Most days, I don’t think about the differences in our family life compared to others. It’s just the way that it has been for the last 4 years, so I wouldn’t know any differently.
But then, I have days like today, when I am looking on Amazon at medical bracelets to customize for Sam. A bracelet to let everyone know, that he is Autistic and has Fragile X. So he may not respond or act how you would expect when you ask him something. It’s a fear you know? That if anything EVER happened to my son, and he was separated from us or his group because he doesn’t pay attention and doesn’t follow or understand commands, that he could wonder off and easily be lost. And he wouldn’t be able to tell someone he needs help. Since Sam is nonverbal, how else is someone that finds him supposed to understand why my son is not answering their questions; What’s his name? Is he lost? Where is mommy or daddy? It’s terrifying. And it’s a fear that I really never thought that I would have to concern myself with. I even have to worry about the possibility that a stranger could grab his hand and guide him away, and he wouldn’t put up a fuss because we have had to work with him on following adults that he doesn’t know for therapy. He doesn’t pay attention. He lets a hand grab him, as he stays in his own Samuel World, taking in his surroundings, and trying to keep himself calm in overwhelming environments. Those are the moments that it gets to me. And I want to break down and cry.
Don’t get me wrong, I would never, ever change anything about my son. That is not why I am crying. I’m crying, because those moments are the little reminders that Samuel is going to struggle. That every thing we take for granted, like saying your name, takes a little more thought and effort for him to be able to do. They remind me he may feel different or isolated. I don’t want my perfect little boy to feel like there is something wrong with him, like something separates him from the rest of humanity. And it just makes you want to break down, worrying that the rest of the world won’t see him for the wonderful, joyful, perfect human being that God created him as.
When I have these moments, I have to turn off the computer or my tablet, stop looking at PECs or ideas for how to get my son to learn to communicate, and just take a breath. A few tears may come to my eyes as I take a deep breath and just let myself have a moment. Because honestly, we don’t give ourselves moments, do we? Moments to just sit in the worry and the sadness, because your special child has to work so much harder to communicate and live in an average world. We are so concerned with the routines, the tasks, the never-ending appointments we run through on a daily basis, that we never really LET ourselves have the moments where we sit, and cry for our child and the different world they live in than we do.
When this first started happening to me, Sam was about 2. Yeah, it took me that long. Sam had always been such a HAPPY, loving and affectionate child, that we never considered how he was not making progress in toddler milestones that doctors expected him to make. We knew he had Fragile X since I was pregnant with him, and honestly, the doctors were so adamant that our son would be born unable to function, fully mentally retarded (as they tactlessly said) that they pushed us about 4 times to have an abortion. All because he was going to have a different set of struggles than others. Because it was going to add additional stress to our daily life. As if that meant he was not worthy of life. So when our son was born perfect, strong, and healthy; and when he showed affectionate, laughter, and pure joy almost from the very beginning, we just knew we were blessed and he was perfect, no matter what struggles he would face or how much additional stress it would put on our daily lives. We accepted his weaknesses just as we accepted his strengths. Sam couldn’t crawl, or walk, or talk at the same pace as other children, but he hummed with songs he remembered, and he hit baby drums and toys against tables at the exact beat of songs playing. He was always so quick to laugh instead of cry, and always so affectionate, that we felt confident he would be who he was supposed to be.
It wasn’t until my daughter Summer was born that we started to see what others saw and commented on about Sam. Summer looked us in the eyes as soon as she could, instead of looking toward us. She followed us with her eyes, she mimicked our faces. She had the most adorable scowl for the first 6 months, because I guess I scowled in worry when I looked her over, as all parents do. As she made progress in her development, we started to see just how much Sam was behind. And then it just became overwhelming. Where do you even begin? Speech? Physical therapy? Feeding team? Should we look for special schools? How do I find a good school when I have to break down what Fragile X even is to most people? We had to reach out to so many people, so many doctors and specialist and explain about his genetic disorder, where he stood on development milestones, what kinds of worries we had, that is just became exhausting and depressing. I think we can all agree, that doing continuous screenings and tests and seeing in front of you on paper how much your child is not developing is just completely heartbreaking. Again, not for you as a parent, but because as a parent, you never want anyone, specialist or not, to be able to say that there is anything wrong with your perfect little creation.
Thankfully, I am married to an amazing man. During these moments, when I would feel overwhelmed, or like someone was trying to tell me my son was less than perfect, I had the absolute best support and best friend to turn to. Derek wouldn’t tell me things he didn’t know, he wouldn’t say “everything is going to be ok” when he didn’t know. He would just sit with me, agree with me how much it sucks that our son will struggle, and that he wanted to punch that doctor in the face too when she called Sam retarded. He would just hug me, and agree. And then we would look at pictures of Sam, or watch him playing on the floor, and smile. Simultaneously we would look at each other and agree, that even with the struggles, we wouldn’t change a single thing about him.
We need the moments. We need the down time. Because when we are in those down times, we look at our kids, and they raise us back up. The down times show us the truth of how hard it can be. But they also show us, that our children are warriors…they are fighters….they are special. And they are more than worth the daily fights we battle to give them the best life possible.
Take the moments.