This last year has been a crazy year for everyone. To recap the year for my little family would take dozens of posts. For now just taking a step back and evaluating where we are now is a task in itself.
This week alone we had 5 appointments all surrounding William. He had occupational therapy, vision services, physical therapy, neurology, pediatrician, and marriage counseling for mom and dad that's just this week! Having a disabled child keeps you busy and on your toes.
Here's what we know: William has a genetic mutation in the NDP gene that has resulted in a Norrie Disease diagnoses. This disease has caused my son William to be completely blind. While he used to react to light, upon last exam it was confirmed he is no longer light sensitive. Norrie disease always comes with severe visual impairment but can come with so much more. His hearing is great, and he LOVES all things music! Because there are so many symptoms that may or may not come with Norrie he will forever regularly see; neurologist, ophthalmologist, audiologist, endocrinologist, physical therapist, occupational therapist, phycologist, and don't forget the pediatrician.
I try to focus on the day to day while still managing 100's of medical bills, 2 insurance companies, multiple doctor appointments, PT exercises, on top of all the regular day to day tasks and working part time. Will is currently 7 months old, in some ways it feels like only yesterday he was born, in others it feels like it's been an eternity. Some days are harder than others. Some days I can't help but uncontrollably cry, others are filled with nothing but smiles and laughter.
No matter what the day brings there are a few things that are certain
William is by far the happiest baby I've ever known
I love him more than I knew was possible
I will ensure he gets every opportunity possible in life
There will be things he cannot do and I will be there for him
He will feel the beautiful world around him in ways I only dream of
He will get bumps and bruises and learn from them
I'm not perfect and mistakes will be made
I will be unrelenting in giving him the best of everything
William was meant to be my son and I was meant to be his mother
There is no guide book to parenting especially when life throws you a curve ball. Every mother does their best. I will do my best to share what I know in hopes it can help someone else.
-Eve
