It’s amazing the evolution I have undergone in raising this little guy. I’ve heard it said, “Without resistance there is no growth,” and I believe whoever came up with that was on to something.
I used to puff out my chest and declare, I can handle change, and I’m adaptable. But when I was shoved, unwillingly, into the world of special needs, I can only describe it as being thrown in a deep dark hole where there is no footing. I was free-falling, so to speak, and I didn’t like it. Not one bit.
If someone had appeared with a magic crystal ball at that moment, to reveal, in vibrant colors, how life would look into the future, I would have grabbed it with greedy hands and peered in closely.
Now, no way. I’d knock that thing right on the floor and enjoy watching it shatter into a million little pieces.
My evolution in life is because of this walk in the dark. Of finding my own footing and not knowing what the future would hold. Every success brings a deeper joy when you discover it on your own around the next corner, and every failure delivers a valuable learning experience when you have to march forward on faith alone.
That first year, if I were to sum it up, is moment-to-moment living. My world existed in the 4 walls I was within. The 4 hospital walls of receiving Wil’s diagnosis. The 4 walls of the geneticist’s office, in the dark, staring at projections of squiggly chromosomes on the wall while the doctor sat, professional and crossed legged, speaking in clean, crisp scientific terms about Trisomy 21, while inside I felt like my whole life was falling apart. The bright 4 walls of our walk-out basement, bent-kneed on the soft beige carpeted floor (every pair of jeans were worn through the knees that year) watching the physical therapist expertly maneuver Wil’s limbs, kindly and calmly explaining what muscles she was working and why. The twins darting around, interested in all of the therapist’s toys. I don’t think have ever lived in the present more than I did in that first year.
It’s not that I never looked into the future. I remember asking the physical therapist when Wil would walk. She said he would walk, but she couldn’t tell me when. And, I’ll never forget, she said that his learning skills, such as reading, were the most important. I had those vague faraway dreams for Wil of getting his high school diploma, taking college courses, driving and meeting the love of his life. But, the outlines of those dreams were fuzzy, so far away. Wil developing the oral skills and strength to blow a bubble would have been enough to blow my mind at that point.
The ironic piece to this is, the smaller my world shrank, the more open my mind became. I’d focus with Wil on one singular task for days, weeks, months. Just bring that forefinger to your thumb, baby, yes, you can do it. If this one task was achieved, he could move to the next and the next. But, not until we reached this one milestone. Would it happen, when would it happen? Those thoughts ran through my mind over and over. His therapists and I would be on high alert for just the teeniest improvement. And, when there was a microscopic change, you better believe we all saw it like it was blown up a thousand times and would have done anything to break out in cartwheels across the playground.
As time marched on, and those microscopic achievements cleared the way for macro achievements such as walking and talking, my mind began adjusting its focus. These little pieces of life, these little moments that are hardly given attention, were put under life’s giant magnifying glass. These teeny, tiny moments that I would have previously unknowingly trampled upon, became beautiful, magnified, clear moments of my life.
That crystal ball I was so greedy to own would have stolen this magnified joy from me. I would never have recognized, nor appreciated, all of the parts and pieces that have been poured into every one of Wil’s seemingly typical milestones. Even now, years later, when I watch Wil run, jump, play, respond to my questions, and laugh at his own made up knock-knock jokes, I still feel the urge to break out in cartwheels across the yard. (I would look pitiful, but still).
We’ve now grown beyond that moment-to-moment living within 4 walls time, and expanded into the day-to-day. Though the future is still fuzzy, the outlines are etching themselves in a bit clearer.
When Wil started Kindergarten, I wanted him to be in an all-inclusive classroom as much as possible. The school accommodated that, as Wil is very social and learns heavily from his environment, and as such, his peers learn and grow in being with Wil. Yet, over time, we found that in some areas, such as math, Wil learns best in a one-on-one environment in the resource room. We made adjustments, and still do to this day, and I’m sure will continue to do so as he grows. It is a day-by-day learning experience.
Wil is going to try the school’s typical soccer team. Wil has been on an adapted soccer team, and does well, and we’ll continue with that program. Still, I’d also like to see him enjoy some sports with his peers. 9 years ago, I’d declare, “Wil is going to be on a typical sports team!” But, now, having lived and grown with Wil 9 years, I say, “Let’s give this a try and take it day-by-day.”
Wil is a smart kid, but he does have his delays and his own particular behaviors. Some are attributed to Down syndrome, and some are attributed to being a 9 year old boy. As such, some typical activities work for Wil and for his peers. While, in other areas, it’s best for Wil to be in an adapted sport. Like all of us, Wil is his own individual, and we learn what and where experiences are best for him by trying, and taking it day-by-day.
I’m not sure what will come after this day-by-day stage, or how I will sum it all up. I’ll have to live through it before I can tell you.
I will keep you posted, I promise.