Monday, March 22, 2010

Happy 9 month birthday Charlie-Anne!

(Charlie and mommy, 8 1/2 months. Photo by Cindy Penner)


















Well, we're back. We had a fantastic time in paradise and now it's back to reality for the Cox's. Matt is already insanely busy with work, and I'm playing secretary again; making countless phone calls and trying to perfectly align Charlie's crazy schedule. I came home to a stack of mail from Canuck Place, the Children's Hospital, the BC Center for Ability, Genetics testing, the Red Cross...the holiday is officially over.


We had planned our trip around Charlie's g-tube surgery which was supposed to take place on March 25th...but, it looks as though there was some miscommunication with our pediatrician AGAIN, and it was cancelled and rescheduled for April 9th. We are a little frustrated with the change in plans because we had mentally prepared for the surgery and now the grey cloud is left to loom over our heads for another two weeks. Also, through research and the advice of others, we've learned that it is best to get the g-tube surgery ASAP to avoid complications; it should be done while Charlie is healthy because she will be put under with anesthetic and it can weaken her already compromised respiratory system. But, at least it's only two weeks away, and to be honest, I am going to use this g-tube free time to inhale what little normalcy we have left.


It's Charlie's 9 month birthday today. The older she gets and the healthier she stays the more hopeful we get. Yes, we've definitely seen a decline in Charlie, but, if we focus on her abilities, she's doing remarkably well considering her diagnosis of SMA type 1. The fact that she is still breastfeeding is almost a miracle...many babies that suffer/have suffered from SMA type 1 have lost/lose the ability to suck long before 9 months of age. That, and she still has partial movement from her elbows to her hands and can still lightly grasp objects such as feathers or straws. We are starting to look more at what Charlie CAN do instead of what she CAN'T do...looking at it that way helps us cope better, it's the silver lining.


It's funny to think that before Charlie's diagnosis, when we knew something was wrong but didn't know what, we went through all of the medical issues it could be (NEVER thinking it could be this serious) and thought about how we'd live with it...thinking of ourselves almost more than Charlie. We honestly thought that she'd have an undiagnosed case of hypotonia (floppy baby syndrome) and that she wouldn't walk until around 5 years old... looking back, we actually felt ripped off when we pictured a future of physiotherapists and leg braces...but now, that seems like a dream come true to us. The places one's mind visits when they are (initially) faced with challenges and adversity can be dark and selfish. We have since dropped almost all of our needs and are focused more on taking care of Charlie and her needs. I mean, we still pray for a miracle, but the definition of 'miracle' has changed for us. We no longer want/need her to walk, ride a bike, etc. we just want her to live a happy life, preferably long, to be pain free, and to keep smiling. We aren't perfect and still have our selfish days, but we really try to not let them overshadow how proud of her we really are. Charlie is an angel on earth who has taught me what it means to really love unconditionally and whole heartedly. In many ways, to quote my friend Cindy, we've "won the baby lottery."




2 comments:

  1. you sure did win the baby lottery.. she is an angel.. her smile is soo full of purpose and she AND her mother are teaching us all so much.. i am reminded to try to live in the moment because that is all we can really count on.. the future is not a predictable place for anyone. your words are very amazing, insightful, full of bravery and i look forward to reading your posts. i wish there was more we could do.. i am sure we all feel this way

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  2. Ditto, Cindy. I don't have the way with words you have, but my sentiments exactly.

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