As much as people like to stand out, they only go far enough where they are still in reach of other people. They want to be unique, bot not so much so that no one identifies with them.
When Jess was in elementary school, she made friends with a younger boy. Jess was known as the girl that couldn’t walk well or talk and Jake* was the boy that walked like a sailor. His mom was concerned that he wouldn’t fit in because he wasn’t like any other child that she had known. Jake had a form of SMA (spinal muscle atrophy,( If you did an ice bucket challenge, this is under that same umbrella. In fact, did you know the 2nd leading cause of death for children under the age of 2 is SMA?). In Jake’s younger years, he was able to walk, play baseball, attend Karate and swim. In all ways, he was a typical young boy except for this one thing that made him unique. Often times, his mom would share her fears. She wanted him to fit in and not be different. She wanted to protect him from the hurtful things that people say when you have a disability. The best advice I could give her at the time was “take his lead. If he is not concerned, then you shouldn’t be either”. As much as she wanted to protect him from other people, it was unwarranted because he was well equipped to protect himself.
Jake was a very bright, articulate boy who happened to have a debilitating physical disability. At first glance, people would see how he navigated the world, but when he started talking, it was obvious he was special, but not in the ways they had assumed. Not only was he smart, he had a heart a mom could be proud of, as well as a great sense of humor.
Jake recognized that Jess was different, but he didn’t care. This is a beautiful thing when kids just accept other kids. Isn’t this what we all pray for? We don’t want to be recognized by our differences. We want to be seen as people first. At the age of five, Jake asked his Mom “what is going to happen to Jess? Where is she going to live?”. Mom replied “I don’t know honey”. Jake said in a matter of fact way, “well, she can live with me, she can reach the tall things and I can answer the phone”.
Why is it that a child so young can cut through the social crap and envision a better world? There is not one person you will meet that has not had a challenge. The only difference between them and us is we can’t hide. We put it all out there. As difficult as this is, I much prefer this open concept where people are honest. There does not need to be a wall that divides us.
When Jess had her first taste of independence and left for a month trial to live in in New York State, we knew this was a long shot. It was during this time, we lost contact with this family. In truth, what really happened was my feelings were so hurt, I ended the friendship. All of these years, I had watched Jake’s body fail him, but also witnessed all of his victories. He had been class president. He had been part of a sports team. He had many friends and even had a girlfriend. When I shared my excitement about Jess’s opportunity to live and work on a farm where she could be part of a community, my friend could not find happiness for us. This one time where something wonderful appeared to be happening for my daughter, my friend seemed to only focus on how her child would not have this independence. I had been happy for her son for all of his success and she could not muster up the same enthusiasm for mine. I felt betrayed.
The last straw was when we had made plans to visit. She had picked the time. As the date approached, she came up with every excuse why she could not meet me. In my heart I knew this was bullshit. I still regret losing my friend. I regret that I did not tell her why I was so upset. She does not know that Jess failed miserably and the door towards independence had been closed. She does not know how difficult these last few years have been. Hindsight being 20/20, I do realize how painful this must have been for her. but dammit, why could she just not put that brave face on and be happy for us?
Most all of our friends have typical children. They went on play dates, overnights, traveled and now are off to college. I am truly happy for them and the lives that they have made, but there is that twinge of sadness that will forever separate us.
I’m writing this post to apologize to my friend. Though I saw her pain, I just let my emotions get the best of me. Now a few years have gone by, I want her to know that I’ve never stopped praying for her family. I imagine that Jake went to college. I know that he is so much more than his disability. As parents, we all make mistakes. I hate it when I have to admit mine.
* name has been changed
** there is always something more that I want to add that does not fit into my post. I’m beginning to see how the world of acceptance towards those that are “unique” is beginning to grow. However, the world still needs a big wake-up call. You may be able to see our challenges, but we know you have them too. Ironic that this issue exists in our so called world of “political correctness”.
No one wants to be treated like this: