how to use the foreign objects. One was a pump that I put on the side of the crib (if she actually slept in one) and it will slowly administer her formula into her g-tube throughout the night, with the general idea being less wake ups/more sleep for everyone. Anita also showed me how to feed Charlie through her gtube...we flushed water through it...I'm not gonna lie, I almost puked. Not so much because I thought it looked sickening, but more because I couldn't stop thinking about how it must feel on the inside for Charlie. Whoa...i just got shivers thinking about it. I asked Matt last night if he wanted me to show him how to flush it, but he's not quite ready yet, that and I think he wants a medical professional here until we get used to it. It'll take a little time to learn to trust ourselves and have faith in our ability to take care of Charlie medically, but it'll happen.

I noticed yesterday that Charlie grins from ear to ear when I sing the alphabet to her. It is so far the only thing I can do to steal her attention away from Sesame Street, and it makes me feel pretty damn spectacular for single handedly holding that key to her's the little things.

Mama's girl.

(Charlie and mommy 9 1/2 months)

I recently entered a little writing contest on how (in 500 words or less) 'creativity and motherhood intersect' in my life. This was my entry:

Mama’s Girl

Somewhere in and around 15 years old, I began surrounding myself with creative types. My first love was a painter and musician, my second a musician, and my husband now, a musician and a writer. I didn’t have a creative bone in my body, but my desire to be creative was all encompassing. I’d hoped that if I rubbed elbows long enough with a poet, or a photographer, I would catch their beautiful and rare gift, but it just never happened…until I had my daughter.

After a fast and furious labor, Charlie-Anne was born on June 22nd 2009. She was gorgeous with a full head of red hair and big blue eyes that captivated people with their intensity and sparkle. Everything about her was absolutely, undeniably, perfect…until about 5 months old when my husband and I started noticing that her once advanced motor skills now seemed to be regressing. After a stay at the BC Children’s Hospital we were given the news no parent should ever have to hear, “Your daughter has a rare terminal disease called Spinal Muscular Atrophy …”. We were obviously devastated. We took Charlie home where we locked the door and cried for three days, forgetting anything other than the three of us existed.

From day one with Charlie she triggered something in me that made me want to live up to my full potential. She helped me uncover a self-esteem inside of me that I never knew I was missing but that I was more than happy to meet. She gave me a sense of purpose, she loved me and softened me up…where I once would shy away from hugs, I now seek them out. I cannot believe what a 6 pound 14 oz red head is capable of. She has changed my life in ways that I never could have imagined, healthy or not.

Because of all that Charlie is and all that she has given me, and the adversity that we are now facing, I have FINALLY, almost without realizing, discovered my creative side to not only help Charlie with her day to day living, but as an outlet for me to relieve some of the stress that her diagnosis brings. We have to be inventive with Charlie’s care, she is weak so we can’t give her regular toys, she plays with feathers, and balloons, and straws. I am always trying to think of new ways to arouse her senses…warm cloths on her skin, bare feet in the sand. I’ve even started a blog about our experiences and feelings in dealing with a child with a terminal illness; It’s become one of my favorite things to do when I get a little time to myself, it’s surprisingly cathartic.

We might only get to enjoy Charlie for a short time, but she’s an angel who has introduced me to parts of myself I’d never have met without her. Mama loves you Charlie, always and forever.

Monday, April 12, 2010


(Charlie and mommy 9 1/2 months)

 has finally begun...I am officially the woman who has one too many glasses of wine and cries. It's happened 3 times in the past couple of months. I don't want to be that woman. I was doing really well at avoiding being that woman. I've always thought that if you drink alcohol and end up crying, you need professional help instead of alcohol. I have always asked myself before every glass of wine "Are you drinking this because you want to enjoy a glass of wine with friends or are drinking this because you want to erase your day or numb something?" And, if the answer is the latter, then I know it's not a good idea to drink that glass of wine. But lately, I'm the woman who thinks I'm just partaking in a little Friday night glass of vino with friends but ends up being the sad bring down by the end of the's uncomfortable for people, and in my head, so embarrassing, and so not cool. So yeah, I gotta work on that...more professional help, less wine, and hopefully, understanding friends.

