Celebrating The Extra In October
Today marks the beginning of Down Syndrome Awareness Month, so it only seems fitting that in honor of Hayden, I should try to recount the very first moment that I became “aware” of Down syndrome in my life. Be patient, it’s a wild ride, but I remember it vividly.
As I was driving one summer day in 1998, I turned a corner and a little thought bubble crossed the top of my brain that read, “what about Down syndrome?” and the implication of that little thought was “what about a baby with Down syndrome?” I shrugged and said to myself, “Hmmm, Down syndrome, that doesn’t sound like a big deal”, and a I let the thought go. (A little excursion off the beaten path here to explain that my husband and I had been in our county’s foster-to-adopt program for nearly a year and had already had a sibling set temporarily placed with us, with the youngest, a baby, still with us) Fast forward a few weeks: life had gone full-speed ahead and not at all in the direction we had wanted, but I”ll get to that part in a minute. I was on the phone congratulating a friend whose baby’s adoption had just been finalized that day, and he told me that that as they were leaving the courthouse that afternoon, their DSS case worker told them about a baby who had just been born, who needed to be placed as soon as possible and that this baby, a girl he thought, had Down syndrome. Since that thought bubble appeared in mind, we lost our second baby, just a week before, and had arrived back in town few hours earlier from an out of town hike-and-grieve-at-timberline-camping-trip. I didn’t mention anything about this new baby to Jeff that night, as we were both emotionally and physically exhausted and VERY raw, but called our caseworker the next day to see if she knew anything about this baby girl. She said she didn’t, but she’d do some digging and get back to me. Within minutes she called back and said the baby was a boy, still at the hospital, the mom had decided to relinquish the baby and that so far there were no prospective foster-to-adopt families. I called Jeff on his lunch hour, gave him the sketchy details and by 3:30 were were in the hospital nursery and I was feeding a precious hours-old baby boy a bottle. It took him longer to drink his bottle than for me to fall in love.
We had SO many questions; Why was his mother NOT taking him home from the hospital? Was she SURE she couldn’t raise him? Could we actually take him home without fear of the mom changing her mind and us suffering another horrific loss? Were we ready for even the slightest possibility that could happen? Would any social worker in their right mind actually GIVE us a baby a) so soon after losing our first two children and b) would they actually place a baby who had a disability (and who was coming home on oxygen, no less) with US?? We barely managed to keep ourselves afloat in life, could we care for a baby with “special needs”? And these weren’t the only questions. We wanted to know things like, what exactly was Down syndrome and what did it mean for his future? I mean, what do people with Down syndrome actually DO with their lives? Do they go to school? Do they read, write and participate in all of life’s activities like boy scouts, soccer, baseball, climbing on monkey bars and annoying their sisters and brothers? Was he going to have a “normal” life? Fortunately for our caseworkers and the on-call pediatrician covering the nursery that week, we didn’t want all those answers right away, just by the time the baby was going to be discharged from the hospital, which turned out to be seven days.
Within those seven days of going back and forth from the hospital (I spent all day everyday in the nursery with him, holding him, talking to him, reading to him and feeding him), the next biggest question we had was “What would we name him?” His birth mom had given him a name, Jacob, and that was fine, but we wanted to give him something special from us. Enter the next thought-bubble: This one happened as Jeff and I were walking across the hospital parking lot getting ready to see this baby again, probably only a day after seeing him for the first time. I said, “Hayden!” and Jeff said, “Uh, my name’s Jeff, not Hayden” “NO DOOFUS!! for the baby!!! Let’s name him Hayden!”, to which Jeff said, “Oh, the famous football coach from the University of Iowa-sounds good!”. “Ya, that’s it honey, I want to name my baby boy after a football coach. Uh, NO….it’s just a name that popped into my head, what do you think?”, I asked. He thought for a few seconds and then said, “Sounds good to me”, and the deal was done. Hayden had a name. In the meantime, word had spread among friends and family in our fare town that we were getting a new baby. A special baby. A baby that might need some extra care.
This story wouldn’t be complete if I didn’t share a conversation I had with a complete stranger on Wednesday evening of that week (the day after seeing Hayden for the first time), because that’s when I actually became”aware” of what Down syndrome was and what it wasn’t. I remembered working with a guy at the health food store who told me that his mom helped families in our town whose babies are born with disabilities find the services and therapies they need (which was a big news flash to my naive mind: “there are little kids with disabilities? hmmm, who knew? I thought). Turns out this guy’s older brother had this “Down syndrome” thing, so I found his mom’s number in the phone book (if you have to take a minute to scratch your head to remember what a phone book was, that’s okay, this was “back in the day”, WAY back in 1998) and she generously spent the next hour and a half “schooling me” on all things disability as it related to having a baby with Down syndrome. She shared with me with me how kids with disabilities can have VERY rich and very “normal” lives, compared to when her son was a baby. She explained how health care, for one thing, had come so far and that most children with Down syndrome are no longer sickly and frail. She told me how Hayden would play with other kids his age, he would go to school with his neighborhood peers, he would be able play t-ball if he wanted, and now days he could join Cub Scouts, and that “now days” kids with disabilities were being included in all aspects of what we call “normal” life. It was a conversation of hope and light and it was just what I need to hear to push forward.
When it was time to come home the next Sunday, we came home with was a brand new shiny baby boy, sporting a dashing cannula, one oxygen tank, one apnea meter (when we left the hospital I was in a cold-sweat over this whole “apnea” thing. I had NO idea what “apnea” was or if it was contagious…..were the dogs going to catch it?, ’cause that would be bad, I thought), and enough oxygen tubing to go from our house to the moon three times, and a few more pressing questions. The oxygen dude was at our house before we made the 14 minute trek home from the hospital. Completely convinced that I was the LAST PERSON ON EARTH who should be trusted with ANY kind of medical equipment to be used on a real live human baby, I offered (okay, I begged) the oxygen dude to stay in our spare bedroom where I promised him he would be comfortable for as long as this baby would need all that stuff (and considering we lived nearly a mile high in Southern Colorado, who knew how long that would be, but I was hoping we’d be free from it by the time he turned six). He was saner than I was, so he thought I was joking, and he casually jogged to his oxygen-dude van. “No really, come back here!! What do I do when that thingy beeps?? How do I know to change out the tanks?” And poof, he was gone. Fortunately though, as the oxygen dude was burning rubber away from our house, in walked the home health care nurse that would ease us through the transition of bringing-home-a-baby-on-oxygen. And she was great. I felt like as long as she was making her daily visits to check his weight, his temperature, and O2 stats (that’s medical mom lingo for oxygen stats-how much oxygen is his body saturating?…80%, 90%, 99%? how much O2 is he getting without the giant green tank?) the chances were slim that I was going to do something “wrong” with this BABY WHO HAD SPECIAL NEEDS (I still had NO clue what that actually meant for our everyday lives). Before the nice nurse lady was out the door after her first visit, Hayden and I were nestled in bed (with our ever-vigilant-Westies snoring at the corners), for our first nap together. The thought bubble over my head read, “aaah”. Most of the questions we had at the beginning of the week that seemed so urgent, remained unanswered, but for now, we were a Mom and Dad and baby boy……and enough oxygen tubing to go to the moon and back.
|Hayden on his bike at the beach, June 11|
|“What can I say? It’s cool to be me!”|
|Watching his favorite sport (baseball) with Dad|
|Just fiddlin’ around, Aug. 11|
- Posted in: Down Syndrome Homeschooling Special Needs