Randomness is coming. I don’t know where this is going.
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He passed the first series of heart tests. (Heart issues are common among children with Down Syndrome)
He finally passed his hearing test. (Ditto for hearing problems)
He ate so well. (Those docs worried about this, too)
He followed things with his eyes. (A frustrating problem in the beginning of therapy)
He passed a toy back and forth between his hands. (Why does he favor one hand?! Why does it matter?!)
He tolerated bellytime. (Please no more screaming fits)
And then there was the long-awaited, hold-you-breath-for-it sitting, just recently. (We waited so long)
And then one night, a joke about our “easy” days being numbered. Moments later, our son crawled across the floor to chase a toy. As if he had been doing it for all of the weeks and months we hoped and prayed we’d see it soon. As if it were nothing at all. Our little guy crawled, over and over, sitting up, looking at us and flashing a smile as if to say “what are you guys all worked up about?”
He’s still uncertain and it’s now turned into almost a crab crawl, our physical therapist Miss Kathleen remarks, with his right leg stuck straight out to the side, inching forward using mostly his left leg and those strong, strong arms of his. We let him do it his way, so proud of his accomplishment, working gingerly with little tricks here and there to get those legs both behind him, zooming faster and faster. And already we move on to huger tasks and more impressive accomplishments.
Standing is next.
Holding on to the edge of the couch, reaching up with wide, curious hands. Pulling up on his parents.
He is taking off, we know this. There will be more accomplishments and there has been so much to celebrate already just in the past few days or weeks.
But still we hurt.
Scott and I find ourselves in a place we hadn’t imagined. Where the anniversary of Zack’s birth brings down a floodgate, emotions overtaking us as we see a different set of milestones than we had expected. Where the fact that our son can’t even grab at or feed himself his birthday cake is not lost in birthday party planning.
We’re skipping the cake, by the way, because it really is that hard to face that one.
Have you ever been to a first birthday party? We have. We know all the “criteria,” all of the usual moments and comments on first steps and all that jazz.
We are proud, proud parents. We love Zachary with every fiber of our soul. We have preached nothing but positivity and hope. But yes, we fall, we falter and we fail.
For us, next week is a one-year-anniversary of some of the worst days of our collective lives and of our life together. The birth of our son was every joy we hoped it would be, but it was followed by dark clouds that brought about uncertainty, sadness, anger, worry, concern, fear. This is an anniversary of a future we still can’t wrap ourselves around, 357 days later.
I have only three photos of myself with Zack in the first five days we spent at the hospital. I was leafing through a baby album of his the other day when I found myself flipping back and forth between those photos. In one, I had no idea that Down Syndrome had already entered my world. I was a happy, doting mother, ready to go home with my family and start our world together.
And then I became a happy, doting mother who was overcome with fear for her son and hurt for her husband, with a lump that still finds its way to my throat now and then.
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Earlier this month, I spent a solid two weeks crying each day on the way home from work. Work was fine, everything was great. It just kept.hitting.me. The Down Syndrome thing, not like it’s any surprise at this point. It just snuck on into my 20-minute drive, found itself in lyrics of songs on the radio or in families passing in crosswalks. Sometimes, it was a guest at the front desk at work. Sometimes, it was my husband’s eyes.
And then one day, I came home, tears wiped, shoulders up, holding on with all of my might. And Scott spilled the beans. That he had been facing those tough days, that it was harder now than ever before. And we talked. We talked so long and it felt so good. I cried tears so hard that I was sobbing. Sobbing like I had to put the baby’s spoon down and right there in the middle of his dinner, just pull him up from his high chair and hold him in so close to me, soaking his shirt with sadness and praying he would forgive me for being so weak.
It felt so good to share it with Scott. To link arms in the end, give a nod and a goofy smile and know that we would make it through together.
We laughed out loud for so long when Zack started crawling that first night — it was like our son was saying, “Knock it off, ‘rents, I’m doin’ just fine.” And he is.
My mind is in a million places these days, thinking about loved ones who need my strength and whose battle is much tougher than mine. (I love you, UP)
But at the foreground is a beautiful, beautiful, beautiful, beautiful boy.
I have two more days off with the little man and I intend to soak up every minute with him. Every smile. Every crawl. Every attempt at standing. Every babble. Every yawn. Every drooly kiss.
This morning, we’re crab-crawlin’ our way into trouble. We have found two diaper bags, a car seat, three stray burp cloths, a changing pad, a garbage can and NOT the three trucks, two ice cream buckets and 40 other assorted toys in the living room. Just seeing that right leg fly out to the side, palms flat on the ground, with intermissions of excited dancing in between moving from Point A to Point B… it all makes me feel such a happiness I never imagined. I have been smiling all morning.
And one more thing that has helped me so, so much?
The $809 raised so far by all of those who love Zack and support me and Scott. $809 which will go toward families like ours, first years like ours, hope and futures like ours.
Thank you for all of the amazing donations so far — and please consider a gift if you have a few extra dollars lying around and are able to spare a pizza delivery this week or a magazine at the supermarket or that new shirt that might go on sale next month… It’s the best birthday gift we can give Zack.
You can donate HERE.
Speaking of our donation page… exciting news coming up in a few days regarding that!!!
Have a great weekend. I will!