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I've been traveling this week. See you next Wednesday!
Wednesday, March 21, 2018
HAPPY WORLD DOWN SYNDROME DAY!!!
I never knew a day existed to celebrate Down syndrome until I had a child of my own with the extra 21st chromosome. When I learned it was on March 21st, the first day of spring (well, this used to be the first day of spring!), I thought that was perfect.
Spring represents a new beginning. A waking up from our long hibernation. So to celebrate a condition that used to be left in the dark and cast in the shadows with the light of a new beginning sounds like a fantastic parallel.
Also, the earth is in perfect balance between darkness and light. Between the shortest and longest days of the year.
I took that idea a step further, and remembered what Martha Beck wrote in her memoir Expecting Adam (a fantastic read, by the way). To start the book, Martha was speaking with a psychic. Martha's son, Adam (a three-year-old with the extra chromosome), was coming through the psychic to tell his mother to relax a bit. That it was all going to be okay.
What struck me most was when the psychic said, "He's on both sides of the veil." (*I am paraphrasing this section, as I am unable to find my copy of the book for confirmation.)
Now, I don't know what you believe about spirituality or religion, and I'm not going to tell you what I think you should believe. But what this woman was saying was that Adam, a small child with Down syndrome, was both on this earth in physical form and lingering in the spiritual realm beyond what we can see.
At the same time.
At the same time.
I instantly thought about Braeden when I read that. His wholeness, wisdom and ability to connect with everyone had me believe that my own son was on both sides of the veil as well. And still is. And probably, so are all people with this extra chromosome.
They know, see and feel more than most people.
They are in perfect balance. Just like the earth at this time.
I cried when I learned all those things.
And now I celebrate today with a joyful and purposeful heart...
And CrAzY socks!
One way to raise awareness for Down syndrome is to wear crazy socks today. Show them off. Take a picture of your wildly clad feet and post it on the internet. Get together in the office or school or grocery store with all the other people wearing crazy socks and hang it on a billboard.
Because Down syndrome is cool, man. It's really cool.
I am down with Down syndrome.
Below is a video that totally jerked my heart strings. 50 mums and 50 4-year-olds with Down syndrome doing karaoke in their car. They are lip syncing and signing the words instead of singing.
Seriously. Take 4 1/2 minutes of your day and check it out. It's World Down Syndrome Day!
What really got me was seeing the moms' reactions to their children. The beaming pride. The deep, genuine love. The spontaneous laughter from spontaneous goofiness.
I experience those things with Braeden everyday. And maybe all moms of all types of children do! I can't really compare because I am only Braeden's mom. That is what I know.
It is also something I love.
And I would not trade it for anything else. You couldn't offer me anything in this whole world that would make me want to take away my son's extra chromosome. It is truly a gift. A gift that gives love everyday.
A gift in perfect balance. A gift of a new beginning.
Wednesday, March 14, 2018
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.
Wednesday, March 7, 2018
Even though we had a teaser of spring, it is still winter. The fresh few inches of still falling snow just keep proving it. But hey, it's the Keweenaw. What do we expect?
Braeden and I expect to make the best of it. Today is the first day I had to bundle him in his one-piece snow suit since he's been back from Wisconsin. Otherwise he had the freedom of his lined nylon pants and jacket. Room to run, run, run!
And run he did.
On Friday he ran and pushed his wagon almost the whole way from the Lake Fanny Hooe boat launch back into town. At one point we stopped to listen to a wood pecker in a tree, and I realized he was panting. Really panting like he was working hard.
For a child who had open-heart surgery three years ago, the panting, rosy cheeks and energy to sustain his pace was a miracle to me. He is doing awesome!
He has also been running along the road to get to the creek in my love's neck of the woods. We'll run to the creek, then find a nice spot to watch the sunset. Sweet Bryce will stomp off chunks of snow to throw and sploosh into one of the few spots of open water on Lake Superior's shore (from the running creek). I make dramatic splooshing sounds, and Braeden throws his arms around like a splashing wild man.
"More," he signs after each snowy boulder splashes and busts apart in the shallow water. Bryce stomps off another edge of the banks.
I admire him as he exerts all that energy to stomp boulders of snow for Braeden's entertainment -- the bigger the better in Brady P's eyes. Then he climbs up the snow mound and lifts a dripping snow chunk over his head.
"Are you ready, Braeden?" he asks.
Braeden smacks his head for a yes while his mouth opens in extreme excitement at the size of the next chunk. I am amazed myself.
"Kasploosha kapew kapew bawoowoowoosh!" I shout as the splashing commences.
Braeden flails in delight. And signs more.
Mama and Brady P. watching a sploosher
Bryce even took our picture during a sploosher. Pretty nice view for splashing in the creek!
On Saturday, the Copper Dog came to our town. The block was nuts. It was like Fourth of July in Winter. My body went slightly into panic mode as I saw all the people moving about.
But Braeden didn't seem to notice. He just held my hand, looked straight down at the icy slush his feet were stomping through and marched straight ahead. He only looked up to point when he heard a dog barking.
After a walk through the crowd (and his nap) we came back to try the dogsled ride. One of the mushers ran his six-dog team that afternoon in the midst of three days of racing 150 miles to let 50 kids take a ride, two at a time. Bless his heart.
Braeden didn't want to go.
I asked him two dozen times. "Do you want to ride with the puppies?"
He shook his head no each time. So we waited in a nearby bank, so he could at least watch the dogs and be next to them.
Rosy cheeks waiting for the doggies
The dog team is in the upper right corner under the cedar trees. But this was the only picture where Braeden was smiling, so I used it!
Sooner than I thought, it was his turn to ride with his friend Maddie from school. He kicked and screamed.
"He can go with you next round, Mom," the helper told me. I was relieved -- for B and Maddie.
At our turn, I plopped down and set him on my lap, half expecting him to cry and flail. But the dogs started running right away, and he had no time to figure out how he felt about the situation. He was instantly excited to be moving and see the puppies running ahead of us.
He pointed and squealed in delight the whole way. We had a great ride around the park. Whew! And another new experience under his belt.