It's The Most Wonderful Time of the Year

That's what the song says right? Well, that may apply somewhere, but not to our house. Not since Rex entered this whole new world. November to February are the worst months for us. We get a good run from mid March to about Halloween and then you can see the stitching slowly start to unravel. It's usually something small, like forgetting basic things that I know he knows how to do, like pour milk in a cup or add 2 and 2 or spell his own last name. As the months progress, the self injurious behaviors increase and the ability to process incoming information and stimuli, fades. Little noises are suddenly very loud. Familiar places suddenly feel foreign. It was during this stretch of time last year that we took Rex to the ER for suicidal thoughts. It was in this four month time span that we were on the phone with his psychiatrist every day. 

This year seems to be a little better. He is a year older and it is easier to explain to him why we are not doing certain things this year.

 "Why aren't we going to the Christmas party this year mommy?"

"Do you remember how loud it was last year and what happened when we left?"

"Oh yeah. I screamed and cried in the truck the whole way home and then when we got home I think I hit you or hurt you. Right?"

"Right. So that's why we aren't going."

" But mommy, I think I can do it this year. I thin it will be ok. I can hold it all inside."

" I know you could do it and I know you could keep in inside, but what happens when we get home? Where does all that go?"

"It goes out everywhere and explodes and bad choices happen."

"That's why mommy doesn't want to push it. I know you can do it, but the little bit of fun isn't worth the outcome at home."

"Ok mommy. I understand. We can stay home."

Conversations like this are easier now. He can remember the last time and he doesn't want to repeat that again. I no longer fight back the tears while I'm trying to explain. I am coming to terms with this life. So my husband took the younger boys to the party and Rex and I stayed home. 

But at the same time, he may remember things like that, but he's forgetting things again. He asked me the other day what our family does to celebrate Christmas. I KNOW he knows this because he had just been talking to me about it. But in that moment, he honestly couldn't remember. 

I think back to his first Christmas. To this little boy: 

I remember that day so well. He was almost nine months old. I loved those little socks he was wearing and the photographer took so many adorable pictures of him. It was hard to choose which ones to buy. He smiled for the camera and laughed and giggled and then smiled some more. 

This is the picture I keep on my nightstand. This is the one I look at before I close my eyes at night. This is what I see after we have weathered yet another storm. This is the face I remember. The face full of promise and hope. The face with his whole future ahead of him. The perfect cheeks of a perfect baby boy. This is my reminder that the Rex of today is still the Rex in that picture from so many years ago. And maybe through his eyes, Rex can show me how to love this time of year as much as he does. Merry Christmas everyone!

-R.D.