I've been having nightmares lately. I had one right before we went to Hawaii where I was sitting at a table with all my friends and family and it looked like the scene for The Last Supper, and Charlie was naked on the table and i was cutting her legs open to serve her at dinner and asking Matt to help me carve...very creepy, I know...I woke up terrified and told Matt, he looked at me horrified, I felt dirty and ashamed of myself that my mind was even capable of going there. When I woke up and thought about it I think I just felt guilty about possibly putting Charlie in danger to go to Hawaii, I felt selfish and like I was 'sacrificing' her...anyway, that's what I took from it. I had to take my first Ativan in a year and a half on Saturday night/Sunday morning (I used to get bad panic attacks). I shot up in bed panicking from a nightmare I'd been having...Charlie's legs were working in this one....she was running away from me...I was chasing was a very dangerous environment, the edge of a cliff on one side, sharp side up nails and tools on the other...basically no place for a child to be running free, but I couldn't catch her...I jolted awake, trembling, and yelled for Matt (he'd passed out in the living room) he came running in confused, asked me what was going on, and tried to calm me down. I was FREAKING out, crying and my tongue started feeling like it was twitching and swelling, I started to panic...I asked Matt if he'd mind if I took an Ativan and slept on the couch, I needed a break and a good sleep, I did, and I woke up a little more sane. The lack of sleep and stress is finally catching up with me and it's taking it's toll.

I'm beginning to recognize in myself that I have great difficulty displaying my vulnerability (except on this blog for some reason, I think that's why i enjoy it so much). I'm afraid and embarrassed to really ask for support and help. I'm afraid no one will want to spend time with me if i don't pretend to have everything under control. I don't know how to tell someone what's going on with Charlie without finishing it up with a "But, you know what, it's OK, she's a great girl, and we're going to just focus on the positive and enjoy her while she's here." Because, for some reason I feel like if I wrap the outside of something so ugly up with some pretty paper, then maybe you'll stay in the room beside it a little longer, rather than running as fast as you can in the other direction.

I was telling my friends Lindsay and Susan recently that one of the main reasons I even do this blog is because I feel like if you join us on this journey as we go along, then I think Charlie will no doubt get under your skin and you won't be able to help but love her, and then maybe she wont just be the terminally ill handicapped kid you've heard about, and maybe I won't just be the sick kids mother and Matt won't just be her father... maybe people will be able to connect with us on a deeper level? Because I've heard of the parents with 'a handicapped kid' but I've never been 'connected' with them. I just feel like if I get it all out here, then maybe you'll get to know us better and maybe we can still be 'cool' or 'normal', you know?

Because I managed to get two days in a row of good sleep, I woke up today ready to make a hundred phone calls and REALLY get proactive in Charlie's treatment and care. She needs to get a special reclining car seat made for her, she needs to have a special diet set up for when we decide to feed her full-time through her g-tube, and I've talked to physio and occupational therapists to set up appointments regarding exercises and special apparatus' she'll need in the near future such as a 'cough assist' which we'll use to help her cough when she's struggling to do so on her own. So, all and all, a pretty productive day so far. And, luckily, it's GORGEOUS out, so I'm gonna get Charlie ready and take her for her daily stroll. (SEE...I seriously cannot help but end things on a positive note.) But really, it is gorgeous out. ;)

Saturday, April 10, 2010


(Charlie 9 1/2 months with her balloon AND with Vancouver Canuck, Tanner Glass!)

First off, please excuse me if this post is a little's been a chaotic few days. I feel dizzy and very out of sorts. It's crazy what stress will do to you when you're not expecting it. But, I'm finally beginning to decompress, if only for this week.

Charlie's g-tube surgery went well, even after several hours of fasting she went in smiling and came out smiling. It's really hard to pass your baby over to the doctors when she's so happy and has no idea what's coming, but actually, judging by the smile on her face when we went to the ICU to see her, I don't even think she realized what had just happened to her. Phew. Actually, I'm looking forward to learning how to use Charlie's g-tube, I was really worried that I'd feel uncomfortable or nauseated looking at it, but it turns out it doesn't bother her, or me, at all...just one more thing that makes Charlie special.

