UPDATE: We have raised our goal — again! — this time to $1,500. We have six days until Zack’s birthday and I’m confident and hopeful we can make this goal! The Z’s thank you for your love and support so far…
Our Little Man is approaching his first birthday. In just a couple of weeks, he will be one year old and no longer a baby. It has been a long, amazing, unexpected journey these past almost-12 months, to say the least (more about that in another post).
When I asked Zack what he wanted for his birthday, his immediate, selfish reply was “food. Lots of food.”
I reassured him that his loved ones enjoy the carrot-filled faces and pea-soaked raspberries too much to starve him. Plus, he needs food to survive. I gave Z-Man one more chance for a good answer.
After some careful thought, one dirty diaper and a three-hour nap, Zack said he wanted to help all of his other friends out there (like Nella, Colton, and others) since he had enough clothes and since his parents keep getting rid of old toys every time he gets new ones.
“I want to make a difference, Momma,” is what I think “Blee — ababababa– Ma” means.
And so, the Family of Z’s will strive to make a difference in honor and support of our little guy.
In lieu of presents, however nice they are and however much you think a new onesie will help our already-overstuffed closet situation, we ask that any loved ones and supporters wanting to spend $10 or $100 on Zack think about donating to the National Down Syndrome Society (www.ndss.org).
Zack’s donation page can be found here.
I started with a goal of $500 when I started this last week. We’ve passed that number, quicker than I could even pull a post together. 15 people have donated $590 so far. FIVE-HUNDRED-NINETY-DOLLARS raised because of our son. That’s so amazing and I wish you could see the glee it gives me to race home, pull up the website and check that day’s totals. I’m addicted. I’m so inspired.
I can’t help but think back to when each of these people were told of our son’s surprising diagnosis nearly one year ago. For some, there were tears. Others offered long e-mails and messages filled with hope and encouragement. Still others let us know that our son was no different to them than their own children. That he was loved and accepted. That he and his family were going to be just fine.
Zack was moving around on the floor this morning, doing his backwards scoot and forward flop until he had wriggled and wiggled his way around most of the living room. I watched from a distance, knowing he needs to learn the pain of a thump on the hardwood (safely of course, people, no worries!) to learn the importance of balance and strength and keeping himself up. I know I have to let him get frustrated to give him independence — which may prove to be one of the most important gifts any of us can give him.
There were smiles and babbles, the occasional look up to Momma with a goofy grin.
And then he got himself stuck.
He wiggled his way right under one of our small tables. The back was blocked by a chair, both sides like bars enclosing around him. I could see the panic develop. He hasn’t yet fully gained the forward motion, but that didn’t stop him from trying.
He was there several moments, hands touching the sides of the table, feet flopping up and down in annoyance.
He looked up at me time and time again, becoming more upset and frustrated, the grin turning into a furrowed brow and pouting frown.
“You can do it,” I urged him.
He needed a little assistance, but The Dude was finally released from his little prison. Before we knew it, that moment was a thing of the past and we were enjoying our cereal and peas.
I know that “trapped” feeling well. I felt it for weeks, maybe even months after Down Syndrome came into our lives.
I remember just two days after Zack’s chromosome test came back positive, Scott went back to work and I was alone with a new baby, a sore body, a horrifiying diagnosis, anger and an aching heart.
We watched a lot of Little House on the Prairie that morning. Episode after episode amidst naps and feedings.
I was numb. I was lost. I was scared.
Or so I thought.
Sometime that afternoon, I pulled my laptop close to where the baby slept at my side and typed “Down Syndrome” into the Google searchbar.
The first web link had a lot of medical jargon, something about 47 chromosomes and a lot of terms and thoughts that just pissed me off.
I hit the “back” bar on my browser and was just thinking what a bad idea this was when I tried the next link — http://www.ndss.org.
The mission of the National Down Syndrome Society is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome.
The National Down Syndrome Society envisions a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations, and become valued members of welcoming communities.
That’s it, I thought. That’s how we’re going to handle this.
That jumble of words brought so much hope to my aching heart. I just about jumped Scott at the door that day, surprising him with my desire to be positive and my wish to simply do our best for Zack.
By the end of the day, a mass e-mail was sent to friends and family, telling them not just about a diagnosis but about a wish for Zack’s future and our family’s outlook (plus facts from the website, dispelling myths and linking them to places of support for themselves as well). That week, we had reached out to support groups, locally and nationally; I found my favorite blog; set up an appointment with Early Intervention.
I’m a do-something-positive-from-a-hard-learned-lesson type of person.
I offered counsel every year to my girls’ cross country teams and became President of an eating disorder awareness group after going through years of anorexia and bulimia.
I was trained at a women’s shelter after watching my mother suffer physical and mental abuse as a child.
And now, I hope to raise money — and more importantly, awareness — for my son’s future and the support of hundreds and thousands of families like ours.
Down Syndrome isn’t what we planned; and for a while, we let it trap us on three sides, thinking there was no getting out of a dark, dark place. But what we’ve learned from places like NDSS, Parent-to-Parent, local support groups, unofficial support groups like new friends and old friends, family near and far and most definitely from our son, is that we can’t forget about the one open side. There is always hope. It may be against odds that are 3-to-1. It may be hard to find sometimes. But we’re not alone. And we’re not without an arsenal of weapons.
Baby food smiles, hugs, giggles and accomplishments, so many accomplishments.Phone calls, e-mails, cards, messages, love, love, love.
And so much hope.