Author: Christie Taylor

Running makes one promise, and that is the promise I so desperately needed. If you put in the effort, the time, the heart, you will make it. Running never promises it will be pretty getting there, and I desperately needed that, too.

When life got rough, I had this immediate need to make it pretty, to dress it up and smooth it out. That worked well for me over the years. There was no reason to change it, much less even contemplate that I was doing it.

I’m a supporter by nature (or nurture, or possibly a mix of both). Anyway, I just did what worked, like most of us do. Then, suddenly, I found my way of supporting wasn’t working anymore. My way of smoothing things out was actually creating upheaval in its wake. And, when I started to look a little more deeply at my behavior, if I really wanted to get truthful with myself, I edging on the side of enabling.

My previous path, before I found myself bewilderingly staring at a new one, was nicely laid out for the most part. Go to school, get decent grades, go to college, get decent grades again, get a job, buy a house, meet a man, get married, have kids, encourage them to get decent grades, send them off to college, retire with husband to a warm place with visits from grandkids. Nothing is quite that straightforward and uncomplicated, there are lots of in-betweens, but pretty much, that’s how it went and was looking like it would continue to go.

That is, until, I find myself unexpectedly raising a child with special needs, sitting at a dinner table, where friends are all talking about retirement with their spouses in tropical places, or travel to exotic countries, or settling into a quiet condo on a lake up north, their eyes glazed over with faraway thoughts swirling in their minds while my current reality comes flying at me in full speed. All of those questions that sit quietly in the back of my mind come dashing to the forefront, fighting to be first in line. What will life look like when my son is an adult? What will his skills be? Will we need to move to find him a job? Will he live with us or in a group home? Will we need to move to find him a suitable group home? Will I need to start my own group home? What will happen when we die? Where will his sisters be? Will they live close enough to care for him? How would he feel to be uprooted and have to move so late in life if his sisters do not live nearby?

These questions were never even part of my previous landscape, but they are now. Those rough edges of life aren’t so easily smoothed over and dressed up as they once were. The questions are too many and too unanswerable. Oh, there are plenty of people who have lots of answers for me, but frankly, that pisses me off. And, you know why? Because not one of them is on this same path. They watch, and from the snapshot of time they observe, have all sorts of ideas and solutions. And, funny how they are the same people who say accusatorily, “You have changed!”

How can I not have? How can I walk this path and not have been changed by my new surroundings? I’ll tell you what the old me did at the start of this path. The old me tried to make everything smooth and perfect. The old me searched out therapies and support groups and did everything “right” when I first landed unexpectedly on this path. The old me did everything so right that my husband was still left standing looking around bewildered at the starting line wondering what the hell had just happened. The old me tried so hard to make this unexpected new turn in our lives as easy as possible for her husband that was struggling mightily with this. The old me cleared the dust and took care of everything that had to do with Wil. The old me was doing what she thought was supportive, when in reality, was enabling. The old me made it as comfortable for him as possible at the starting line so he could walk forward at his own pace while I forced myself forward. The old me thought that was the right thing to do. And, like all of us, we only do the best we know how.

What woke me up, what shook me up into change, was finding myself in a completely different place than my husband. I wanted to share so many of my experiences with Wil. The advances he made after so much trial and error. Of how it felt to be stuck for so long on one little detail, and the thrill when he mastered that one little but huge piece. But, I didn’t let him in on that when it was happening because it hurt too much. It hurt to have this child struggle so much on a milestone typical kids breeze right on by that we parents barely take notice. A milestone that held, for Wil, so many unanswered questions. How do we get there? Will we get there? What will work for him? If it doesn’t, what does that mean? I had spent months on this one little piece with his therapists, and when one day the light bulb went off inside of Wil, I felt like the most spectacular fireworks had just been released. Yet, because I dressed up and smoothed over the hurt of achieving this milestone for my husband, we could not rejoice fully in the joy of it together.

