Like the Storm in the Night

……Sydney……

The name that carries so many emotions.

“Girllllllls!! Wake-up, Mom’s water broke, we’ve got to get to the hospital,” dad’s voice echoed into our room. My eyes opened, I looked at the clock: 12:26 am!

“Oh my Gosh, how cool is this, I’ve always wondered when it was going to happen!! This is it! It’s go-time!! Yesssss, no school for us tomorrow, yahooooo! Thank you, unborn Sister-making life better and you aren’t even here yet!” My skin was tense and chilled with goosebumps, not only from the cool night, but from the unknown entangled with an excitement only an eleven year old big sister can fathom.

My younger sister, Steph, and I had never moved so quickly. We were in the van before Mom could even waddle her dripping legs down the hall. It was a stormy April night, 1996. I can recall the details in color.

Thunder boomed and neon yellow lightening dashed about the eerie Arkansas night sky, a foretelling of how the night would unfold.

The van ride was filled with so many thoughts, “I hope Mom is safe, I hope there isn’t a tornado, if there is a tornado where will Steph and I go since we aren’t allowed in the delivery room, I cannot wait to meet the baby I’ve waited my whole life for, I can’t wait to watch her grow up, I can’t wait to hold her and play with her, it’s going to be so neat to see my parents with a baby, those clouds look pretty scary, Steph—- are you ready to be a big sister?” EEEEEEEEeeekkk, the suspense was growing with every mile behind us.

Once we arrived at the hospital the brightness of the fluorescent lighting and the stark white halls felt blinding, Mom and Dad said their, “See ya soons,” and were ushered to the delivery room with great joy.

They’d always teetered on the brink of “Yes, let’s have another, and No, our girls are too big- it’d be starting over.” But on this night, they were like two giddy first-time parents about to meet their Love in the form of baby, all over again. It had been eight years since there’d been a baby in the home. And, even as a child, I was keen on their love for each other and this new life they’d created together.

Mamaw and Papaw showed up within the hour. Thank Goodness. The nurses were kind and had turned on some Disney movies, brought us Shasta Cola in cute teeny cans, and Mamaw brought crayons and coloring books. You can always count on Mamaw to have some form of entertainment in tow.

Labor and delivery was a “quick and “easy” 3 and a half hours,” I’ve heard Mom recall. But for the sisters who had begged for this baby for YEARS, it felt like a small eternity. Before we knew it, Dad was hustling out to greet us with that proud new-dad smile, “She’s here! It’ll be a few moments before you can come in, but Mom’s doing great!”

Time. Passed. Slowly.

When Steph and I were able to go back, the emotions were intense, such a big love already manifested in us… I easily recall being mesmerized by her tiny perfectly manicured hands and nails. She was swaddled in the cutest baby burrito fold, but her hands had broken free, and although they were pale and cool, those tiny little hands were just like mine. I’d always been told I had beautiful hands and nails, and here I was, standing in awe of this miniature human, who had MY hands. My hands. It was Love right there in front of me, in the purest form.

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Those moments of light and airy exhilaration were precious, but short lived. Within the hour, our Sydney was being ushered to the nursery with a team of folks surrounding her. “What was happening, what are they not telling us?” Dad, Steph, and I stood in the nursery window as unsettled onlookers. We could see Sydney wiggle uncomfortably with each poke and prod.

Going back to Momma’s room, we were met by a freshly wounded woman, not only bodily wounds, but a soul that was desperate for answers. Steph and I decided to spend some time resting on the extra bed as Mom, Dad, and the doctors conversed.

Later we would learn that Syd’s pale white hands I had so admired, partnered with her score on the Apgar scale, and her shallow breathing were all tell-tale signs that our precious baby had Down Syndrome. But, because nothing had shown on any ultra-sound the entire pregnancy, the medical team explained Sydney would need further testing. They decided she would be better served at the neonatal unit at Children’s Hospital.

