February 23, 2016


I've been wanting to write lately and I've started a few times, but my thoughts all seem to be just fragments. Like the sadness I feel when I hear people talk about their rowdy, full of life teenage boys and their friends crowded in the kitchen. Or the heartbreak of our little friend who has been in the hospital for three weeks straight battling leukemia. There's always the daily grind of life with my buddy and two girls who can tap into teenage angst in the blink of an eye.

Maybe it's just the winter glums. Or the lack of sleep blues.

So I'll cheer myself up with stories of things that make me smile. My buddy loves YouTube Kids. There is a search bar and he usually taps it and asks me to search for his favorite videos. Lately, I've been telling him which letters to push so he can spell it himself. Wouldn't you know the other day, he independently typed in eggs and found the surprise egg videos he loves! Little victories.

We've been trying hard to get all the kids to try different foods. Believe it or not, my buddy is the best at this. The girls complain and gag and let me know that I am the worst mom ever. But my buddy pops whatever it is right in his mouth. He chews (washes it down with milk fast if he doesn't like it) then says, "Mmmm. Yummy." After I praise him and ask if he wants more since it's so yummy, with perfect comic timing he says, "Nope."

Big sister goes through these phases where I see what life will be like when she is a teenager. Even at her most challenging, she is still so kind to her brother and sister. She lets her brother have a turn on her bike and helps push him. She cuddles rara when she feels sad. It can be hard to remember sometimes, but she really is a fantastic kid.

Most of all, I'm grateful for those days when we are all together making memories and laughing.

February 5, 2016

light bulb

This week I brought my buddy to a Down syndrome clinic and we talked with a geneticist. She said something that really stuck with me. (I am paraphrasing and I'm sure not very well) I had an endless stream of questions about different behaviors. The doctor told me that changes in the 21st chromosome present themselves in the brain. This is why individuals with Down syndrome have cognitive delay. She continued on to say that there are a lot of other ways it can affect the brain like OCD, impulsivity, depression, stubbornness and spectrum disorders.

It was like a light bulb went off in my head. I've always understood that my buddy would have cognitive delays. While I encourage him to learn as much as possible, I never felt a pressure to do everything in my power to raise his IQ to genius levels. I accepted that about him from the beginning.

Yet all these years later I am still trying (unsuccessfully) to alter his behavior. I fight against the impulsiveness and try and cajole the stubbornness out of him. I have felt the heavy weight of guilt over failing to get him to 'behave properly' in public. I have been holding my buddy up to a standard that he just can't attain. I need to truly accept this about him and stop seeing his behavior as my lack of success as a mom.

I will never stop encouraging my buddy to be the best he can be. I just need to acknowledge that my preconceived idea of best may not be realistic for him. And there is nothing wrong with that. He is who he is.