Having taken the messy, difficult steps, I was finally seeing the bright scenery that had once seemed so closed off to us. It wasn’t the scenery we had anticipated, there were still so many unanswered questions around us, yet the landscape still held so much beauty. I didn’t have to dress it up, smooth it out. The colors were actually more vivid for the trials. But, only I could see them because I had taken the messy steps. He couldn’t share that with me. Yes, he needed to take his very own steps of his own will, but I had rushed so far forward trying to make things right for Wil, and easy on my husband, always conscious to give him space, that we simply couldn’t relate in all things “Wil.”

We still related deeply with our twin daughters, with our work, with our extended families. Yet, those were all familiar pieces from our old familiar path we knew so well. The Path to Acceptance, well, we were still traversing very unfamiliar territory at very different paces.

When I finally allowed life to get messy right before both of our eyes is when the real changes started to happen between us. It got messy, yes very messy, but we were finally in it together, walking through it, together.

There are no judgements on this road; there are no shoulds or woulds or coulds. There are no accusations of having “changed” or questions why. There is only FAITH. FAITH in the process, FAITH in knowing that you will make it to that end without ever knowing how the hell you are going to get there.

In this FAITH, there are lots of stumbles and missteps. I have learned to trust those on the same path of the hurts and pains in those missteps. To ask for their help when I need it. To find comfort in their knowing laughs and their experienced tears. To live in those unanswered questions together. I also have learned to allow those who judge to pass on by and carry on. I don’t have to be perfect in this journey. I don’t have to be the ultimate supporter. I am allowed to make mistakes, to not know the answers, to fail forward, and to shake off judgements at me that I have changed and their preconceived thoughts or why that is. I can do that because it was not so long ago that I, too, was very unfamiliar with this path, and have made many judgements of my own by not knowing. Yet, I know better now, so I do better.

If I have been put on this earth for anything, it would be to share my FAITH. FAITH is found in the process, in all the messy, imperfect bits and pieces of it. FAITH in our circumstances, FAITH in the path you are on, FAITH in getting through the really messy places amidst the judging eyes of others, FAITH that there are those out there to help you if you have the courage to ask for their help, FAITH in the multitude of unanswered questions, and FAITH in your own ability to make it through triumphant at the end, dirt caked under your feet.

I watch Wil, and the way he entertains himself. He sings to every song he hears, he stands up and dances to every theme song of his favorite show, and invites me to dance with him.

He dances full on, without abandon. The thought of looking silly does not even cross his mind. In fact, if it does, the sillier the better!

Wil doesn’t wait for a moment to happen to him. He doesn’t know he’s supposed to. He creates and goes after his own dreams right then and there on the spot.

He gets frustrated like all of us, yes. He spent most of kindergarten crawling under the table to get out of doing his lesson.

But, he doesn’t hold on to that. When he was ready to read, he read, and he reads with gusto! He laughs and adds sound effects to his books.

He creates a moment in every moment.

I’ve taken that lesson from him, and though I’m not as skilled as he is, I’m learning.

Every day, I take moments to be mindful to create and appreciate. I take moments to be mindful of what I want from this life. To be mindful of the little pieces that bring me joy; the comfort in my husband’s embrace, the brightness and innocence of Katherine’s smile, the way Elizabeth is always sure to share an extra long hug and “I love you” before bed, and the giggle that takes over Wil’s whole body and radiates so I find myself giggling hysterically with him and not even knowing why. It is these moments that are created that give deeper meaning to life.

Some days, I want to crawl under a table and hide, and I allow myself that, too. But, when I’m ready, I come out, and dance and sing, and try again. And, I find that strength to emerge by simply enjoying a moment fully for that moment.

Today is another day to create, to be, to enjoy. Today is another day to grab life by the hands, create the moment, dance with it, and giggle with it, and giggle so hard that the vibration carries through life, and life shares that moment fully with you.

I remember a time, when Wil was just transitioning into Kindergarten, and I expressed to Wil’s teacher consultant how I missed knowing what Wil was doing all day, with his therapies, and in class, as I had known when he was in preschool. She created a progress report that Wil’s paraprofessional could fill out every day and send home with him.