I watched as the Doctor pleaded with my mom to rest, she’d literally JUST given birth. But-she wasn’t having it. She got up, packed her bags right back up, and paced the floors, aching for nothing more than to be wrapping that new baby in her arms, she was so excited to nurse a baby again. But instead, she looked on at the baby in the incubator and waited anxiously for the Angel Flight helicopter to arrive.

I’ll never forget our nurse named, Hope, coming in to chat with Steph and me. She saw how fearful we were, and tried to ease our minds with talk of how amazing Children’s was, but when I blatantly asked if Syd was going to die, she didn’t say no.

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I stood by Dad in the second story window. We stared ahead, dazed. The soft tiny little baby girl of my dreams nestled in the hard plastic incubator alone, being rolled out to the giant helicopter. “Would this be the last time we saw her alive?” I looked up at Dad for some sort of reassurance, but instead I saw silent tears dripping from his face. He was afraid. I’ll never forget that moment, he was feeling all the fears I was feeling but at a greater magnitude. I turned my head away from him, to give his heart the privacy it deserved.

And then I watched as that long-prayed for Sister of mine, took flight.

I can’t tell you what the build-up of excitement for nine-long awaited months, culminating with uncertainty, and ending with outright despair and fear does to an eleven year old’s mind and heart, but I can tell you, it isn’t a lesser than experience than that of an adult. It’s obviously different from a parent, but it is not less than…

My Mother, my Queen.

As the helicopter holding our angel-baby disappeared out of sight, momma got up, left the hospital without the doctor’s approval, and made it to Little Rock by the time our Sydney arrived. Momma would be in the know every step of the way concerning her baby.

Steph and I however, left the hospital that day, not only without our baby, but without our parents.

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And we didn’t know that just those few short hours earlier, on that stormy ride to the hospital, that those words, that that conversation, would be the last we’d ever experience with this version of our parents. The only version we’d ever known, fading into the distance of our memories, like the storm fading into the distance of night….

Our parents would never be the same….

Our lives would never be the same, either…

It is said that people have these moments in their lives, really really big moments. Moments that break all typical neurological pathways and forever change the make-up of who we are.

Syd is one of my defining moments.

With Sydney, I learned nothing is as it seems. You can do all the right things and still end up in a place you didn’t plan for. And, it doesn’t mean the place is bad, it is simply different.

Sydney showed me that genetically typical doesn’t mean better.

I got to witness in Sydney, the fiery spirit within those precious humans that have Downs. She fought hard to be able to do things other babies and children did naturally, even when it hurt, and there were tears, our long awaited for baby pushed through.

I will say, that same fiery spirit mentioned above has humbled us all. As a child, my mom had to rescue Syd from softball fields, from entering into the middle of volley ball games, and even off the basketball court. Honestly, I didn’t know mom could slide across the court so effortlessly in one solid swoop to collect said child. And, Syd, man—- she will not give up easily. If you think you can win a battle with her-just try to give her one piece of cake and see what happens…

And my parents. Oh, my precious precious parents. Love Unconditional, Selfless beyond recognition at times. If you EVER EVER desire to bless WORTHY humans, I urge you to run in the direction of parents who are raising children with special needs. If you have not lived it, than you just don’t know. Drop them a gift card for dinner and a movie, drop them a bottle of wine—-ehh, make it hard liquor, drop them treats of ANY KIND. What they don’t need is the silly accolades or sayings like, “I can’t think of a better person to raise a special needs child.” Um no, just don’t. All I’m saying is, if you can-bless these people in real time, they wear their hurt so well…And, just because a special needs child has an adult body, please understand for many, it is still a full time care-giving job required of these parents. It can easily go unnoticed, PLEASE TAKE NOTICE.

The day after Sydney was born, I drew a picture of our home with an angel standing over it, wings and arms stretched wide, halo glowing all around. Mom and dad were holding hands, Syd was bundled in Mom’s arms, and Steph and I were holding hands beside them. I titled it, “Angel in Disguise.”

Now, if I could re-do the picture, I’d remove the figure above and place the halo over Sydney. She has been the angel all along. Teaching us new ways of being and forever forcing us into merciful compassion for others.

She was my defining moment…

And if willpower had a name, it’d be Sydney.