I never would have guessed that I would be chosen to be a parent to a daughter with “special needs.”
It’s not that I thought somehow that it could never happen. Or wouldn’t happen. Or shouldn’t happen.
I guess it’s just that I never gave it much thought, actually.
There were a lot of things I was concerned about as I became a parent. The irony that we need to take tests for all sorts of things, like driving a car, earning a degree, pretty much anything, actually … and yet there is no test, no real preparation for this most life-changing experience … never ceases to amaze me. I guess the real tests come day in and day out as you live and learn and grow together.
So, yes, there were things I was concerned about. Health, naturally. And then I read an article about the rise of life-threatening allergies. That pretty much freaked me out for a little while. And what it would be like to transition to a stay-at-home parenting role. Would I know what to do when my dear baby sprouted her first fever? Oh. And sleep. I worried a fair bit about that too :).
But “special needs?” Not so much. Well … there was that time when the piano tuner came. I was days away from delivering our first baby, a girl we named Mikayla. This piano man was a … unique individual … who told me not to worry if my child had autism, for it is a gift; who claimed to be able to accurately guess the sex of an unborn child and predicted with such vim and vigor as he walked out the door that I nearly believed him myself … “you shall have son, and his name will be Nathaniel!”
I stood at the door and blinked as it closed behind him. We had just settled on Nathaniel as a possible name. And one of the first things I said when Mikayla was born was, “well….. the piano tuner was wrong….”
Getting back to “special needs,” I just wasn’t that worried about it. And when our midwife came to do a routine, post-natal check on Kezia, who was only a day or two old at the time, I wasn’t terribly concerned when she said, “Her head is measuring too small. You will need to see a pediatrician,” I was so tired, but so high on adrenaline and happiness and holding my baby that I wasn’t overly concerned.
But life came to a screeching stand-still ten days later. We sat in a pediatrician office, and heard words like “microcephaly” (literal translation – small head) and MRI and X-rays and a high likelihood of mental and/or physical disabilities. The room got very, very quiet. Here was this perfectly formed, beautiful baby. I could not hold her enough. And here were these hard words, and possibly difficult realities in store for her and my head and heart had a very hard time grasping it. In a state of shock we walked out of the office, somehow finding the space to breathe and function. It wasn’t until we got home and googled microcephaly that I started to really freak out. In most cases, microcephaly is only one symptom of a much more complicated condition.
Many tests, doctors and appointments, several phone calls, and a couple of years later, we settled on “primary microcephaly” as a working diagnosis. What this means is that, as far as we are aware, there is no underlying reason (such as cerebral palsy) for Kezia’s smaller-developed brain (which showed itself in a smaller head circumference). The presumption is that either a) her brain just developed small (but fully formed as determined through an MRI scan) or b) she has a genetic condition. Prognosis is life-long learning disabilities. There is a wide range in severity. Like with every person, each situation is unique. She is literally “one in a million” as most babies born with “microcephaly” have multiple health and developmental considerations. Yes, Kezia is affected by her learning condition, but is otherwise healthy. We are thankful.
These were hard days, folks. Many tears, deep anxiety and all with very little sleep. Our sweet babe was adorable, happy, content and quickly integrated in our family — but good sleeper she was not! Ohhhhh that was such a long road! I still twitch at the thought.
Deep fatigue + hormones + medical and developmental concerns = prime opportunity for anxiety. More about that journey another day.
It has been almost eight years since this journey began. The learning curve has been crazy but has also levelled off in many ways. Each stage presents its unique blessings and challenges. We have navigated those preschool years, many many therapists and transitioned to funded schooling in a very supportive school and classroom (public school). We have yet to find our way through puberty (don’t even get me started about that!) Somehow, the LORD provides, as He has right from the very beginning. We’ll find our way through all that too.
Sitting in that doctor office for the very first time, it was a steamin’ hot July day. In the cool, air-conditioned space of the waiting room (which was full of anxious parents and kids who didn’t want to be there) these wandering minstrels were playing guitar and singing. It was total therapy. Years later, I discovered the song they were singing….
Jack Johnson’s “We’re Better Together….”
Eight years. Many adventures. Many memories. Many challenges.
Wouldn’t trade it for anything!