I haven't written a truly heartfelt piece in a very long time. Writing has been such an intrical part of my life for so long now but I feel like I've lost my voice. Writing has lost its meaning and I've lost my passion for it.
I'm working to rebuild that part of my life and it's not easy. There are roadblocks I've yet to overcome and others that cause me to veer off course, at least temporarily.
That being said, and reasons I can't explain, I feel compelled to talk about *hope. *I'm not writing about it in a way that's meant to be inspiring to others, at least I don't think it is.
I'm writing about how I've lost hope.
I'm writing about something very personal and painful for me. Maybe you can relate and maybe you can't. My goal is to simply open myself up in a way I haven't for a very long time.
A few weeks back, Lizze and I were talking with Dr. Pattie during one of our routine Tuesday evening family therapy sessions. It was a typical session and we didn't really have an agenda for that night.
For some reason, and I don't remember why, we began talking about Gavin.
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 <strong><a href="https://www.theautismdad.com/?s=Childhood+Disintegrative+Disorder&amp;submit=Search" class="text-zinc-900 font-semibold underline underline-offset-2 hover:text-zinc-600 transition-colors">here</a></strong> **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?
I know what the reality is when it comes to Gavin's future and it absolutely crushes me. I would trade places with him in a heartbeat and carry his burden as my own. I've prayed for that so many times for this to happen, but it's like noone is listening. Why do I deserve to be healthy and Gavin suffer?
Lizze and I have both done everything possible to unearth anyone or anything that may be able to help Gavin. Every single test has been done and expert consulted. All we've ever really received along the way was more information that broke our hearts.
I know that it's not possible for things to get better. I know that the outcome is a forgone conclusion. What we don't know for certain is a time frame. Every day I wake up with the knowledge that I will most likely outlive my son and that absolutely kills me.
Hope is an amazing thing and I absolutely admire those who have it, including my wife. Hope requires a strength that I'm simply no longer in possession of. I hate that about myself and I wish hope was something I could maintain but I no longer know how.
I'm in a place where having hope has hurt me so many times that I've hardened myself in order to keep from breaking. I tell myself that I'm better off being prepared for the inevitable outcome, whenever it arrives and having hope will only serve to make that outcome more painful.
Maybe I'm right and maybe I'm wrong.
What I do know for sure is a father should never lose hope, especially when it comes to his children. What does that say about me?
