Today was a big milestone for Edward…he jumped into the double digits. Having him be a decade old is kind of a shock and has me reflecting on the years that have past so quickly, which is why I had to post this baby picture of him. Along with reflection, I’ve also been thinking a lot about the next ten years, and where Eddie will be then.
Even a year ago, I wasn’t prepared to discuss the big scary future. Eddie’s future gets my heart racing because the path isn’t clear. For my oldest daughter, she’s constantly trying out theories for adulthood. She wants to attend Oxford…maybe Stanford…or now she is considering the Air Force. All of these options are tangible because I know what they mean and have known others that have paved similar paths…well, maybe not to Oxford.
Once she started talking about college a year ago, I frequently would turn and look at Eddie and think, “What about you?” Due to the multiple conditions that affect his daily life I often ponder, “What future will Eddie have? What will he want to do? What will make him happy?” Most importantly, how will I help him find a future he can be excited about…and one that he has chosen for himself.
While at the AFB Leadership Conference in Phoenix last week, I presented with another parent who also has a child (now an adult) who is blind with multiple impairments. She emphasized the importance of making sure our children decide where they spend their time as adults. Whether they are seeking employment, or in a day program, they should make those decisions. Of all that I learned at the event, that point has stuck with me, because I don’t know how to get that information from him, but I know we need to figure it out.
So, as he turns 10, and I think more about him in his twenties, it’s time to start planning for what he needs to be happy down the road. To make sure he’s happy, our biggest priority is finding better ways for him to communicate. Not having to ask, “Do you want X, Y, or Z?” but instead being able to ask “What do you want?” and getting a definitive answer. Then, he can share his dreams with me, too…just like his big sister.
As you can tell by my ramblings, birthdays aren’t all about celebration for this special needs parent. They also bring a coating of fear, as his childhood keeps moving by, and the answers are still unclear. I realize fearing the future isn’t unique to parents of special needs kids…but what we fear does make us part of a smaller club. A club that also teaches us to face our fears…and to make sure the celebration is always the most important part. On that note…
Happy Big 1-0 Eddie!!!