I’m just gunna come right out and say it. MY KID IS THE CUTEST. I mean, I know your kid is cute, and I have seven other babies here on earth (and little Joseph John James in heaven) and they are cute.. but even they will tell you. Thaney is THE cutest. He just is. Full stop.
That first beautiful night, holding him, I was so rolling around in that. I held him cuddled into me. He was a snuggle-down-in kind of baby right from the start, and I basked in the all-encompassing cute of my kid.
I also reveled in the health of him.
I mean, I was warned of all the possibilities , but he didn’t seem to have any of them. He popped out and my mother exclaimed over and over thru her tears “he’s perfect! he’s perfect!” and he was! Breathing difficulty. Nope. Heart trouble. Nope. Kidney issues, (he pee’d on the delivering doctor). Nope. He scored near perfect apgars, and I saucily smiled to myself when the pediatrician noted to a nurse that Thaniel seemed to have “really good tone”. He was six weeks premature and still a whopping 6lbs 8ozs! I had delivered a giant healthy perfect baby boy!.
It appeared as if my boy had dodged every Down syndrome bullet there was. I was gloating in a new mom of the worlds cutest baby kind of way.
When all of the medical stuff died down and Thaniel and I were safe in our room I took a good look at this sleeping angel. All of the worry and doubt slipped away. I could so do this. Down syndrome schmindrome. I nursed Thaney and he slept and I slept and I was at peace for the first time in months. He didn’t wake for hours. I even gloried in that. Already he was showing to be an easy baby. He didn’t wake with the morning light, so I woke him and tried to nurse him. He wasn’t really interested and fell back asleep. Well, he had just been born! that’s hard work. I let him sleep. I facebooked his arrival, talked to friends and family on the phone, and Thaney slept. I woke him again a few hours later and tried to feed him. He was grumpy about it, fussed and fell back to sleep. His diaper was dry. He slept. He was sleepy, he slept, he didn’t cry, he slept, he didn’t eat, he slept. He slept. He slept. He slept.
I had a nurse call the pediatrician, and since we were to be released the next day, she mentioned he’d have to sign off on our release anyway. My perfect baby boy slept thru his pictures, thru my family coming to visit. Thru the nurse getting his weight. The pediatrician came and checked Thane over and relieved my fears. “He’s just worn out, he’ll wake soon and then you’ll never get any peace”…
My nurse gave the doctor a hard time. She didn’t agree. He didn’t care, he was used to this perfect storm of a Caribbean nurse being vocal about her opinions. He left. Thaniel went back to sleep. And my beautiful mouthy nurse said to me “Don’t you let these ones send you home until you KNOW dat baby is ok” I tried to go back to that first beautiful night, with my perfectly beautiful son, who perfectly put me at ease, but I couldn’t. A nagging gnawing growing roots fear was starting to climb from my spine up into my sub-conscience. Thaniel slept. I prayed.
Somewhere in the hours right before night, my nurse came back in, to check me, check Thane and say goodnight and goodbye. She was ending her shift and wouldn’t see us again. She took Thaniel out of his swaddled blankets and tickled him under the chin and patted his back and said her goodbyes and then laid him down, and when she did, he spit up. green. If I had been alone in the room I would have changed his clothes, threw his blankets in the big bin of linens in the hall and that would have been it. I wouldn’t have known. Green bile, no appetite, lethargy, a big round tummy… I wouldn’t have known what those things laced together meant. By my beautiful nurse did. She called for the charge nurse, who called for a doctor, who called for a transport down to their NICU, who called for tests and someone from across the street at the children’s hospital to come take a look at him, and that doctor then called me into the NICU (where my son now had a tube down his nose, into his tummy sucking all that green stuff out) and explained to me that my son had a blockage somewhere in his bowels. He used the word ‘obstruction’ followed by a lot of information about Down syndrome and this complication… I heard obstruction and stared hard at him trying to hear the rest of the words.
He mentioned “Hirschsprung’s disease” my brain heard Hirschsprung’s DISEASE” He mentioned huge words. Surgery, necrotising enterocolitis, colonoscopy, colostomy, ileostomy, stoma…it was like an ocean of terms flowing over my labour weary mind and washing away the peace and calm of that first beautiful, perfect, smug night. My cutest boy had NOT escaped unscathed. I was NOT better than all of the other parents who had walked this road, I was afloat just like they were, I was in NEED just like they were, for more than trite phrases and platitudes. My son was in need. He was at risk.
When the transport came for him and they explained that I could not come with him, but would have to walk across to the hospital for sick kids and register him there and then I would be brought to the NICU and they would explain things further, I had a big girl moment. I Pressed my lips together and nodded. When they rolled him away in that huge enclosed crib; I had a little girl moment and broke down in the hallway. Sobbing out the fear, the disillusionment, the pride. This was our second day together, my beautiful perfect son and I, and already he was teaching me more about myself than I think I’d learned in the 41 years previous. When night finally fell on our second day, I was not holding him snug beside me, I was not sleeping soundly beside his precious and perfect form. I was standing at a window staring at his shape now obscured by tubes, monitors,lights and so many nurses. And that first beautiful night felt like it had happened a million lifetimes ago. I thought this was as bad as it could get. I can almost feel the sad grins of other knowing parents as I type that. The next weeks would educate me better than any pamphlet could. How glad I would be that my Saviour walks on water, because I was in the deep end now.