I also remember how Wil’s kindergarten paraprofessional and I would sit on the couch in the school’s lobby and go over his day each morning. All the hand-holding she did for me, and for Wil that first year in the “big leagues” at elementary school.

And, now, how Wil is starting to let go of that hand of his own choice. How he insists that he walk around to line at the start of the school day by himself, how he walks down the hall to the bathroom by himself, how he knows his schedule by heart, and walks off to occupational therapy, speech therapy, the library, with his paraprofessional still there, but he leads the way.

He’s growing up, my little boy. It was not so long ago, when he was only months old, and I was working with him doing leg exercises or dangled toys above him to bring his two hands together across his midline. The tireless days his occupational therapist and speech therapist worked on his pinscher grasp, and finally the excitement of success when he picked up his first Cheerio.

The milestones that came naturally to the twins, some a little early, some a little late, some right on time, found an indeterminate pause button with Wil. When will he get there? Will he get there? Will he ever ever get there?

Multiple halts for one start. The world shrinks down to a single Cheerio and all of the techniques determinately pursued to have two adorably stubby fingers successfully grasp it.

The patience, the diligence, the waiting, the wishing, the wanting, the please, please, please do this. The full focus on that one little, but huge, link in the chain.

Then, the miracle of the meeting of those two stubby fingers. The spark, the wires have connected! Oh, the fireworks they set off! How can I describe such a success as that? Life, somehow, is better, is brighter, is less frivolous, for knowing the joy of two fingers coming together to grasp a tiny oat O.

My life for so many years, was built day after day on those teeny-tiny pieces. The huge little links in the chain. And now…now my boy is growing up. The intricate pieces are still there to be woven together, but he understands more of them now, and is putting them together himself. He chooses his own books and practices reading them with me as the listener. He has his own math sheets where he counts numbers and colors in the correct shapes, with me only as a guide where he gets stuck, easily holding a marker with those still adorably stubby fingers that worked so hard to pick up a Cheerio.

Wil is now a participant in his own success.

This is what we have all worked so hard for, and continue to work for. The wheels are turning and in forward motion. Wil still needs help and guidance, yet he understands so much more of the world around him now. And, so, that allows my view to open wider beyond the teeny tiny pieces.

I would never have chosen this journey with Down syndrome on my own. It would have scared me too much. And, I know, Down syndrome scares a lot of people. Yes, Down syndrome carries challenges, many of them. But, I think, the scary part is looking at it too broadly, or at least I did at first.

Like anything, we need a big grand vision to work toward, but life really comes down to those teeny tiny pieces. Those little huge links in the chain. Some days are hard, they are really, really hard, and I wonder will we ever get there? But, then, I remember those two adorable stubby fingers, and how painstakingly long and tirelessly we worked to get them to come together. How at times, it seemed we never would. Then, that day they did, and how amazing those fireworks were. How powerful the mix of help from others, hope and faith is. The patience, the diligence, the world shrinking down to that one little huge piece, and how sweet the celebration of when it did come together.

I never would have known that life secret without Wil and made the connections with the people I’ve come to know because of Wil. And, that is why I celebrate that teeny tiny extra chromosome for the life gift that it is.

Last night, at a Detroit Red Wings game, our family of 5 spanned a line of seats in the upper deck. Just before the second period began, the girls’ names popped up on the scoreboard:

GAMETIME WITH GLENDENING
KATHERINE & ELIZABETH TAYLOR

“Look girls! There are your names!” I said as I pointed.

“Isn’t that supposed to have Wil’s name?” Elizabeth asked me.

“Yes, but you girls deserve to have your name in lights, too.” I turned and gave her a big squeeze.

