Lizze was talking about one of Gavin’s many heartbreaking diagnoses and how she’s been researching Childhood Disintegrative Disorder. She wasn’t necessarily wrong in her understanding of what little is known about this absolutely devastating and rare form of Autism, but it rubbed me the wrong way.
Childhood Disintegrative Disorder is very, very rare and absolutely devastating. I’ve heard it referred to as the absolute worst diagnosis a psychiatrist can make. Basically, the child will develop typically until about the age of four years. Seemingly overnight, the child will begin to regress and lose much of what they have learned. There’s zero treatment and no cure. The prognosis is always bad. The rest is a bit blurry because there’s almost no research being done because it’s so uncommon..
That’s the gist of it.
Before I continue, it’s important to provide you with as much backstory on CDD as possible. Please click here to read everything I’ve written on the subject thus far.
For some reason, I became very angry with her approach to it and her outlook for the future. I can’t explain why I reacted like this, at least I couldn’t in the moment.
Lizze was guilty of nothing more than being a loving Mother, who’s maintaining hope that the condition has reached a point known as a plateau. This is essentially when the condition stops progressing and he will stop regressing.
What kind of monster am I to become angry with the Mother of my kids for holding onto hope? What the fuck was wrong with me?
It took some soul searching but I soon realized the problem wasn’t Lizze or her hopeful outlook for Gavin’s future. It was me.
I was sitting in the parent pickup line a few days later, waiting to pick up the boys from school when it hit me. I broke down and cried. It was one of those soul cleansing moments and it became clear what had happened. I’ve lost hope.
I’ve lost hope that everything with Gavin will be okay.
Over the last fifteen years, I’ve been to every single doctors appointment, every single specialist and asked countless questions. I’ve researched and written countless words on this subject. I’ve even connected online, with other families who are living through the same thing.
The outcome is always the same and it’s anything but positive.
I’ve lost hope because maintaining it is so incredibly painful for me. So many times along the way, I’ve been carrying the torch and so many times I’ve had my heart ripped out. I can’t bare the thought of losing Gavin and to me, the only thing worse is pretending the situation is anything other than it is.
I don’t know if that makes me sound like a terrible person or if it even makes sense?
Everytime I have hope and inevitably find my world shattered anyway, it’s like a piece of breaks. There’s a song by OAR called Shattered. I’ve embedd the video below.
In the song, Marc Roberge asks how many times can I break till I’m shattered. That’s exactly how I feel. How many times can my heart break before I can’t put it back together?