On January 8th 2010, after a few days in the Children's Hospital, Charlie was diagnosed with Spinal Muscular Atrophy Type 1, a terminal illness affecting her muscles that would soon leave her paralyzed and unable to feed on her own...and then pass away, within what we were told at the time, a few months. We were completely devastated.
Up until this diagnosis, besides some declining head control and posture issues, We felt so incredibly lucky to have Charlie, who was (is) the perfect baby. Charlie is very alert and intelligent and so unbelievably happy and smiley...she is ALWAYS smiling.
I can honestly say that I knew from day 1 that Charlie was special...I know, I know, all parents feel that way about their own children...but I swear, I really did know that their was something extraordinary about Charlie, and something inside of me had always believed that she was just too good to be true. I mean she was smiling constantly from day one, she had/has such a gentle cry, she's always been very aware and engaged and she slept well...besides some breastfeeding issues in the beginning, everything was absolutely perfect! She was even actually ADVANCED in her gross motor skills until about 5 months, that's when we began to notice the decline in her head control and lack of muscle development and strength in her legs.
We put off taking Charlie to the doctor for about 6 weeks. We second guessed what we were seeing and, because she is our first/only child we thought it was normal...that and she was just so happy...how could a baby so visibly happy be sick or dying? We still have a hard time computing that one.
On Wednesday, January 6th 2010, our pediatrician came to Charlie's hospital room to explain to us what the neurologists and himself were pretty positive Charlie had, SMA type 1...we would get the full blood test results the following Friday.
I had started to get irritated with some of the doctors the day before and began demanding more tests and explanations...never for ONE second, thinking it would be something so awful. I hadn't slept for three days and was googling non-stop trying to self diagnose Charlie, and was pretty positive it was botulism...but it wasn't.
What a completely surreal experience it is to be told your baby is dying. I just kept saying "No, I can't handle this, not me" over and over. Just in complete shock. Matt wanted to talk about it, figure out medical options and statistics, I just wanted to take Charlie home.
When we got home we just cried and cried and cried, for three days. I actually felt afraid of Charlie...I wouldn't let Matt leave me alone with her. But, all of a sudden, after three days, something just clicked in Matt and I...how do we just mope around our house about our dying daughter when she is just hanging out watching Sesame Street and Baby Einstein, grinning from ear to ear?