Thursday, March 3, 2011

Growing Pains

One of the hardest parts of having a child with an intellectual disability is the unknown of his or her adulthood. Seeing other kids with Down syndrome that are teens or older can be difficult. I know I am not alone in feeling this way. I have had many moms tell me about how hard they cried at the first Buddy Walk when they saw the older kids (and yes, I did have my moment, too). I have also had moms of teens or grown kids encourage me with empathy because they also felt that way in the beginning.

Why is it hard for those of us parenting little ones? Maybe it's because we still think we are the ones that are going to break the mold. That our kids will be the first to not really have the characteristics that go along with Down syndrome. That no one will be able to tell. Now, don't get me wrong. It isn't that I don't have high hopes & expectations for Levi. I just try to keep those things in check with the fact that he does indeed have Down syndrome and there are some conditions that come along with it. You can already see how hard we are working to get him to reach his full potential, and I do think it will make a difference. I also think that this generation has more support and inclusion than ever before, and their options are limitless, but we cannot completely remove the condition, and I am okay with that.

All of this is to say that I am getting to where I don't really have to analyze or even care so much about all of that. I just want to love this kid and enjoy him. I want to stop thinking and just live. I have had three experiences in the last month that have helped me let go.

1. This video a friend called me about. She told me about it just before I went to the hospital to visit baby Miles, who was in critical care after being life-flighted to the children's hospital. He was on a ventilator and had a feeding tube. He was struggling through pneumonia and serious breathing problems. (He is A-OK tough cookie!!)
Click here to see it and the news story.

I watched this with my dear friend and her husband. Did I mention that Miles also has an extra 21st chromosome? (the only reason I am mentioning it is b/c it is pertinent to this story!) We cheered and laughed and felt satisfied that our boys are going to be okay and rock out whatever interest they choose. We also loved how well the young man in the video spoke.

2. After a meeting with our local DS parent group, there was a Valentine party scheduled for another age group. One of the teen boys was dropped off by his dad, and I shook this boy's hand and introduced myself. I thought he would hug and love all over me (like the stereotypical boy with DS), and he very gracefully and eloquently introduced himself, shook my hand...and turned away from me like he didn't care one bit about me!!! I loved it!! Why would he love all over me just because he has DS? He didn't know me and acted like any other teenager would in that situation. Loved it!

3. Today while walking into the grocery store, I saw a family with a grown boy that has DS. I have never seen them before, but the mom looked so friendly, I introduced myself and told her that my baby has DS. Her boy WAS overly affectionate. I asked him his name, and the parents told me he doesn't talk. She said, "He's very intelligent. He just doesn't speak...Well, unless he gets really mad." We smiled at each other and went our separate ways.

Now, six months ago that would have hurt my heart, and I am certain I'd have cried all the way home wondering, "Will Levi be verbal? Will be be socially inappropriate? How will others feel around him? Will our friends still want to be our friends?" and on and on and on. Today I just thought. So what? He was kindhearted. He was adorable. His parents were happy. He made my day. What a joy to bump into them. Will Levi be like that? I don't know. I don't think so, but even if he what? I thought about the beautiful weather, the sun in the sky, the great song on the radio. It didn't affect me.

I love that it didn't affect me.


Jenny said...

This was great! In the beginning everytime my mind went even a few years ahead I would burst into tears. I remember wanting Russell to not look like he had Ds or sound like he had Ds. I would always tear up when seeing an adult with it, it would almost feel like recieving the diagnoses all over again. It was scary and very painful. But its funny how much fear melts away as time goes by and we simply just love our children.
This was a fantastic post!

Leah said...


michelle said...

beautiful. thanks for sharing

Fluffy PuMa said...

I'm praying for all of you! (just to let you know) I know that no matter what, you will triumph over anything and everything!

Wool Winder said...

I loved that video!