Thursday, December 15, 2011

Reflection.

(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.

6 comments:

  1. thinking of you

    Love and Light

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  2. Hi Cherie, Thank you for your recent posts. I was just reading your last one the other day and replied, but then it disappeared so I'm back on here today. I can't get enough of your posts and your insight because all I keep thinking is I KNOW.. I KNOW exactly what you mean! It is surprising how similar our journeys have been with our daughters, what the doctors have said to you, what you have gone through, the rollercoaster ride. Sometimes it feels like I am the only one who understands this path and then I read your posts and I don't feel alone, someone else gets it and is living it too. My heart always goes out to you and Charlie, I know there is always that struggle of feeling like everything is so unfair and it can hit us off guard, the self pity, the guilt and yet also that feeling of being extremely blessed at the same time having this child that is perfect on a whole other level that no one else could possibly understand. You are doing an amazing job at being Charlie's advocate and she is doing well because of you and Matt's love for her. Keep on doing your thing mama and keep staying strong!

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  3. I saw your blog today for the first time and it really touched me. Your story is compelling and I was sad that I didn't have time to keep on reading back to the beginning... but I plan too.

    Your love for your child is so strong and clear and inspirational. I know that is probably not what you feel a lot of the time and certainly isn't your goal, but it is the result.

    Your story is amazing, tragic, compelling and beautiful. Your writing is riveting, strong and makes me want to read more.

    I will follow your blog - I am so happy for your little girl that she was given to parents who would appreciate all she has to offer - as you said her perfection on another level.

    Bless you all!

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  4. You are a strong woman and mother. Keep fighting for Charlie. You are doing all the right things. I just read your blog and find it hard to believe what you have been through. As a mother of two young children, I can only imagine how you find the strength...I found your story a true inspiration. Merry Christmas Charlie!

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  5. Hi Cherie,

    I stumbled across your blog the other day when Canuck Place shared it on facebook. Your blog is amazing and I can relate to Charlie-Anne in so many ways! I, myself, was also diagnosed with SMA type 1 when I was 9 months old and the doctors told my parents that I wouldn't live past the age of 3. My doctor once told me that I was the strongest type 1 and the weakest type 2! I am 19 years old today and I am studying at UBC. Although, I have many physical limitations (I also use Bipap at night), I don't see myself as an individual with SMA and I try not to let it stop me! Your blog is so inspiring and I enjoy reading because it makes me reflect about my life as well.

    If you have any questions or would like to talk to me, please don't hesitate to email me at: sarahpcheung@gmail.com. I would love to get in touch with you!

    Merry Christmas to you and your family and give Charlie-Anne a huge hug for me! She is a fighter! =)

    Sarah

    p.s. I am the girl that was in the newspaper two years ago when the Paralympics were here and I was carrying the torch. .

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  6. beautiful picture. have the most blessed and merry of Christmases!

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