Red Wings players each choose a cause to participate in, and Luke Glendening, #41, is involved with our Down Syndrome Support Team and the Down Syndrome Guild. He is a local man, from Grand Rapids, was a walk-on for the University of Michigan hockey team, and now is in the NHL. Clearly a hard worker, he is very genuine person, and great with our kids. In the program, Gametime with Glendening, Luke hosts a different DSST or DSG family at each home game, and there is typically a meet-and-greet with Luke following the game. Last night was our family’s turn.

For the meet-and-greet, a Red Wings representative had asked for the names of Wil’s sisters as they would each receive personalized autographed photos. Apparently, the representative sent Wil’s sisters’ names to the teleprompter.

I wasn’t disappointed by this name switch. In fact, I was quite happy about it. It’s not always easy being a sibling of a child with special needs.

When Wil was first born, we made trips to the pediatrician’s office every single week, not to mention visits to Mott Children’s Hospital to visit a cardiologist, endocrinologist, ophthalmologist and ENT. The girls, of course, made the trips, too. Then, there were Wil’s therapies. Speech therapists, occupational therapists, and physical therapists came to our home. We would all sit around Wil, and the therapists would move Wil’s limbs, show me feeding techniques and other movements to help with his low muscle tone. The therapists were very skilled and conscientious of including the girls, but the focus of these therapies was clearly on Wil, as it needed to be.

I learned quickly how to incorporate Wil’s therapy into play, and the girls very much enjoyed helping him. They would dangle toys above Wil encouraging him to reach his hands together to cross his mid-line, place cheerios on his food tray to encourage a pincher grasp, help him blow bubbles, and as he began to walk, we would count his steps up the stairs as we followed slowly behind him.
With Wil, the progress is very much like those first steps up the stairs. Slow moving climbs forward followed by many stand stills. Nothing ever moves quickly with Wil. All while the girls were at the age where kids don’t walk, they run, from one place to another.

As Wil grew older, but his speech did not, some behaviors developed. If Wil felt the world was moving too fast, and he didn’t have capability or understanding to tell us to slow down, or express his emotions, he would plop down on the floor in the middle of very public places, or flee out the door to the outside.

One day I made a trip to the post office with Elizabeth and Wil. As we started to get out of the car, Wil suddenly decided, in the middle of the parking lot, that he was not going in, and plopped himself right down. Immediately, Elizabeth bent down, and sweet talked him right back up, and they were holding hands walking into the post office. We made our way safely inside, and stood in line. For about 5 seconds. Wil constantly tried to escape. Fortunately, a kind woman in front of us smiled, understanding the situation, and allowed us to go in front of her. Once we were finally back in the car, and Wil was buckled in, Elizabeth and I both laughed and sighed a huge sigh of relief.

“I guess I know one way to get ahead in line now!” She said.

At the grocery store, when Wil was younger, he would decide on a whim that he was too tired to go on, and sprawl, spread eagle, in the middle of the aisle. The girls and I would prompt him up, and move on. As he’s gotten older, he does not do this like he used to, but just the other day, I had a full cart and was pushing it out the door, and Wil decided, right in front of the automatic door, that he needed a rest. The girls having much previous experience with this, went right to him and got him up without my having to say a word.

In an earlier blog, I wrote about some of these behaviors, and a reader commented that if the girls “stopped in their priorities” and sat down with Wil, and played what Wil wanted to play, then he would not exhibit some of these behaviors. “Simple” the reader said.

It may seem simple, but that is because the complicated is entwined in the simple. The complicated is in “simple” trips to the grocery store or post office. The complicated is in “simple” walks up and down the stairs. The complicated is in “simply” reading a book with their brother. Over the years, the girls have become quite skilled at understanding innately how complicated a simple day can be. They come face to face with their own priorities in slowing down for their brother in the simplest of ways.

Last night at the game, shortly after we saw the girls’ names in lights, we decided to head down to the lobby for some food. We slowly double-stepped our way down the 18 rows of steps with Wil, and on our return we all balanced boxes, as I held Wil’s hand, and slowly double stepped our way back up those 18 rows. The simple is never simple with Wil. This is our normal. This is our every day. We do not stop in our priorities for Wil, we flow. It may be a slow flow, but it is our flow, and even on our hardest days, I wouldn’t wish it any other way.

