Why my heart breaks for my oldest #SpecialNeeds son

With all Gavin has going on in his young life, he’s blissfully ignorant to what it all means. In a way, that’s a blessing. He’s always so positive and looking forward to growing up. He’s seventeen years old and he’s looking forward to growing up. 

Gavin doesn’t understand that there’s a better than good chance, he will never be able to live on his own. He doesn’t understand that he will never drive a car. As heartbreaking as it is for me to even say this, he will never get married or have kids of his own. 🙁 

When Gavin says he can’t wait until he’s grown up, I don’t know what to even say, except don’t be in such a hurry to grow up.. 

Today he told me one of the things he wants to do when he grows up and can make decisions for himself. He wants to have his own computer, so he can play PC games on it. More specifically, he wants to play all the Age of Empires games and needs a PC to do that. 

I was relieved to hear this because that has nothing to do with him growing up and making decisions for himself. That can happen anytime we have the funds to buy him a computer. That’s entirely realistic and a beyond reasonable wish. I can handle that. 
What breaks my heart is when he talks about what he’s going to do when he has kids of his own. 

I never want to limit my kid’s ambitions or quash their dreams, but Gavin will never have kids of his own. He will never get married and start a family. It’s just not in the cards for him and I may sound like a terrible father for even saying that, but it’s the truly ugly reality that we are living in. 

The heartbreaking truth that I never talk about, is my wife and I will likely outlive him. His chronic health conditions are such that he will very likely continue to decline over time. Childhood Disintegrative Disorder is a truly horrible and degenerative condition that does nothing but take. 

There’s been a relatively constant cognitive decline, since he was younger. It doesn’t seem to necessarily apply across the board, but it impacts most parts of his life. 

I haven’t talked about this stuff in a long time. I didn’t intend on unloading all that here, but I did. 

Most of the time, I carry this around inside of me and it’s eats me alive, a little at a time. There’s always so much going on around me. I’m often distracted by the next fire I need to put out, and I just don’t think about any of this. 

Unfortunately, we are going to be facing part of this reality very soon because Gavin turns eighteen in January, and we need to be granted permanent guardianship over him. That involves going to court and possibly having to explain to him why we have to do this. I don’t even have the words to explain what that feels like. 

Anyway, I’m going to quit while I’m a head. The more I talk about this, the sicker I feel in my stomach and the more I just want to breakdown and cry.. 

7 Comments

  1. kimmy gebhardt

    I can’t even imagine what it’s like for a parent to know that that will likely outlive their child. You and Lizze have my sympathy for that. It is a terrible reality and no parent should ever have to lose a child. My other thought while reading this is that maybe you could make the PC and Age of Empires his Make-a-Wish wish. Does he have a favorite celebrity? I’m betting Make-a-Wish could make this all happen for him. And I don’t know the particulars, but doesn’t it have to happen before he turns 18? No time like the present to get Gavin his wish. ūüôā

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