Friday, July 30, 2010

The Evolution Of Charlie.

(Charlie at the park, 13 months old)

I'm trying to compile all of my photos of Charlie so that none of them get lost along the way. As I was doing this I thought, "Oh hell, might as well make another video!" :)
Check out "The Evolution of Charlie" by following the link below...all photos are by Cindy Penner ( Thanks Cindy!
Here is the link:

Wednesday, July 28, 2010

Summertime blues.

(Charlie, 13 months, Queen E Park. Photo by Randal Kurt)

It's been an emotional, heavy couple of weeks, but I'm happy to report that things are starting to look up.
A couple of weeks ago Matt and I began arguing a lot, and although this isn't exactly uncommon for us (we've both been linked to the terms: fiery, stubborn, hot headed, and control freak) we had been doing pretty well since Charlie's diagnosis. We had come to the conclusion that life is too short to sweat the small stuff and realized that we needed to come together to support each other and Charlie during this difficult time in all of our lives. And things were good. We felt more connected, more in love, and more understood by the other, than we ever had before. Really. I mean, if we failed each other and didn't/couldn't make this marriage work, who else on earth would ever understand what we had been through, we both thought. But then slowly but surely the weight of everything that's been going on started to make both of us double over in shear exhaustion...we couldn't carry it anymore, and we started cracking. We were having a lot of ridiculous arguments and were wondering if it was even worth sticking it out for anymore. We both kind of felt like we were carrying this excruciatingly painful burden around and the other one wanted to hop on our back too. We need to be strong for Charlie...but each other too?! C'mon! Give me a break! I've been known to get impatient and lose it when the waitress at Earl's seems to ignore me and doesn't ask me if I want another drink or not (to my friends at the table, I'm respectful to the servers, I used to be one:)), but I'm supposed to take care of a terminally ill child and Matt? All while remaining calm and patient?! How?! And I know Matt has been feeling the same way...thinking, I'm financially supporting this family, loving my daughter, attending every appointment, and you still want to nag me? No. I don't think so. And that's where we both stood. No. Nope. No can do.

When the dust settled, we just let our outbursts be and moved on. This is probably the most painful and stressful situation anyone will ever go through, so we have to make allowances for that. I've also been giving Matt a lot of nag free time to make music and go for long bike rides. He seems really appreciative of that and is supportive of me going away to the Gulf Islands for a few nights with friends while he watches Charlie, and then he'll be going to a wedding on Hornby Island and will be gone for a few night himself...although we have been discussing Charlie and I joining him as well, we're just a little weary of being trapped on an island with no hospital...but our pediatrician is supporting our decision to we'll see if we're feeling brave enough or not.

Speaking of doctors...we took Charlie to see a dietician last week who, when we told her our reservations about skipping Charlie's night time feeds (there have been studies indicating it is dangerous to fast SMA children longer than 4 or 5 hrs, because they can be depleted of some of the little muscle tone they do have, but the doctors are concerned she could asphyxiate in her sleep) she was very nice but kept insisting that she understood SMA and had worked with children with SMA and although she had read the studies Matt had sent our pediatrician, they were not published, so the medical profession does not subscribe to them. Anyway, by the end of the appointment she pretty much had me convinced that Charlie would be totally fine to go a full 8hrs or so without food, no problems. "Just feed her whenever she wakes up." she said. "She'll know when she's hungry." Made perfect sense to me I thought. I made mental notes of her points and decided to convince Matt on the way home that Charlie can go without food during the night and that she'd be just fine...until we were just about out the door and she asked all excitedly, like from one doting mother to another, "Soooo, is she rolling over yet?!" Matt just looked at her annoyed, and in a monotone voice said, "No, she won't be rolling over, she has SMA type 1." All this while Charlie had been splayed out on an examination table, almost motionless, all day (it had been a 6 hour appointment with all of the specialists) And that was that. I have no problem with a specialist or doctor telling me they need more time to research what I am inquiring about, but I do have a problem when they insist that they know what they are talking about and give suggestions and advice when they are not sure of the implications of it, possibly putting my daughters already poor health at risk. We left and thought to ourselves, "We will always care for Charlie OUR way". We're not anti doctor, we just think that because SMA type 1 isn't very common, and children usually pass away in the first few months, that often, the doctors are learning right along with us. I do want to say though, that other than a few snags, the health care system has been very helpful and supportive of my family, and we feel very fortunate to live here in BC.

