So people–those of us who advocate for and, generally, have children with special needs–are talking about the “Welcome to Holland” story again. Honestly, I took offense to it the first, second and sixtieth time I read it. It took me six years (that’s now) to come to understand that perspective, though it still offends me a bit, personally. It just does not resonate for me. While Amsterdam International seems to hit closer to the heart of the disappointment some parents of children with special needs might feel when expectations for “typical” are dashed with a diagnosis, it’s just a deeper look at the Holland POV. Still, neither approaches my experience. Though we all share the common experience of pregnancy and imminent parenthood, the similarities stopped there, for me!
We all approach this thing called parenthood — special needs or not — differently. The first Holland story bugged the daylights out of me maybe because, as a later-in-life parent (39 the first time and 42 the second and third) I felt strongly that parenthood was a giant leap of faith that a parent-to-be undertook knowing that there was no way of KNOWING anything at all about what was about to happen. Yes, I knew my life was going to change drastically! Exactly how, though, was unknowable! And so we all leap–in good faith–over and over again, despite the difficulties. I got on that plane with an overnight bag for the hospital… and not a stitch of Rome-appropriate vacation-wear whatsoever. You see, I KNEW that I had absolutely no idea where that plane was headed… except to parenthood, the GREAT UNKNOWN! I boarded with no idea whether I’d find myself in Rome, Holland, England, Paris or any other major or minor city in or outside of the world as I knew it, back then.
I used to believe that all those parents-to-be who entered into this thing called parenthood thinking they knew exactly where they were headed–namely Rome–were silly for believing that they could plan their lives out so nice and neatly. I think that those who are blessed with children with special needs and who thought that way before their children graced their lives, are crestfallen because their expectations for a worry-free life in Italy have been dashed. I, on the other hand, was overjoyed to arrive in Holland or anywhere that included a baby (or two) being handed to me–ALIVE–because of my ill-fated, doctor-tainted expectations!
All my life, I had listened and watched carefully as others near and dear to me deciphered this thing called parenthood over the course of their lives. As such, I knew there were no guarantees. Before I ever entered into parenthood, I’d lost a cousin at the tender age of 16 in a car accident. Another had a breakdown as a young adult and was left mentally disabled. I had close childhood friends, one with a learning disability and one with Cerebral Palsy. A niece has OCD. A friend’s child has autism. Another has 4 toes on one foot. And yet another has Cornelia De Lange syndrome. There’s Cystic Fibrosis, Down syndrome, Cri du Chat syndrome, peanut allergies, asthma and more. There’s a popular saying that “sh*t happens.” And so it does… and not always to someone else’s kid… or to bad people! It happens every day! As such, my thoughts went something like this, “How could I possibly take this giant leap into parenthood thinking, seriously, that it couldn’t happen to me? Of course it could!” Though the odds were against it, the chance was still there. I had already settled it in my head that it would be OK, even if it did happen. Because I’d seen it all turn out OK over and over again in other families. Yes, sometimes it’s harder. And sometimes it’s easier. Sometimes it’s rewarding. Sometimes not. This applies to parenting kids with and without disabilities.
So, historically, my expectations were NOT set on landing in Rome or Holland or anywhere specific except “a new destination that included a baby!” Still, I suppose I thought in the back of my head that the cr*p shoot of life would put the odds slightly in my favor for having a healthy and happy baby (despite the fact that I am Irish and Murphy’s Law often plays out in my life… it always rains when I camp)! However, a very difficult, twin pregnancy managed my expectations in quite the other direction. At eight weeks, my OB revealed the “other” baby–blowing my expectations of being a two-child family! So I reshaped my expectations to a 3-child family. Two weeks later I started to bleed and miscarriage threatened our babies’ lives for the next 10 weeks. My hopes and expectations were precarious at best. At 21 weeks the doctors discovered unusual growth and calcification in the brains of both babies. Diagnoses (read: “educated” guesses) like hydrocephaly and microcephaly as well as deadly viral infections including Toxoplasmosis and CytoMegalo virus were bantered about along with the horrific outcomes–brain-dead, vegetative state, stillborn and worse. Doctor after doctor rushed me through test after test “in time to make the decision to terminate.” Though I refused, my expectations ebbed and waned; Three medical professionals gave me a thread of hope to hang onto for my babies’ survival. I finally decided “whatever will be, will be!” and called off all further testing, telling the medical professionals to be fully prepared at their birth for whatever may (or may not) happen! At 32 weeks, the babies stopped moving. The hospital monitors revealed I was in labor. The C-section was uneventful (as much as a c-section could be) and The Boys were born and brought to the NICU. “Healthy! Breathing on their own! Maintaining their own body temps! Amazing at 32 1/2 weeks gestation!” Then someone said, “There are signs. We’re sending out blood samples. We suspect Down syndrome.” When I tell you IT DIDN’T MATTER, I kid you not! After what I’d been through, Down syndrome didn’t register on my Richter scale! Piece of cake! My babies were alive and healthy and breathing on their own! NONE of the horrible outcomes the doctor’s guessed at had come to fruition. They effectively told me I’d landed in Holland and I was just thrilled to bits to be there with my babies… alive!!!
After six years I’m just as thrilled as I was that day! And after extensive exposure to other families with children with special needs, I understand the concept of Holland and still do not accept that I, or any of us, have been banished to another land or separate existence in the land of tulips and windmills. I am right here in exactly the same place that everyone else who’s had a baby ends up. My feet firmly planted in parenthood with all of its unexpected twists and turns and surprises.
Raised in an inclusionary and fragile world where I have seen that, on any given day, any one of us can cross that bridge to disability with one unfortunate mishap, I am where I’ve always been and pretty much where I figured I’d end up. In a perfectly imperfect–pseudo-inclusive, and workin’ on it–reality!