Author: Christie Taylor

There is a mother I recently met, I’ll call her Lisa. Her daughter, Zoe, is bound to a wheelchair. Zoe has very little use of her arms, the muscles so tight they are pinned up against her chest, her hands curled into little balls. Zoe’s legs, which are of little use to her, are covered in a blanket. Lisa is the daily operator of Zoe’s wheelchair. Yet, I have very rarely seen Lisa walk behind Zoe’s wheelchair.

She runs.

As Lisa takes flight, ground flying under her feet, exuberant with energy, Zoe’s eyes tilt toward the sky, hair blows back from her forehead, and laughter radiates through her vocal chords. Freedom.

I believe positivity, in it’s essence, is often misunderstood as a pretend place where life is all smiles. But after meeting people like Lisa and Zoe, my mind is opening to it’s greater complexity.

Life is full of challenges for everyone. And, when you have a child with special needs, the challenges are very apparent. You hear over and again, all of the experiences your child will NOT have. Having a positive outlook is not denying those challenges, or pretending everything is A-ok. Positivity is a focus, a mindset.

Positivity is finding a way.

When Wil was a baby, he was diagnosed with low muscle tone and cognitive delays. Yet, today, Wil runs down the soccer field with his typical peers. He does not run as fast as they do, but he runs faster for them, and they slow down for him. It is a team effort, in the truest essence of the word.

Watching Wil laughing, grass flying under his feet with his teammates, my heart overflowing for him, I think of Zoe, laughing, watching the clouds fly fast above her, her mom’s heart pumping, enjoying the ride as much as she does.

The doctors told Lisa that Zoe would never run, but Lisa found a way.

Positivity is not a pretend place where life is all smiles. Positivity is a mindset. Positivity is where freedom lives.

This post showed up in my “Facebook memory feed” that I wrote on this day last year. The Sesame Street bus is no longer left in the hallway. Time, it goes so fast…

SESAME STREET BUS
Last night, as I put our 9-year-old twin girls to bed, I was enjoying the fact that bedtime talk is always different from daytime talk. Daytime talk with my 9-year-olds is very animated and excited, but when the lights are dimmed, and everyone is sleepy and calm, my girls seem to share stories with me about their day that they wouldn’t normally tell me in the excitement and busyness of the daytime.

After a really nice chat, I kissed them goodnight, and stepped out into the hallway, where my foot almost hit a little Sesame Street bus filled with little Sesame Street characters. My son had left it there when he was playing earlier that day. I looked at it, and realized that there has been quite some time since my foot almost hit a toy like this. At one time, it was simply routine to be dodging toys like landmines strewn about the hallways. Now, I realized, that dodging game of a time was almost gone.

Time is funny like that, it slips away unnoticed, and then we receive a little reminder to wake up and start paying attention.

There was a time, not too long ago, when the twins and their brother, trailing in age less than 2 years behind his sisters, were a whirlwind of activity. I hardly heated up a bottle before they had efficiently dismantled a room, only to move on to new and better things. I was in a constant state of motion, with a white smudge of milk forever on my shoulder, sticky finger prints forever on the bottom half of our patio door, bottles and toddler utensils forever filling our dry rack by the sink.

But, that forever is no longer, even though it felt that way at the time. Looking down at that little Sesame Street school bus, I realize how fast the feeling of forever can go by. Do not get me wrong, I do not want to go back to that time, but I sure do love thinking back on it, seeing where we were, and where we are now. Remembering all the craziness, the wonderfulness, all the mistakes I made, and the good decisions I made, just doing the best I could one day at a time.

And, that is how life goes, one day at a time, one choice at a time, one memory at a time, seeming like it will go on forever, until one day, you are standing in your pajamas in the hallway, staring at a little Sesame Street bus.

Life is creative, Life is crazy, Life is unpredictable, Life is hard, Life is not always how we want it to go, but Life is also really, really good. We darn better find a way to soak it all in, my friends, because one thing is constant, and that is that Life moves on, and all we have as we move with it are the memories we ourselves made in those moments of seeming foreverness.

