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.

A place of your own

So much has happened in our home over the past four months. We have been living in a construction nightmare full of noise and drywall dust and paint fumes. We have had to cancel our ABA therapy or move it to other locations.

On top of all this, we were dealt some harsh news that my father is battling cancer for the fifth time. We all fear that this may be the last trip around the sun for him. This has been especially hard for Rex. He associates himself with Grampa so much. I think if Rex understood the concept, he would say that Grampa is his hero. 

All this to say that our life has been chaos for months. Luckily, last week,the construction teams finally finished up and we have our house back again. During all of this time, I have been making sure that everyone else is taken care of, and when this happens I tend to neglect myself. I've read so many other blogs and articles that talk about taking time for yourself. Get away for a cup of coffee, read a book, take a five minute meditation break, wake up before everyone else and go for a run. These are all great ideas, but for lots of reasons, they just don't work in our home. But there is something that does work for us. 

Our bedroom. The room I share with my husband. When our youngest first got sick, I made it a priority to keep that room clean and decluttered and peaceful. Well all that had been lost. We no longer had that sanctuary that we could escape to at the end of a crazy day. Our room was full of piles of things taken from other rooms of the house during construction. So last weekend, my husband and I got our sanctuary back. It's nothing fancy. No great window looking out to the mountains or a balcony overlooking a lake. No big sitting area with oversized chairs. It's not a magazine photo shoot, and we don't want that. We want a room that speaks to us. A place we can escape to after the boys go to bed. A place that feels safe when the rest of the world and sometimes even the rest of the house doesn't. We have what we need. See look? 

Nothing fancy, but it is ours, kitty cat included. It's where my husband and I snuggle and watch movies. Usually he watches and I sleep. It's where I read at night if I can keep my eyes open. It helps me find peace. 

So this is my challenge to you. Take back your bedroom. Take it back from your kids. Take it back from your laundry. Take it back from the clutter. Make it yours. Make it a room that makes you smile when you walk in and makes you feel happy. Whether you have special needs kids, or typical kids, or no kids, or dog kids or cat kids. Sometimes it's just impossible to escape your house. Sometimes life is full of chaos, so we all deserve one room that isn't.  So what are you waitng for? Go!

- R.D.