These infographics are helpful. But, they’re definitely overviews. They’re a list of some of the facts. That’s good. We need facts. But, the reality of life for a little one affected by Apraxia and the reality of the lives of their family is far less simple than this nifty, sharable page would lead you to believe.
Our Julian was diagnosed with Apraxia at age 3. He’s now just shy of 9 years old.
Here is a bit of his, and our, story…
When Julian was born, my world was lit with a bright light, full of possibility. This sweet baby boy, placed into my arms at 3:00 pm on June 23, 2006, was a new day. He was a new way. For me, for his Daddy and for his brother.
I remember in the weeks just before giving birth to our second son, I felt afraid. I felt panicked, really. Two? TWO?!? Two of these little humans? In my care? Always, all days?? Panic. I felt inadequate, unable to keep up with my one energetic toddler most days. How on EARTH was I going to have ANOTHER?
But, then… he was born. And he was home. And he was just… ours. And he was perfect. I remember sitting on the couch, balancing my newborn and my toddler on my lap, thinking “I am a mommy to two.” ❤ And I breathed and smiled. And I knew we would be okay.
And so began our journey as a family of four. Many days, so many days together. No days were all good and no days were all bad, but rather, everyday was like a splatter painting of thousand colors, flying freely and landing where they may, creating a messy, colorful, one of a kind day, each and every day.
Micah loved his brother, Julian. Once he figured out he was staying around, he warmed up to him and it wasn’t long before it was all kisses and (“gentle, gentle!”) snuggles. Julian adored Micah. Adored. Once he was mobile, there was no keeping him from following his big brother’s every move, from finding a way to be wherever Micah was.
We were young parents, a young family. Our boys were silly and loud and smiley and frown-y and we didn’t have a clue what we were doing with them most of the time. Micah ate chicken nuggets everyday because I couldn’t get him to eat anything else and it didn’t occur to me to read a parenting book about the matter until (a wiser) someone handed me one and even then, the ideas in it completely overwhelmed me and I heated up another serving of chicken nuggets. Julian ate everything I put in front of him, because I really did put everything in front of him after I realized that I had singlehandedly turned Micah into a picky eater. Erik worked long, hard hours and he did everything he knew to do to be good to us, his wife and his boys. We went for walks, we ate too much fast food, we hung out at my parent’s house every weekend. It was a good life. A simple and good life.
Why am I telling you all of this in a post that is meant to be about Apraxia Awareness Day? Because… these disorders, the many disorders that have names like Apraxia and Autism and ADD and Sensory Processing Disorder and on and on… These disorders that bring red flags for the pediatrician and a serious, sympathetic face from her as she asks you way more questions than you’d ever been asked with your first baby at his well check-ups. Then appointments with specialists, then tests and evaluations and scores that get you a diagnosis, or no diagnosis and all you want is a diagnosis sometimes and then you get a diagnosis that you know isn’t right and then… then, you just want to go back to that hospital where that baby boy was placed into your arms, that new day. That day when all the possibility in all the universe was placed into your arms with him. And you want to start all over because surely you’ve done something wrong. Or you missed something. Or… maybe you just want to live it all again, all the simple days that you didn’t realize were simple at the time. Those days were so good and you didn’t even know it. And now, here you are, in this mess of paperwork and questions, your Grandma on the phone asking if your baby boy, your sweet baby boy, will ever talk. Will he? Will he ever speak words to us?
I’m telling you this, because behind every diagnosis, every disorder, is a person. And a life. And a voice. And a family. And a journey. And behind our diagnosis was a whole lot of hope and faith and believing.
I’m telling you our story, because from my point of view, people care a lot more about other people than they do about a disorder, a disease, a word on a bumper sticker that means nothing in their world. How about the face behind that awareness day sticker? How about the life that’s affected by the disorder everyday? My part in bringing awareness about Apraxia with this blog post, or awareness about Multiple Sclerosis in another post, is showing a bit of the lives behind the diagnosis, behind that Facebook profile picture that’s been changed for the week. It’s a person, it’s people. People just like you. Children just like yours.
Why is awareness important to me? To Julian? It’s important because before Julian, I had never once heard of Apraxia. After Julian, I have never once heard of Apraxia outside of the speech therapy sessions, the doctor’s offices, the special education department at the public school, outside of the online parent’s support group. I have never heard a person who isn’t directly affected by Apraxia speak of it. But, you know what I have heard? And seen? Many kiddos who deserve voices. Just like Julian does. Many kids who want to share and connect and engage with their families. Kids who want to make friends and play tag and sing songs.
Apraxia is a piece of our lives, it’s a part of our story, it’s a battle that Julian fights (and wins) everyday. It made some years very, very hard for him, and for us. It was the thing that most shaped our reality, our days, from 2007 to about 2013. And we aren’t fully sure how it will affect his future. But… it is still only a piece. One piece of many, many more that make up who Julian is. It’s one color in his glorious splatter painting. It adds depth and strength to his master-piece. And some days, it takes away. Some days, it covers up other colors.
I would love to continue telling more of Julian’s story. More about this boy whose life is just as infinitely full of possibility as it was on June 23, 2006, when I held him for the very first time. Be on the look out for more. It’s just too much for one post.
Today is National Apraxia Awareness Day. That’s huge! I am wearing blue today, along with my family, in honor of Julian and all of the other children who bravely stand strong every day in a world where they can’t always be heard and understood. And I am wearing blue in honor of their families who see them for who they are, not for what they can or cannot do. And in honor of everyone who never stops believing and hoping for more words, for more and more and more words, for these precious children.
You can visit http://www.apraxia-kids.org to learn more or show support! Thank you for taking the time to read this. ❤