Zack’s progress has always happened in waves.
For every surprise accomplishment came a three-month lull.
For every time we worked on walking and jumping and stepping, out came his first words.
When Down Syndrome enters your life and the life of your child, it is a never-ending road of questions, uncertainty, fighting and pushing.
There is no cure, there is no this-is-where-he-will-be-in-five-years.
You must find your resources (Early Intervention therapists, other parents, National Down Syndrome Society, special needs classrooms, and most importantly, yourself…); you must find your support.
And then you just dive in, give it your best, never look back and never look too far forward or you’ll drive yourself crazy.
When Zack was born, we didn’t know if he would ever speak or ever walk on his own. We had no clue if he would have major health issues or zero concerns at all (he falls at the low end of the middle — we battle respiratory illnesses for months at a time, he had two small holes in his heart that do not yet require surgery and a Man Parts issue forced a minor surgery two years ago).
At the end of the day, our prayers for Zack are exactly the same as those for Addie — that they be self-sufficient, polite, responsible, independent, intelligent kiddos and adults. That they enter mainstream school, are loved by their peers and teachers, complete high school and college, find a job that brings them joy and a man or woman who makes them complete and throw a dozen grand babies our way. We hope for graduation parties and Empty Nest Syndrome and a first dance together at their weddings.
And while we hope for the same goals, we realize the journey may be quite difficult for one (or both!).
Zack turns four in August and then we have one year before he should enter Kindergarden, maybe in our local public school system.
But maybe not. Maybe it will be in two years. Maybe three. Maybe it just can’t happen.
We realize both sides of the possibilities, but still we fight with every freakin’ ounce of energy and every bit of resources to make what’s best for him, not us, happen.
So yesterday we met with his teacher and speech therapist from his special-needs classroom that he’s been attending two mornings a week since January.
Scott and I actually went into the meeting planning on gently removing Zack from the program as we felt he was with kids who demanded much more of the teachers’ attention than him and perhaps we just weren’t seeing the difference or the impact from there as we initially thought we would. It was a good problem to have, we thought. We were appreciative and we gave it a whirl, but hey, our boy is doing great in his “typical” Preschool three days a week!
But then we all got talking. Openly, honestly.
And we have a plan.
There is something about having a plan.
Even if it means more work or more time or more challenges at first. It’s a plan. It’s a step forward. It’s one step closer to that first day of Kindergarden at public school two miles up the road. The day I have been praying for and fearing for quite some time. Where I will lose my —- and bawl at the astonishing journey. But we’re not there yet, so hang tight Ole Emotional Momma.
So, in August, Zack will be trying the afternoon class at this location four days a week, while still maintaining his mornings at the other school. The afternoon class has more “advanced” kids and is a bit more challenging. And it’s primary focus? Kindergarden preparation.
It’s a no-brainer.
Four days may be too much, both schools might be too much. But, it’s my style to go all the way in and retreat a bit if necessary.
A woman I’ve only just recently met through Mary Kay wrote me a letter for Mothers Day. She follows our family through social media and her asking about Zack and Addie is always the first thing to happen when we are in the same room. That means a lot and I’ve always appreciated that.
But then, this letter.
I had actually received it two days before but in all the business of the week, it stayed tucked away in a bag until Wednesday.
This amazing woman of faith and strength shared that she had two special-needs children herself.
She gets it, I understood.
You see, just like the unwanted Motherless Daughters Club you are initiated into without request, so too is there a Special Needs Children Club that is scary yet so rewarding. The bond between we mothers is indescribable.
“I understand the day-to-day struggles and the day-to-day victories,” she wrote. “What some parents see as a small accomplishment, we see as a victory dance worthy.”
I smiled, I cried, I laughed out loud during her letter.
“God knew exactly the kind of Mom that Zack would need,” she shared. “The kind of Mom that would love him, protect him, nurture him, and yes, even fight for him. The kind of Mom that would get that glow in her eyes when she talks about him, post his artwork on FaceBook and sell Mary Kay so she could be home with him and his sister.”
The day I read that was a Battle Day. Battle with the kids’ strong wills. Battle with myself. Battle with DS.
And I opened that letter and it reminded me.
Not only am I not alone, but I am not allowed a pity party.
Zack’s parents, his family, our friends, even strangers are all working together. None of us know where he’ll be or what he’ll be doing in six months or six years or when he’s 26. I scare myself thinking about all the uncertainties.
But, like we said at the parent-teacher conference, we are all Team Zack.
Whatever it takes, we do. Whatever is recommended, we try.
Leave no stone unturned.
The thing is, even if he doesn’t go to college or marry a sweet partner, he will be happy, of that I’m sure.
And even if we never get a dance at his wedding, it’s alright, because he comes up to me several times a day, bows at his waist with a giant smile, holds out his arm and asks me to dance. I can never refuse.
And let me tell you, he’s got some great moves.