Almost every sunny day I take Charlie for a walk, especially this past couple of weeks because I've been feeling low. I was telling Matt last night that I feel like Forrest Gump lately...I can't stop walking, or biking or running (run Cherie run!). Matt has been the same. Sitting still sucks. That's when the realization of it all sinks in. That's when it hurts. So, anyway...I like to walk with Charlie and every sunny day I take her to Cooper's Park in Yaletown and I lay out a blanket for her with Raffi pumping on the ipod. We both just lay there smelling the fresh air, singing and playing with the grass. This past Monday when we were there a woman pulled her stroller up about 10 feet from us and set up her little piece of heaven with a blanket and some toys for her little girl. She made eye contact with me and as much as I wanted to connect back, I was hanging by a thread that day, and knew that even a 'hello' could start the waterworks, so I did my best to avoid making direct, prolonged eye contact back. I finally gave in because I couldn't help but feel comfortable with her (and probably because I was secretly longing to talk to someone) even if we'd never actually met before. I walked Charlie over, trying to be jolly, and introduced the kids. She looked at me concerned and said, "Is she OK?" I began to mumble and try to explain.."SMA...blah, blah, blah, terminal...blah, blah..." She put her hand on her mouth and said, "Oh my god! That is the worst thing I ever heard!" And started crying...I did too. She motioned for me to sit down beside her, and we cried a little more...I would have BAWLED if it wasn't for the fact that I couldn't help but notice the people around us noticing that we had just met and were now crying which made me feel embarrassed and exposed, so I did my best to contain it. We chatted a bit, and it felt good, and then her friend and her baby showed up, so I excused myself and strolled home and told Matt about the lady in the park and my public tears. The next day I went back to the park hoping to see her again...she showed up about 15 minutes later and sat down with me and told me she was hoping to see me again too. So, we're friends now! I'll probably see you tomorrow at the park Caroline!;)

In other good news, a couple of weeks ago I received an email from a woman named Meralon. She had been to the maternity store "Room for 2" on Commercial Drive and the owner of the store had told Meralon and her husband Randal about my blog. They went home and read it and then emailed me saying that Randal was a photographer (Randal Kurt Photography in Kitsilano) and that they would love to take my family's photo' charge! So, we met them today in Queen E Park (they told Matt and I to pick a special place to us) and got our family photo's taken. They are lovely people...they made us feel very comfortable and you could tell they were enjoying their time with Charlie. AND Charlie was in the best mood ever...smiling lots, cooing, giggling, just thoroughly enjoying herself. What an amazing gift they gave us! They have sent us one picture from the shoot (above) and we are going to meet them next week to see the rest. Can't wait!

As I said in a thank-you email to Meralon and Randal today, Matt and I are still in awe of how such ugly circumstances have brought out the most beautiful qualities in people. Thank you new and old friends! We need you and we love you.

Wednesday, July 21, 2010

Happy 13 month birthday Charlie!

(Charlie, almost 13 months)

So, I usually try to focus on the positive when writing Charlie's monthly birthday posts, but since I've been feeling particularly glum as of lately, I've decided to skip the regular post, and have opted instead to write Charlie a birthday letter...

My Sweetest Charlie,

On October 18th 2008 I found out I was pregnant with you. I sobbed uncontrollably when the pregnancy test I took read positive...for two because I was in shock, and two because I couldn't help but worry if I had what it took to take care of you. My life as I knew it flashed before my eyes. I instantly worried if your daddy and I had enough money, enough patience, enough energy, and enough love to give you. I immediately pictured you as a teenager. I worried that I would pass on all of my neurotic behaviors and self esteem issues to you. Would my own personal issues hold you back from whatever it was you were meant to do with your life? Would I be able to give you the freedom to be yourself? Would I forget what it was like to be young and judge you and your choices? Would you grow up to despise me?

As the days went by, and reality set in, I became more and more excited to meet you, and more and more confident in my ability to mother you. I started counselling so that I could fully prepare for you, so that I could work through my own issues, so that I could avoid passing them on to you. You were a clean fresh slate, growing inside of me. A pure untainted human being. And I wanted to do my best to keep you that way.