There were no mistakes made on that scoreboard last night. The names in lights were just as they should be.

“Wil has made some big advances this year. Though his stubbornness is advancing, too!” I said with a laugh.

“Well, you do know that it’s only going to happen more as he gets older?” She said flatly across the table.

I felt the weight of that question in this otherwise casual conversation sink to the pit of my stomach.

Why would she even ask that? Why would I not know something like that? Do I not live with my child every day? Am I not greatly involved in a support group where I have much experience and conversation about our maturing kids? Does my optimism surrounding Wil’s Down syndrome possibly lead her to believe I do not take the challenges of his future seriously, or that I haven’t given thought to Wil’s future challenges?

Optimism, in fact, is my strength in working through Wil’s challenges.

You see, when Wil was a baby, and I was just figuring this whole thing out, I was alone in a lot of it emotionally. My husband was struggling with the diagnosis, and though I was too, I was the stay-at-home mom. I was with our new baby all day and up every 3 hours for his nightly feedings. I couldn’t live in this hurt surrounding my beautiful baby. If I was only hurting for me, I’m not sure how I would have moved forward. But, I was hurting for Wil. I was hurting for what future he may have. I had to find the bright spots. It was not just a wish, it was a deep down absolute primitive need to find that light, in any shape or form.

There were meetings for people who had children with special needs I sought out and attended. In some, parents talked of all of their problems, but for whatever reason, they were content to stay deep in that heaviness. I’m sure there was great comfort and need to talk of that heaviness, but there seemed to be no desire to find any light. It wasn’t that I didn’t feel pain for these individuals and their struggles, but I felt so heavy inside I couldn’t stay there. I quit these meetings and moved on.

In my search, two very bright lights I discovered were the Down Syndrome Support Team, and the book they gave me called Common Threads. Common Threads is a book of stories. Stories from people who have had close and direct experiences with individuals with Down syndrome. They are stories from not only parents, but aunts, uncles, babysitters, friends, and so on. Every single story carries the light of optimism. And, what I find remarkable is, the light does not mask the challenges of Down syndrome. The challenges are shared right there in black and white. Yet, the bright gifts are uncovered not despite the challenges, but because of them.

And, the people of the Down Syndrome Support Team (DSST) are the same way. I have met parents who have had very serious struggles. They have children who have Leukemia, or have undergone open heart surgeries at only months of age, and children who have passed on to earn their angel wings. Though these parents have been through very profound experiences, they are the same people who share the most light. They are the parents who are quick with a hug, to listen, to share. Not despite their challenges, but because of them.

After one DSST Mom’s night out, Matt said, “So you probably spend your whole time talking about Down syndrome.” I laughed, and said, “You know what? We do. And it’s the best!” At those tables, we all do talk about our challenges. The years of potty training with poop on the wall, the climbing under the table at school, the running off, and all kinds of tricks of the trade that have worked one day, and not the next. We also talk of the quick turn arounds in attitude our kids have, the hugs that melt your heart, the first words, the first steps, the compassionate friends, the list goes on. Sitting around the table at a DSST Mom’s night, I find myself laughing to tears more than crying. Our joys are heightened for the challenges. It is amongst these women that I have truly discovered the meaning behind the quote, “I never promised it would be easy, only that it would be worth it.”

Over the years, I have received many heavy questions, and I have also received much unsolicited advice. I could get angry, and sometimes I do. But, mostly, they just don’t get it. It is my job to advocate, but sometimes, I find explaining the strength of this joy difficult. It is because I have found them in bits in pieces…I have found them in hugs and impromptu conversations, in a short story, in a laugh at a Mom’s night. It’s hard to wrap all that up in one pretty package.

Maybe my optimism does make it seem as if I don’t take this whole Ds thing seriously. But, it truly is my strength. And, so, right or wrong, I answered with a big smile, “Oh, yes, I do. And, it will be ok.”