We've Moved: Reflections on World Down Syndrome Day
Updated: Mar 21, 2022
I don’t see well. I got glasses for the first time when I was in second grade, and I needed them much earlier. The eye chart with the large E at the top only tests vision to 20/200 (-2), in which case the person would only be able to read the top line and no others. Even though I've had Lasik eye surgery, my near-sightedness is so extreme that I can't read that big E. I rely on glasses to be able to almost everything.
Because of my eyesight, I don’t enjoy driving in unfamiliar areas at night. I must still have a little PTSD from a hydroplaning accident I had in a rain storm when I was 17, because if rain gets added to the mix, I tend to freak out. The thing is, I LOVE to drive. I’m capable of driving and legal to do so, but there are certain circumstances when it's really hard for me to function well.
A few years ago we went on a family road trip. At my urging, we left before dawn. Rick was groggy, so I insisted on driving. It was still dark, but it’d be light soon. It was country driving. I’d be fine. Rick reluctantly agreed, we loaded up sleepy kids, and soon we were off and everyone but me was snoring.
But the time change had just happened, and the sun didn’t rise when I expected. Instead, I found myself driving on unfamiliar, dark, country roads with no street lights. Then it started to rain.
I felt like someone had put a dark blanket over all the world and tucked in the edges tightly. There was no light except the headlights on my vehicle. My knuckles were white on the steering wheel and for days afterward my jaw ached from clenching. I should’ve pulled over and asked Rick to drive, but I knew it’d be light at any moment. For an hour and half, I drove like that. Panic threatened to take over as I repeated to myself, “Focus on what you CAN see. It will soon be dawn.”
When the sun started to rise, I felt like the blanket finally started to loosen up around the edges. Hints of light broke through, and very slowly the blanket lifted. I peeled my fingers off the steering wheel and shook out each hand, encouraging the blood to flow back into them. I stopped gritting my teeth and loosened up my jaw, surprised at how tight it was. I turned on some music and started to enjoy the drive.
That experience has stuck in my mind ever since. During this last year of hard things, I have often felt that blanket tucked in around our family. No matter how hard we wiggled, it was still tight. I had to focus on what I COULD see. (“Thy Word is a light unto my feet and a lamp unto my path.” -Ps. 119:105) But it has loosened up and started to lift.
To my surprise, the scenery changed during our dark season and we’re in a much different place today.
Without realizing what happened, we moved.
It’s like our previous home was a lovely place of soft colors and a more neutral palate. It’s a bright day on a white sand beach. It’s Joanna Gaines decorating. It’s absolutely lovely, soothing, and calm.
Our new home has shadows that are so dark, we don’t want to go back in those places. But it also has vibrant, bright, exciting colors too. It’s like autumn at the peak of the season with colors you can hardly imagine are real, nearly knocking you over with their beauty.
When our first two miracles were born, the world was soft and warm. We cherished their perfect little bodies, marveled at their accomplishments, and staggered through sleep-deprived days. We watched them carefully, hauled them off to the doctor at the least hint of discomfort. We laughed at ourselves in relief when the EKG came back just fine, when the orthopedic doctor said that toddler feet tend to turn out, and when the x-ray showed that no sharp earring had actually been swallowed.
When Redmond was born, there was no laughter at our over-reactions. There were no warm cuddles while waiting for the swaddled newborn to nurse. There was no skin-to-skin in a hospital room decorated with soft blues and greens.
Instead, we went to an intensive care unit full of huge windows and shockingly bright yellow and orange furniture. Covered with tubes and wires, the baby was hooked up to monitors, naked and sedated. His life was saved through the miracle of modern medicine and supernatural answers to prayers. He was completely out of our hands. He became our fancy miracle. The other two were miracles from the start, healthy and whole in a world of broken and sick. He is a supernatural miracle, an answer to prayers prayed through sweat that was as close to great drops of blood as I’ve ever known.
Our scenery has changed. The colors have become more vibrant. Redmond never learned to nurse or take a bottle effectively, which led to some dark, frustrating days. Today, he’s eating food and drinking from a cup without the aid of a feeding tube. It’s like the sky is now painted in the deepest, richest blue while trees blaze with fiery leaves, and all the world seems to gasp at the beauty.
He doesn’t need open heart surgery. His hearing is perfect. He’s talking and meeting many typical milestones right on time. He’s learning to sit up, trying to crawl, and full of laughter. His little body is growing strong, he’s teething, and he’s talking.
We hold our breath in the doctor’s office while they wait for the reading on the oxygen level monitor. He’s been off supplemental oxygen for six months, but did we make a mistake? Our hearts twist inside our chests and our stomachs tighten when the reading slowly blinks red – 77, 78, 83… 100. My nasal passages burn and my throat tightens, trying to hold back the flood of happy tears that our nurse doesn’t need to see. His body is receiving 100% of the oxygen it needs to function, and he even has a cold. How can I keep from dancing? How can I keep from singing? How can I ignore the sensations of joy and relief that rush in?
Photo credit: Jeffrey Murray
Not only is the heavy blanket lifting, but it’s lifting in a field of wildflowers. The color isn’t neat or orderly. There’s no perfectly manicured lawn. But it’s the roaring laughter of God as He sprinkles light and surprise and wild sweetness over our home.
Satan whispered fear and lies into my heart. “What will life be like with a disabled child? What have you done to your family? You took perfection and messed it up. You are a greedy and selfish woman who wasn’t satisfied.”
God has responded with life and health, joy and peace. God has lifted His voice in song over us, filling us with unspeakable happiness and delight. God has declared Redmond a gift. It’s not smooth, easy, safe, or quiet.
It feels like we’ve been loaded on a roller coaster on a beautiful day in autumn. We can either grip the bar and close our eyes, waiting for the ride to end, or we can open our eyes widely and enjoy the scenery. We can throw our hands up in the air and yell, “Wheeeeee!” as our stomachs lurch and our hair blows back. We can focus on the fear or we can focus on the fun.
We were content where we were, but we’ve been relocated. Our journey is unexpected and untamed, but we choose to enjoy the beauty and relish the pleasure. Redmond is thriving. He is unaware of the rule book and surprising us every day with what he is capable of doing. God’s promise to me – life and health, joy and peace – is fulfilled in him. We stand in awe of our great God and His ways.
Edited to add... On 3/21/22, Redmond is five years old. He is speaking in some full sentences, walking, running, dancing, counting to 20 in English and 10 in Spanish. His favorite letters of the alphabet are "L,M, N, O, P, Q!" He says "Q" with special emphasis. It's adorable. His favorite person in the whole world is probably his big sister, and I think he's probably her favorite person too. He's made friends in preschool and he loves to go to his grandma and grandpa's house for mashed potatoes and homemade applesauce. He's funny, enthusiastic, and sensitive. He seems to know what stranger needs a hug and he takes his responsibility to comfort them seriously. We're still working on potty training, but he's getting there. His snuggles are the absolute best and I wouldn't change a thing about the description I wrote here four years ago. We are full of gratitude for our fancy miracle.