Friday, December 30, 2011

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

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.
Toy Story (thanks Starlight Foundation!) with bf Dani.
Aunty Fatima brought this back from India for Charlie.

Thursday, December 15, 2011


(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 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 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.
-the luckiest mama ever.