There was only one cot to sleep on, so Matt stayed at home last night. Charlie sleeps in the bed at home with us, so she wasn't having any of this mommy sleeps next to her in a separate bed, I ended up sleeping beside her in a 2ft by 4ft elevated crib, and honestly, it was the best sleep I've had since Hawaii. I think this past 2 1/2 weeks of waiting and worrying about Charlie's surgery really wreaked havoc on me emotionally and mentally...I have been functioning on about 3 or 4 broken hours of sleep a night. I've been missing appointments, arguing with Matt, not making it to the gym...just feeling depleted of all things good. But I hope that's over, for now.

This morning after Charlie fell asleep for her nap, I decided to take a walk around the hospital...I just needed a break from the ICU...every time I looked around our situation felt more and more real, that and I couldn't help but fall in love with the other children in the ICU with us. Both had was about 3 months and the other was about 2 years old. The 2 year old was in 'isolation' and was such a sweetheart, blowing kisses to all the nurses and telling them he loved them. It was obvious his situation was life threatening because the nurse had mentioned he had an Elmo DVD made special for him through the Make a Wish Foundation. They were gorgeous happy kids. How can these smiling, happy babies be dying?! I will never understand that. So unfair!

Moving along now...I stopped and had a yogurt at the Second Cup on my walk when I just felt like I was going to lose it...I called my friend Christie and started weeping about those poor babies, and the unfairness of it all...and once again, she listened to me and talked me down.
After I hung up the phone I dragged my feet into the gift shop, just killing time...I wasn't ready to go back yet and I knew Charlie was in good hands. A woman walked in and looked at me like she knew me and said, "How are you? How did your babies surgery go?" I knew I recognized her...was she a nurse? I've met so many people this past few months...that and the lack of sleep has mixed my names and faces memory up. She said, "I saw you yesterday, my daughter was getting surgery too." I then put it all together. We exchanged our husbands names, both Matt, and our babies ages, two weeks apart, and their illness'...her daughter had 3 cancerous tumours in her brain with a 50% survival rate, I told her about Charlie, I started bawling, she started bawling, and we hugged and held each other, rocking back and forth crying, for what seemed like forever. In that moment (and still) I felt like this stranger i had just met understood/understands me better than anyone else in the world right now. She said a few things that were/are my EXACT thoughts. We exchanged email address'. I've never felt more instantly connected to someone. Ever.

We're home with Charlie now. And it's beautiful out! A long walk is definitely the order of the day! Thank you to everyone who sent their positive energy and thoughts out to Charlie, it worked!

Monday, April 5, 2010

Bubble girl.

(Charlie, 9 1/2 months)

I have only left the house without Charlie a handful of times since she's been born, so when I do I have a nagging feeling that I've forgotten something the whole time I'm out. I can even stroll Charlie out my front door, down two elevators to my underground parking lot, snap her into her car seat, close the door, put the stroller in the trunk, get myself buckled in, start the car and drive away, and still manage to have a flash of fear jolt through my body and be thinking, "Where's Charlie?!!" In 9 1/2 months I have not left the house once without that scenario happening at least once on my travels. The obsessive compulsive in me ALWAYS sends my elbow back towards the car seat to do a quick lift of it just to make sure it's snapped into its base, this ritual nicely compliments the quick head pat I must also do just to make sure she's actually in it, and, on longer car rides I also feel her stomach at red lights to check her breathing, which in turn helps my breathing. Ahhh. So yeah, you can probably see why I prefer a third party in the car.

My whole point is that I lived 32 years before Charlie and never felt the responsibility towards anyone or anything that I do to her. I trained my whole life for this. She gives everything more meaning and me more purpose. And I just have no idea how I'm supposed to go back my meaning and purpose. I mean, my elbow is always going to reach for the car seat in the back, my hand for her head, and my heart is still going to stop for a second when I wonder where she is. Just when I have gotten confident in living my life for her, she'll be taken away from me. I can't help but obsess over those thoughts. I will forever be reminded of Charlie.