I knew you were a girl from the moment I found out about you. I remember going for lunch, five weeks along, with your auntie Lori (my doula) and telling her you were a girl and discussing our baby were initially going to be called Maalaea Isabella, because your daddy and I were married in Maui Hawaii and that was the part of the island we were married on, but we changed our minds when Obama became president of the USA because one of his daughters had a similar sounding name, and we wanted something a little more special for you. So, we decided on Charlie-Anne. Charlie was the name of one of the characters in a Nick Hornby book and movie called, 'High Fidelity'. Your daddy and I both love that book/movie (and your daddy loves the actress, Catherine Zeta Jones, who played Charlie). I wrote this quote down from the book when we decided to call you Charlie: "Even her name seemed to me dramatic and different and exotic, because up until then I had lived in a world where girls had girls names, and not very interesting ones at that." That's exactly the kind of name we wanted you to have, we thought! And the Anne part is your daddy's mom's middle name, who passed away when he was 20.

The bigger you grew, the bigger I grew...and the smaller mommy and daddy's apartment became. So, we decided it was time to buy a first/new home for the three of us. We didn't move far, just a few blocks really, but this way, daddy would have an almost sound proof studio to make his music in, and you would have your own room too. We painted it green so that you could decide for yourself whether or not you wanted to be a girly girl or the tomboy daddy was hoping for. Turns out you're both! You're a girly girl because I can't help but melt whenever we're out shopping and I see a pretty little dress or hair accessory I think you'd look 'so cute' in (and you always do!) and a tomboy because you love watching hockey and football and soccer with your daddy. Although, your room is pretty much a storage room now, you were in our room from day one, and you're there to stay!

I had almost finished school when we found out we were pregnant with you. I just had two courses left so I quickly finished them online before you came out to meet us. I had been working the front door at a nightclub three to four nights a week and continued to do so until I was 7 1/2 months pregnant with you. I was super frugal and paid off all of my debt and saved up a big chunk off money to take a little stress off your daddy when I took maternity leave. When we discussed the future we were unsure of whether or not I'd go back to work in my field and put you in daycare or if we'd just make one income work for us and I'd stay home with you. We really didn't know what to expect or the attachments we had in store for us.

I'd often dream of what you'd look like. I imagined a little dark haired blue eyed girl...just like me when I was little. For some reason I was hoping you'd be born with a ton of black hair. I kept a picture that I had ripped out of a magazine, of a little girl I thought you'd look like. I often played my own version of 'Mr Potato Head' and picked apart mine and your daddy's features, putting them together to create the baby that would be 'Charlie-Anne'. And then I met you...

My water had been broken for almost three days when our midwife came over and gave me a 'magic potion' consisting of peanut butter, lemon, and castor oil, hoping to move things along...if it didn't work, I was to be induced the next day because they were concerned about me getting an infection and passing it along to you, if my water remained broken without labor for too long. Anyway, it worked within four hours. I thought I was on my way to the hospital for a morphine shot to relieve the pain and then back home to bed, but you had decided you wanted out, and NOW!

You were born about 6 hours after my first contraction, and that's with the 2 hour break they gave me after the epidural I begged for! After the epidural and the break, the nurses started asking me to push...about an hour and a half later, you came out to meet us. I remember your daddy saying, "Ummm, yup hun, she's got a lot of hair!" And I was so excited saying, "Really?!" And then he said, "but it's not black!" I was confused...there was NO way you could be blond?? And then they passed you to me...a little redhead! OMG I thought! Red?! I was so confused...but what confused me even more was your were so tiny!! I remember saying, "Weigh her." over and over again. I was expecting you to be a 10 pounder...daddy's a big guy, I had gained 47 pounds with the pregnancy, and I was almost ten pounds when I was were 6 pounds 14 ounces. I was baffled. And instantly and madly in love with my teeny tiny redhead.

We took you home the next day. You didn't take to breastfeeding right away...we spent many sleepless nights pumping breast milk and feeding you slowly through a syringe while you sucked on daddy's pinky finger so that you'd get used to 'working' for your food. After two months, a couple of midwives, a lactation consultant and many tears (my own), it worked! You started latching properly and were a pro from then on. Other than the breastfeeding issues, you were the ideal baby...smiling from day one, sleeping well, no colic, no skin problems, no weight gain issues...just a little doll.

