Diagnosis- The list

At an appointment a few months ago I was given a 2 page summary of how the medical world sees Makayla. It was interesting to me because as time goes on you become numb to the labels that are placed on your special needs child. For us the journey has been filled with nothing more then the best guesses of some of the greatest pediatric medical minds within reach. However, when I see the list of what her doctors consider her medical diagnosis it makes me realize how long the road has been in such a short time. Written words are not as easy to bounce off the depths of a parents soul as spoken words for some strange reason. I prefer to bounce things off, it is how I cope. For reason it makes hope seem so much more bright and alive. Hope always remains alive within me but there are days the light is dimmer.

I don't really know why I blog, I guess part of me hopes that when others read it, something will resonate within them. Whether it is the feeling that they are not alone. Or whether it can help to instill empathy and compassion in a world all to void of such things. Or perhaps Makaylas journey itself can inspire those without disability to count their blessings, and be motivated by her unending strength. Perhaps when heartache and triumph are written they will be less easy to ignore.

Makaylas first diagnoses was when she was 8 months old,  Cerebral palsy, spastic quadriplegia.  Now there is a mouth full for a new mother. Her second diagnosis was Global developmental delay with language regression at about age 2. Localization related epilepsy shortly there after. Soon after came Failure to thrive. Next was Esophageal spasms at 3 and half years of age. Late spring we added G-tube insertion from silent aspiration, and most recently clinical Angelman syndrome.

So many times I have thought, well who cares what their best guesses are, who cares what labels they give her, she is still Makayla, a hilarious trooper!! I stand by the fact that it doesn't matter what it's called but what helps is knowing that maybe there is power in numbers. The Angelman community I have recently joined is fierce and supportive. I am grateful at this moment for one more label because for the first time I realize their are so many other quirky complex kids and we are not alone. It may not matter what the labels are but what I can finally admit is that having a support system does, and I am grateful and for today hope is bright!