If you've been with me for the last few months, you know I like to switch it up. One week you'll get adventure pictures, the next you get a lecture on love and kindness, the next you get school updates, etcetera, etcetera.
Today we are going to go a little deeper again.
Into the realm of what it's like to be a parent of someone with "extra" needs.
I prefer to use the term extra. "Special" needs doesn't seem to cut it for me. We all have special needs. Needs that are unique to us as individuals.
What are some of yours?
Braeden, to me, has extra needs.
We are learning another language together (American Sign Language), so we can communicate effectively with each other. Within that, we are also able to share that language with others -- expanding their horizons and opening communication with others that use ASL daily.
To me, that is extra. It's a bonus.
I have to drive Braeden "to town," which is anywhere from 36-52 miles from our house, a couple times each month for therapy.
He has speech therapy in Calumet and physical therapy in Houghton. Let me tell you, I am not a fan of driving to town, especially in the winter with a morning appointment and a blizzard.
But it is important that he gets assessed. That I am given tips for further progression. That he is praised for what he has achieved in the last month. That we keep wow-ing his therapists.
The drive and the praise are extra. And they are both worth it.
Braeden has extra medical needs. Besides a yearly well-child checkup, he gets his blood drawn to check his thyroid levels and make sure his thyroid medication is at the right dose. Extra appointments and extra number checking for me to make sure that what the doctor says matches what I believe.
He had open-heart surgery at 4 1/2 months old. This May we go to see his cardiologist for a two year check-up to see how that operation is holding up. He will also see his urologist in Ann Arbor, Michigan this summer to make sure his urethra surgery is still keeping things clear.
I believe he is fine in both these areas, but I will go the extra (700) miles to make sure. For a half an hour appointment.
These are the things I've been doing from the beginning. Luckily, with the physical and emotional time and energy of grammies and grampies along the way. But to me it's "normal" until I realize how extra it really is.
The other day, Braeden came up to me, expressed his cuteness, turned around and walked away. But there was something about that moment.
Wow, I thought. I am raising that little boy. And he has Down syndrome. I am just doing that. Not everybody would do that.
And it's true. Not everybody would. It is a choice I make everyday. Not just to keep a small child alive, but to keep on top of all his appointments, all his medical records, all his therapies, all his progress.
To make sure we get out each day to bask in the glory of the snow or the sunshine or the lake. To have extra giggles while we have our dance party. To take extra time to show him my mouth while I sound out words that I know he wants to say. To clap extra loud when he actually does.
Having Brady P. in my life has taught me a lot. A lot, a lot. And I am grateful for the schooling that only he could bring.
He might be extra work, but he is so worth it. If you ever meet him, or you already know him, you know this to be true.
If you have someone extra in your life, I hope you know you are fortunate. And they are fortunate to have you.
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