Two weeks before Alex was born he was stretching a lot. I didn't think anything of it because we were so close to the finish line (and let's face it, I'm not the biggest person in the world). I just assumed the little guy was running out of space. Two weeks later we were at the hospital ready to have Alex when they discovered an issue. Alex's head was shoved all the way back and stuck. They had to do a C-Section for fear of breaking his neck. He slept for months with his head all the way back and his pediatrician referred to it as "Stargazing." I have to admit, the poet in me loved that term!
Alex was quiet and we noticed he just wasn't making many sounds at all. Over time we noticed he was struggling to do more than just speak. We had Logan one day before Alex was 16 months old. We began to notice that Logan was doing things that Alex couldn't do. During this time we also noticed Alex had a bone disease (all three gremlins have it and all three gremlins have had surgery because of it). We were sent to specialist after specialist -- Pediatric Orthopedic, Neurologist, Pulmonologist -- the list went on and on. We added therapies to Alex's daily schedule and did activities at home to help him. Do you have any idea what it is like to watch your child struggle to do simple tasks? To watch him have trouble holding and using a fork, writing, even smiling is difficult. His neurologist eventually told us that there was an abnormality on the back of his brain, near the top of the brain stem. No one is certain, but they think it could have been caused when he was "Stargazing" in the womb. This news was hard for me because I kept thinking things like, "I should have paid more attention," and "If only I had called my doctor." The truth is, we don't know how long he was actually in that position and there was no point in blaming myself. I took a deep breath and decided that feeling bad would do no good because I couldn't change anything. I could, however, be the best mother I could possibly be for Alex (and the other two gremlins) and make sure he gets all that he needs.
I keep talking about Apraxia and the Apraxia Walk here in Stillwater on November 1st. I'm sure a lot of you are tired of seeing these posts about the Apraxia walk. Rest assured that after the walk you will cease to hear about it. However, this is our life. I watch my eldest son cry and get frustrated as he tries to do things other children (including his brother) can do with ease. I hear him ask me time and time again why he is different. I watch people stare at him and treat him differently. No parent wants to see their child struggle, yet this is a daily reality for us. As a mother my heart breaks as I watch my child struggle, watch him get upset, watch people look at him differently or treat him differently. As difficult as it is for me, I can't imagine how difficult it is for Alex. To actually KNOW what he wants to do but not be able to do it. I can't imagine how frustrating that must be for him. How discouraging it must be to talk to people only to have them tell you they don't know what you're saying or to have others treat you differently. I have an idea of how hard it is because I witness it each day, but I don't walk in his shoes. Yet, each day I watch him try. I watch him get frustrated, then try again, refusing to give up. I hold him as he cries when something is too hard or he just can't seem to do it. I hug him and cheer him on when he finally does something after trying over and over again.
The other night Alex was reading a Spider-Man book to me. He still struggles with a lot of words but is doing better every day. One of the pages talked about how people treated Peter Parker differently. Alex said, "This is why I love superheroes. They're not usually the popular kids, but they're different, just like me, and they can do awesome things." I smiled and said, "Just like you?" He looked up at me with those beautiful blue eyes and just smiled!
There are people who post a new selfie of themselves every day. There are people who tell us how many beers they drank that night. There are people who complain constantly and/or pick fights with people on social media sites -- if all of these things are acceptable then talking about my own life/our journey should be just as acceptable. I never knew how much we could learn from a child before Alex. He has been an inspiration and has taught us so much about life. He is our real life super hero and I'm so thankful that I get to be his mother!