I realize that I should focus on the fact that she's here now and save the mourning for later. But I can't. I can't help but look at her and want to just protect her and save her and miss her. And I think it's because I know her illness is terminal, there isn't a chance she'll make a full (even partial)'s like pulling the band-aide off slowly. I'm afraid to lie to myself or enjoy the moment because I'm afraid of how I'll react to her passing if I haven't fully prepared myself...even though I have no idea how to do so.

I'm kind of in the frame of mind lately that I want as many people as possible to meet and spend time with Charlie, she's an extraordinary girl and I want to share her with everyone. If I didn't have to overly protect her from germs I would set up a cuddle booth on Robson Street for everyone to come and enjoy her, she's that amazing. Although it's never been my personality to be laid back or easy going, I never imagined myself being this kind of parent either, worrying incessantly about germs and avoiding other children because they're "little germ carriers". I imagined I'd set Charlie free at the kids birthday parties so she could share toys and saliva with the rest of them, but that just can't happen.

Charlie's surgery is in four days. Matt and I are really nervous about it. But she seems to be doing really well lately so we're hoping she comes out of it unscathed. If anyone is reading this, please send your positive thoughts her way. Thank-you.

Thursday, April 1, 2010

New shoes.

(Charlie, 9 1/2 months)

It's 11:30 pm and I've been ambivalent for the last hour about whether or not I should write a new blog post. One part of me says " YES, do it, get it out!" And one part of me says "NO, don't do it, don't open that can of worms before bed!" But I've caved because, even though it often stings to type out and rehash my day and my feelings, I get it out of me and get rid of that electric sensation I'd otherwise have trapped inside of me, coursing through my veins.

Heavy situation or not, I've never liked the night (funny, since I worked at a nightclub for years). I don't really know why, but I think it's because often it just feels like one more day in my life that slipped away from me when I wasn't paying attention. I get a creepy feeling in the pit of my stomach when I see news anchor, Lloyd Robertson come on the late news; anybody who knows me knows that I cover my ears, close my eyes, and change the channel ASAP if I catch a glimpse of Lloyd's overly powdered and rouged wrinkled face or hear his monotone robot voice. Aack! I feel sick and sad just thinking about it.

Matt just got Charlie down to sleep and now he's in his office working on music...he's been feeling really inspired and spends almost all of his free time doing it, it's one of the few things that makes him happy lately. Since we first met, Matt and I both learned that neither of us functions well under stress, I usually react to stress by giving up and going to bed and Matt has a temper and snaps at the little things when he's stressed. The good thing is that we are both aware of our faults and we are really working on them because snapping and sleeping just aren't options for us in this situation. And considering the fact that we really haven't even began to see the depth of Charlie's SMA yet, if we go snapping, sleeping or giving up now, what the hell happens when we're REALLY needing to pull strength out of ourselves. So, we are working on getting as mentally and physically fit as possible to fight off the evil we will be introduced to down the road, which we may be on our way to meeting next Friday when Charlie gets her g-tube surgery.

Charlie was fitted for some splints this past Wednesday. I had a choice of colour and picked hot pink for her. Does it make me insensitive or heartless if I say she looks cute in her splints? Only because they are hot pink and she wears them with a huge smile. Not much fazes that little angel. She seems to be in pretty good health lately, but there is a definite decline in what little head control she had can tell she's becoming more and more paralyzed. Sometimes I look at her and I can see it in her eyes and it makes me feel claustrophobic for her. It's so painful to watch. So unbelievably painful. And i can't do anything about it.

It's this time of night when my brain races and files away the days memos and my anxiety sets in...the fear of the future, questioning my strength and sanity, worrying about Matt and wondering how he's really doing. Are we in denial right now? Do we really get what's going on? Are we using our imovies, pictures, music, and blogs as escapes? But, luckily before I have a chance to answer all of these questions, i fall asleep and wake up next to the most beautiful red headed princess who has the biggest smile on her face and is so happy to see me, and I forget what I was even worried about in the first place.