When Jaxson was just a tiny new
baby in the NICU, I used to wonder what life would be like where we are
now. I would sit in front of his
incubator with both my hands pushed through the holes in it’s side tracing over
his tiny “abnormal” features, my head spinning with what-if’s. I would try to
picture his first steps, or the first time he called me mommy. I tried to
imagine him playing with friends, or standing on a school bus step, new
outfit and backpack, smiling ear to ear before embarking on his very first day
of school. I tried to see him building forts, reading books, riding a bicycle.
I even tried to imagine him as an adult. But I couldn’t see any of this.
At that time, I didn’t know how to
picture a child with Down syndrome, even my own child, doing these things.
Between having been incredibly unfamiliar with Down syndrome, and the huge
binder full of statistics provided to me shortly after his birth, I had no idea what
to picture my son doing. Spontaneous visions of him, unable to walk or talk or care for himself in any way, and myself worn down and
gray haired, struggling to care for him made sporadic appearances. All I could
hear over and over again was his neonatologist saying that he would "suffer mild
to severe mental retardation," and in my tiny bubble of a world at the time,
that seemed synonymous with an inability to function.
Luckily, like most every other
mother (and father) who has walked in these shoes, I have long since realized that
the questions and absurd assumptions I first had when Jaxson entered my world are
now more humorous than they are relative.* The amount of times I have since scowled myself, silently apologized to Jaxson (and the world) for my ignorance,
or smacked my forehead out of embarrassment for my initial thoughts is a number that continues to
climb.
I have watched that tiny person in the NICU flourish. Not just grow, or merely exist, but thrive. Amidst stereotypes and
statistics, I have watched his personality spark and develop into something
fierce and independent. I have watched his determination carry him from one new
thing to the next, and his stubbornness guide him at his own pace as he
acquaints himself with the world around him. I have seen him struggle to learn
things that come easier to others and have heard far too many cries of
frustration as his muscle tone limited what he wanted his body to do. I have
seen him pushed beyond his limit in therapies, or doctor’s offices. I have
watched him endure and conquer so much more than I ever could have imagined
back when I held his tiny hand as a doctor confirmed his extra chromosome.
And he’s only 18 months old.
The future I now see for him is as
bright and fulfilling as it was the moment he entered this world, before his
beautiful almond shaped eyes were noticed and fear crept in. I now imagine him accomplishing so many things in the future, that I often have to remind myself that he
will make his own decisions and excel at what he chooses to love, regardless of
what I hope he loves. I have learned through many battles with him already that
he, and he alone, will decide what he wants, when he will accomplish it, and
whether or not he will continue to do it.
There are many moments within many
days that I spend regretting the grief I felt throughout his first weeks of
life. How I imagined both his future, and mine, coupled with a
what-did-I-ever-do-to-deserve-such-a-life-for-my-child attitude, is something I
wish more than anything I could take back, though it is a part of the journey
that has gotten us to where we are now, and where we will continue to go.
Shortly after Jaxson was born, I
spoke to a geneticist in regards to how I managed to produce a baby that was
given a 1 in 1400 chance of being born to a woman of my age. He told me that
Jaxson was a “fluke,” and that it shouldn’t have happened. At the time, I found
comfort in the word knowing the chances of “it” happening again were incredibly
rare. But now I wonder, if any mother of any child, extra chromosome or not,
were told that her child’s existence was a fluke, shouldn’t she be proud,
grateful even? A fluke is not only an unlikely occurrence, but is also defined
as a stroke of good luck. I feel as
though I should have thanked that doctor, not for the comfort he brought me
then, but for the beautiful way he unintentionally used that word.
When I think about how
statistically close Jaxson was to not existing as I know him now, it brings me
more sadness than I ever felt those few weeks after his birth. What I did to
deserve such a sweet and beautiful fluke, I’ll never know, but I am immensely
grateful for my stroke of good luck, and the perfect tiny soul it has brought
me.
*In no way am I saying that any degree of intellectual disability is humorous, but stating that my complete lack of education in regards to Down syndrome after Jaxson's birth is something I now find comical.
