Wednesday, June 26, 2013

Opening doors

When we found out about Johnny's extra chromosome, we couldn't help but automatically go to the negative. Being faced with Down syndrome was like looking at miles and miles of a hallway with doors that all slammed closed at the same time. Those doors signified all the things we didn't think he would be able to do. It was hard to get that image out of my head, doors of opportunity slammed shut in our faces. As we worked through the processing of the diagnosis, we even wondered what it would be like to knock on some of those doors, would we get an answer or would we be ignored? Would the doors open enough for us to peek in through the crack only to be ushered away as soon as they saw who we were? All we wanted (and still all we want) for our son was a chance, but would it be possible?

It's better now. Some doors have opened on their own. Some of them are simple doors, milestone doors, some of them easy to open, others a bit heavier. Doors like rolling over, sitting up, babbling, taking in solids, scooting in a circle, all these doors are now swung wide open in "Johnny's Hallway". We have had to help him open some of these doors, but others, like scooting around, he pretty much knew how to do instinctively as soon as he rolled over onto his tummy. We see other doors creaking open as well. The crawling door, imitating sounds door, and pulling up with support door have at least unlocked and are making their way to being accessible to him.

Now I wonder how many of those doors will be available for us to open over the years? How many of those doors will we have to fight to open? How many of those doors will need assistance in opening? How many of those doors will swing wide open without any resistance at all? How many doors will Johnny need us to help push and how many will he be successful in opening on his own? There are sadder thoughts that linger, wondering about how many times we should let him knock on a door that probably won't open for him, before we show him another door that is better suited for him? How many times will we have to comfort him when a door is shut in his face?

I have realized over the past week that I need to be pushing more doors open for my son. I had been having inklings and urges that he could be pushed a bit further in his therapy and I feel I have validation in asking for more. I had forgotten a rule learned from teaching that sometimes you have to ask for services to be given to you. I want a few doors to fly open over the next few months and some of those doors are going to take a lot of work, but I don't want to see a hallway full of shut doors in front of us anymore. Johnny may not be able to open every door he faces in life, but we are going to make sure he opens every one that he can or every one that he wants.

Ultimately, it is good that we have realized that his life will be more than a little boy sitting alone in a hallway with no chance of moving out. I don't know which door will be this week, or next week, or next month, or a year from now, but I do know that there are plenty to try. As dismal and lonely as this hallway felt a year ago, it feels like a pretty good place to be right now. I am sure the sting of rejection will hurt us at some point, but the welcome mats will surely outweigh those. In the mean time we will focus on the doors I know can be opened soon.

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