Today is World Down Syndrome Day! 3-21 representing 3 copies of the 21st chromosome. Every year a video is released celebrating individuals with Down syndrome. Watch, take in the message and celebrate with us! (And, if you love this like I do, have a tissue handy) 💙💛💙💛💙💛💙
#WDSD2016 #DownSyndromeAwareness

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.

“We believe your baby has Down syndrome.”

You’ve just birthed a baby, a beautiful pink crying baby. And, within moments, these are the words filling your brain. The thrill, the adrenaline of birth, the new, fresh excitement is weighed down, heavy, in the pit of your stomach, by that greedy monster of fear. The unknown. It feeds on fear like no other.

Then the statistics. Those cold, hard statistics handed to you in a perfect, crisp folder that immediately begins to wrinkle under the sweat of your hands. Oh, and the faces surrounding you as you lay in your hospital bed. Everyone, the doctors, the nurses, family and friends, look down on you full of concern, sadness and the worst, pity.

Some well-meaning friends offer a half smile and “but he will always be happy.”

Your mind swirls with all of the new doctors you and your baby will soon be visiting; geneticists, endocrinologists, cardiologists, ENTs and ophthalmologists. How fast your mind can go from feeling bright, wide and expansive, to shrinking within the sterile confines of 4 white walls of a hospital room.

Where are the colorful bouncing balloons strung up with pretty ribbons? The flowers? The smiles, the laughter, the blue cigars?

Fast forward 9 years later, we are at Wil’s birthday celebration. It’s in a bowling alley/arcade. He has just bowled a game with 11 of his friends from school. Many of them girls, the girls just love him. Wil and his friends will soon enter the arcade where Wil will swipe his game card and play all the same games as his friends. But, now, they are all about to dig into their chocolate cupcakes. Wil is poised over his cupcake, sucking in a deep breath, ready to blow out the bright flame of the number 9 candle stuck in its center. His friends sit lined down the table, hands raised and waving in cheer.

Even outside the borders of this birthday picture, the story continues to unfold. There stand the mothers of some of these children who have helped pass out pizza and now the cupcakes. They are refilling cups of fruit punch and Sprite. And, most importantly, are raising children who love and support Wil.

According to Wil’s friend, Seeger, who is sitting at that birthday table, Wil spends 5% of his life giving hugs. He’s also quite good with his manners. Seeger wrote Wil a personal friendship note thanking him for “being a good friend and saying pleaes and I hope your day is fun and awsom.”

Yes, those statistics in that heavy folder that was handed to me on Wil’s day of birth are very real and very important. But, what I didn’t know 9 years ago that I do now, is there is always a bigger story outside of the folder, outside of the 4 hospital walls, and outside the border of every picture. No one snapshot can ever tell the whole story.

In March, Wil and I will sit on a panel in front of medical students at Wayne State University. They will want to know my personal story in how to present Ds facts to brand new parents. I will share with them my son’s most important life statistic: That Wil spends 5% of his life giving hugs. Isn’t that just awsom?!

“Wil, it’s a short page, let’s just get through this and you can go blow bubbles.”

Crossed arms.

“Ok, I’ll read it first.” After I’ve read it, “Ok, your turn.”

Stubborn silence.

“Just one word, Wil. Just read the first word.”

Eyes quickly averted from page, crossed arms tighten.

“How about we read this with chocolate?”

Slight glance in my direction………..

What happened to the kid, who just a few short days ago, took his entire stack of reading for the week, sat himself at the kitchen table, and went through each book, happily reading through every page, complete with sound effects and full animation. Without an ounce prodding and completely chocolate-bribery free.

Some days, Wil turns the stubborn dial up to full tilt and not a single one of us can get through, while on others, he is the most eager to learn and good-natured kid in the universe. I try to find a rhyme to his reason, and the only thing I have come up with thus far is this: The world moves fast for Wil. Too fast, sometimes, and he just hits a wall. He needs a meditative moment, a “time-out.”