Your daddy and I fell in love with you instantly, within a week or so, we were like old pros...born to be your parents. We felt nothing but pure true love for you. I had none of the attachment or post partum issues my anxious mind had worried about while I was pregnant with you. You just felt so right, and so natural. My life had finally really begun, I'd think. You gave me so much meaning and purpose, and a new self confidence in my capabilities. I began to understand so many things, so much better, because of you. Your daddy and I brought you everywhere from day one....Whistler, Lake Tyax, the beach, the PNE...we were so proud of you and wanted to show you off..."isn't she the CUTEST?!" I'd brag. And no one could deny it. You were. And you ARE.

You were ahead of the game in terms of meeting all of your milestones. And then one day, at around 5-ish months, you weren't. You got sick. I guess you were always sick, it just hadn't shown it's face yet. But, I can say, that I always knew you were extra special. I didn't really know how, but I knew. I guess it was mother's intuition. And, as much as I like being right, I can't even express how much I wanted/wished/prayed I was wrong on this one. At 6 months you were diagnosed with SMA type 1. A condition that affects your muscles and is terminal. Your daddy and I were devastated when we found out. But, after moping around the house for a few days after the diagnosis, we couldn't help but notice just how beautiful and happy you were regardless of your new condition, and we thought to ourselves, "Look at her, she's so happy." and we decided to try out absolute best to enjoy our time with you while you're here. We don't want any regrets. We don't want to waste any of the time we have to love you while you're here with us. We have bad days, and some weeks are worse than others, but then we look at you, our beautiful little angel, and we remember what's really important.

You're 13 months today, and you're just as happy and smiley and giggly as ever. And I'm/we're more in love with you everyday Charlie. You were made special for us, and we love ALL that you are. You've changed us. I absolutely LOVE and adore being your mother. You're an amazing, inspiring little girl who's changed a lot of lives and will continue to do so. I love you honey bunny. Forever and ever and ever...

Kisses, hugs, and LOVE!

Tuesday, July 20, 2010


(Charlie, almost 13 months, and mommy)

Just a cute pic for now. I've been super busy training for the Adventure Challenge as well as trying to shake the post 1st birthday blues. Every day that goes by is another day deeper in love that I fall with Charlie, and also another day closer to having to say goodbye to her. I'm just needing a little time to sort out my thoughts and feelings. But when I do, I'll do it here, because this outlet always seems to be the cheapest and best form of therapy for me. Thanks for all your comments and emails. I'll be back soon!

Monday, July 12, 2010

Really, ME?!

(Charlie, 1 year old)

I finally broke the seal...the BIG cry that was looming but refused to spill, finally came. And it keeps coming and coming...and coming, with no end in sight. Just like the guy who drinks 6 beers and then suddenly realizes he hasn't peed all night, pees once, and then can't help but pee every ten minutes for the rest of the night...except my 'pee' has been days long.

I've developed pretty morbid behaviors the past week or so...or are they? I've been particularly drawn to grief websites and looking at open facebook pages of people who've lost children. I just feel the need to know what it really feels like to lose a child. I think I'm trying to prepare myself for the inevitable, but at the same time, I don't know if that's even possible. I've had a lot of mini heart attacks lately...looking at Charlie and then all of a sudden, seeing my future without her. And its horrible. I can't even fathom life without her, which is exactly why I'm trying to force myself to. I keep thinking if I picture it enough and set myself up enough to faux feel the grief, it might make it easier when I actually have to. I don't think it works that way though.

Grief and sadness are very lonely feelings. Matt and I are on different pages at different times, and that makes it really hard to feel connected all the time. I'm sad, he's optimistic, he's sad, I'm optimistic...the timing is almost always off. And when one of us is feeling scared or afraid, and the other happy and excited, we both seem to not want to bother the other with our depressive thoughts, worrying that we'll bring the other one down off of their temporary just doesn't seem fair. I want Matt to be happy, he wants me to be happy, so why burden each other with our doom and gloom thoughts? That's where the loneliness comes in. And the guilt...I feel guilty being bummed when Charlie is almost always so ecstatically it for later, I think. But then that anxious part of my brain chimes in and says, "PROTECT YOURSELF CHERIE...PREPARE!" hence the worry and the doom and gloom thoughts.

