I’ve recently had a few conversations with people about Ryan’s current progress and how well she’s doing that have made me try to reevaluate my view on the future. During these conversations people say things like “You see her everyday – do you see how much she’s progressed?” or “You are so lucky to have such amazing girls – do you know how special they are?” The answer to these questions is always yes. I see it. I know it. I love it… but some days are really hard with Ryan so it’s always good to be reminded and these conversations help me remember how lucky we really are.
But often times these conversations lead to the topic of Ryan’s future and what possibilities it holds. I try to not get into those conversations too much. Thinking about that scares me so I rarely let myself go there mentally and try to remain in the moment. If I do let my mind wander in that direction, my first thoughts are usually very dark and go to life expectancy. With her immunity issues and various other unknowns about her condition, we just don’t know how long we’ll have her. Just typing that brings tears to my eyes. But with so many other 11q children passing away recently I know how very real that possibility is. Then I think about the even more real possibility that she may never be independent. And even though there is a far worse case scenario, this is frightening to me as well. As we, her parents, get older I think about what our life together will look like. Will she work? Will her behavior be so out of control that we can’t take her in public? Will she become a grown woman whose diapers I change? The truth is that no parent has a child so that child will remain with them forever. Parents want their children to be independent and successful and have a life better than their own. My child may not get that chance.
But considering how well she’s doing and how far she’s come, why don’t I let myself think how far will she go? In 3 short years she has done so much. She has learned to walk, to eat normal food and feed herself, and she’s trying to talk. She’s already surpassed so many obstacles in her path. But I still just can’t go there. The real truth is that Ryan will never be “normal”. There. I said it. I wrote it. It’s not politically correct and it’s not nice but it’s real. And this blog is about being real.
At this point in a typical child’s development, a parent would be able to take a breather. Not worry so much about their kid getting into everything. Obviously not for us. Things are slowing changing around our house though; things that one could consider a step toward independence for Ryan. We have officially taken down the baby gates. Ryan has the ability to roam the first floor freely although we keep a watchful eye. She is still not allowed to go on the stairs by herself… but she tries! And a lot of the time she goes into the bathroom and moves the stool over so she can practice turning the light on and off!
And of course Ryan, herself, is changing. Her fine and gross motor skills are constantly improving. And her speech is coming along, albeit slowly. We are awaiting insurance to get their act together and give us her speech device but until then, girlfriend is trying her hardest to say new words. Still only able to get out M’s and H’s, her newest words are hi, ham, hair, and green beans (meen means). She loves looking at letters and counting.
The one thing that I’ve really noticed about Ryan’s improved development is that she’s grown so much cognitively. She’s following directions better and understanding abstract ideas. Something seemingly simple to us “typicals” that Ryan has just recently developed is that she now understands when you are pointing at something, to not look at your finger, but follow your point and see beyond it. I’m not sure how she developed it or exactly when, but I can now point to things in the distance and she understands to look further than what’s right in front of her.
I think I need to take Ryan’s lead and learn to see beyond what’s right in front of me. Living in the moment has been a way for me to cope with all the stress of raising a special needs child, but what’s wrong with hoping for a bright future? Look at this kid! How can I not look at all she can do and realize that the possibilities are limitless. I know it’s going to take me some time but Ryan will point the way. And I will follow.