When I recognize this need, I ask him to go sit quietly in his room and come out when he is ready. He’ll begrudgingly stomp into his room, close the door, and quietly take the time he needs (some days it’s 30 seconds, others its 30 minutes). Somewhere behind that door a miracle happens. He will emerge from his room, the same exact kid who walked in full of stubborn will, and energetically burst out proclaiming, “I ready now!”

And, he truly is. It’s an amazing transformation.

The challenge is, we don’t always have 30 minutes for this transformation when Wil requires 30 minutes. But, sometimes, 30 seconds is enough.

Just last week, as we were about to leave for school, Wil decided the hat he was wearing was not the one he wanted to wear anymore. He wanted a different one, and he couldn’t find it. If you know Wil, you know hats are a serious business to him. He always wears a hat and is very particular about which one he is wearing. And, amazingly, he typically remembers where each and every hat he owns is (he has an extensive collection).

Alas, this was not to be a typical morning for Wil’s hat memory. He could not recall where this particular hat he wanted to wear was. We had 3 minutes to find it or he and his sisters would be late for school. The 3 minutes quickly ticked by and the hat he wanted remained elusive. We left the house with a hat he was less than satisfied with.

Hat dilemmas can easily require 30 minutes, and we only had 3 minutes to work with, which now was gone.

Knowing Wil would refuse to exit the car once we reached his school without a hat he was satisfied with, I grabbed his entire crate of hats and set it next to him in the car to peruse while we made the drive to school. Over the duration of the ride to school, he dug through the crate but not a single hat met with his satisfaction. Fortunately, when we arrived at school, he did exit the car with only a little coaxing from me at the circle drop-off, but he planted his little butt on the concrete sidewalk, and firmly crossed his legs and his arms, as I drove away with a full line-up of cars behind me. I watched in my rearview mirror as the teacher who attends the circle drive walk over and stand next to Wil. I quickly pulled over into the parking lot and texted Wil’s paraprofessional and filled her in on the situation. She is no stranger to Wil’s stubborn streaks having been his paraprofessional since 1^st grade. She assured me she would be right over to meet Mr. Wil and safely walk him into the school.

Apparently Wil had the meditative moment he needed in that short time sitting cross-legged on the sidewalk that I wasn’t able to give him at home, because his para texted me a few minutes later saying Wil was now inside the school happily high-fiving his friends as he sauntered down the hallway. (I sent up a silent prayer for his amazing paraprofessional, teacher and friends).

While Wil’s stubborn trait can be very trying at times, I always believe there is a life lesson in every experience. The way I see it, the learning experience would be this: We all require meditative moments. Every single one of us. Yes, the world may move faster for Wil than it does for us, but we all have those times when we hit a wall. When we need the world to stop. And, it’s typically not socially acceptable for us to plop our adult butts on the sidewalk.

So, we cope the only ways we know how. We may blame, or rage, or go into a depression, or denial, or turn to drugs, or drink to excess, or eat ourselves into oblivion. The world throws hardballs, moves really fast, and can be downright unfair. It stands to reason we need meditative moments, but its hard to stop. Most of us go to those meditative moments begrudgingly, even when, down deep, we need them the most. I wonder, if, just maybe, when we feel the weight of all of the world on our shoulders, we just stop (that is, if someone doesn’t offer us chocolate first). Excuse ourselves to the bathroom, go off to a different room, sit in our car, step out onto the porch, simply close our eyes and breathe, anywhere and anyway we can shut the world out for 30 seconds, 1 minute, 5 minutes, whatever moment we have to stomp out, shut the door on the world, and plop our butts on the ground cross legged if only in our minds. Allowing all the noise, all the pressures, all the craziness to float away in that moment. It won’t make it go away, but it will allow us to just be. To recharge, renew, and refresh our perspective. To be present in that moment for that moment. And, then, when we are ready, we will open the door and energetically burst out proclaiming, “I READY NOW!”

And, truly, we will be. It’s an amazing transformation.

We may need 30 minutes, 30 days, or 300 years even, to get through some of life’s stuff. But sometimes, 30 seconds is enough.