I was driving with my friend Anna today and I was trying to explain how awful this feels...I told her it felt like being in love with someone who never ever hurt you, and someone you've never hurt, someone who ONLY enriched your life and changed your life for the better...and like having a warning that the only person you ever really, really, really, loved was going to leave you, and having no control of it. And then I said, "Now take that feeling and times it by 100." That's really the only way I can explain it. Nothing but pure, untainted, real, genuine, love between two people, stolen from you. How will I ever recover from that? Who will I be after Charlie is gone? I seriously can't even picture it in my worst nightmares.

I told Anna that although I've always been somewhat pessimistic, when it came to what life has handed me in general, I've always remained fairly optimistic. I've always thought I had a pretty loving and caring family...I mean, things could always be worse...and I've seen worse, so, I felt fortunate in that regard. And, I know a lot of people who've lost parents, Matt being one of them, and family members, brothers, sisters, cousins...people who have lost friends, etc...but, I remember making a mental note (more than once) that I was pretty lucky, I'd been pretty unscathed by death and disaster. And then this happened. I always remember thinking this stuff just COULDN'T happen to me, I'm not like THOSE people, the ones that this shit happens to, not because they deserve it, but because they are strong enough to handle it. I know, I know, if it worked that way we'd all play dead and/or pretend we were exceptionally weak, so it would skip us...but, I'm serious...I just really feel like, "Is someone seriously kidding me? ME?! Really, ME?! You must not know ME, I cannot handle this!" Like, I really feel like this is the worst thing you can hand somebody. And if you do hand it to somebody, they better be pretty effing tough...and that's the last word anybody (including myself) would use to describe me. I mean, I've lived in Vancouver 11 years and you'll still never catch me on the skytrain after 8 at night alone...I'm that cowardly! I can't even sleep alone in my 5th floor condo without jolting awake, my hand on my phone, ready to dial 911 at the slightest sound.

Yet, this is me, and this is my life. And, I'm still here. And I'm still functioning. Believe it or not.

Tuesday, July 6, 2010

What's the catch?

I've always LOVED getting mail. My dad was a mailman, and ever since I can remember, I would always run up to him when he got home from work around 3 o'clock everyday and excitedly inquire, "Anything for me?!" Exhausted and probably a little irritated, my dad's answer would almost always be, "Nooo Cherie, not today." Looking back it's funny to think that a 7 year old girl was so interested in mail...and I wonder what exactly I was expecting? My university acceptance letter? My REAL moms open adoption records with a letter saying she wanted to meet me and that she was rich and famous? Haha! None of those letters ever showed up, but my dad would usually satiate my hunger for mail with a Publishers Clearing House envelope every now and then, or anything with a 'bulk' mail stamp up in it's right hand corner. And yes, if you're wondering, I would fill it out and send the prepaid stamped envelope (if mailed within Canada) back asap, and then spend the next three weeks dreaming of what I'd do with all of my riches.

I took my grade 11 year of school by correspondence and I swear that the only reason I got all A's and B's and was so gung ho about completing my assignments, was because I couldn't wait to slip the finished assignment into my dad's mail bag and then sit back and try to patiently wait for my marked and graded papers to come back to me. How exciting! Anyway, my whole point here is that SMA has tainted my lifelong love of mail. Today, all before 9am, we had the buzzer ring twice, once with a package we were expecting, and once with a package we were not. Both of which were medical supplies for Charlie. Last week I decided to order 3 months worth of supplies for Charlie so I could see what it looked like, and so that Matt and I could really grasp what to expect, and so we could get used to what we should be ordering for Charlie. 3 months worth of supplies for Charlie looks like 3 large boxes filled with feeding bags, suction tubing, g-tube kits, vinegar, syringes, filters, suppositories, etc. So, that's what we can expect.

Last night we spent over an hour trying to soothe Charlie while she tried to poop. It is such an ordeal for her to do so. Her muscles don't work well so I imagine it's mega turmoil in her tummy, but with no quick exit, no relief for her...all I know is that it just looks like such a painful experience for her. We give her a daily laxative as well as a suppository every 3 days, which I had the pleasure of giving her last night. So crazy the things you find yourself capable of doing after having children. What I once said, "NEVER" to, I'm all, "No biggie" to now. Anyway, It took Charlie about 45 mins after the laxative and 45 rounds of a mash up of Twinkle Twinkle Little Star mixed with the ABC's to calm down. I also may or may not have given her a little nuzzle of the breast for the first time in a month. But, it worked. And she was only needing it for comfort, not food, and I'll admit that it made me feel pretty awesome to know that she still 'needs' me, and she's still my little baby. I plan on saving that trick for special occasions only.

I noticed Matt staring into space a few days ago (again) and I asked him, "Hey, what are you thinking?" He said, "Oh, not much." "Are you thinking about how effing awesome your life is?"I sarcastically replied. "Oh, yeah, just soooo awesome!" He joked back. "I bet you're just sittin' there wondering...What's the catch, this life is too good to be true?!" I joked. And we both just started laughing hysterically. That's what we do. That's how we get by and stay somewhat sane. I remember when we were in Hawaii, I was moving Charlie's legs back and forth and ZZ Tops "She's got legs" popped into my head and I started singing it while making Charlie 'dance'...but when the part, "she knows how to use them" came up, I couldn't help but sing it, "she doesn't know how to use them" and again, we both had to laugh. I think humor is VERY important in situations such as mentally depleting would it be to take things too seriously, and to feel guilty for laughing? That in itself would put me in an institution.

Thursday, July 1, 2010

In between.

(Charlie and mommy, 1st bday party. Photo by Cindy Penner)

I've had a BIG cry stuck in me for the past week. It's began to surface a few times, but for whatever reason, just won't come out. It sucks because whenever this happens, my sadness usually decides to come out another way, and it usually chooses anger. Anger at my husband, anger at my friends, anger at my family. And then not only am I 'blocked up' and feeling the toxic fuzzy haze in my head that my trapped tears bring, but I also feel shame and embarrassment from my angry actions toward my loved ones. So yeah, I need a good cry and I'm about ready to set aside some time and some sappy music to do so, just to get it over with and move on.

Charlie's party was amazing and absolutely perfect, but now, 3 days later, it feels a little anticlimactic. What now? Now what do we look forward to? It's that and the fact that upon reflection I've realized just how fast the past 6 months have actually gone, and once again, I'm afraid of time. I'm developing that anxiety inside of me again that tries to slow it down, tries to grab it by the throat and stop it from passing me by. But, as frustrating as it is, I'm smarter than my anxiety and I realize that time is beyond my control. Matt and I have discussed that we really need to plan little 'vacations' and outings with Charlie that allow us to take a break from thinking about her illness too much...when we have too much time (there is that word again!) on our hands, we tend to go a little nuts.

The day before Charlie was officially diagnosed my friend Christie brought us a plant to Charlie's hospital room. I still have it and I've developed a strange superstition regarding it...for some reason I MUST make sure it's watered and that it doesn't die. I once freaked out on Matt because it had gone too long between waterings and he didn't really understand what the big deal was. I explained to him, whispered to him actually, that this plant sort of mirrored Charlie's life to me. If I can keep it alive and healthy, than I can keep Charlie alive and healthy. It's crazy, I know, but I can't help it. That plant has been with us since the beginning, and was in the room with us when the blinds were drawn and the doctor sat us down to deliver the devastating news. It seems to thrive when Charlie thrives and it also seems to wilt when Charlie is having a rough day and seemingly 'wilting' herself. I also find it extremely difficult to delete photos. I take HUNDREDS a week on our camera and my iPhone, and of course, many are blurry or just generally awful pictures, but whenever I set it up to delete a few, I usually cant seem to hit the button. I'm worried I'll regret it someday when she's no longer with us...even if we have a million other pictures and videos of her. On the other hand, sometimes when I'm taking pictures or making videos of Charlie, I'll question whether it's the healthy thing to do as well...will i just end up torturing myself with them someday?

An uplifting post I know, but I gotta get it out. Nestled in between all of the negative thoughts and feelings are images of the most beautiful baby girl in the word. Little toes, sky blue eyes, triceratops lips, flaming red hair, tiny coos and giggles, grins from ear to ear, snuggles...luckily the in between is so much bigger than the negative.