Matt and I went out on the paddle boards and took Wil in the kayak. Wil was very proficient at paddling backwards, but didn’t quite catch on to paddling forward. Wil found himself deep in the lily pads— he got frustrated, so Matt went back to get a bungee out of the truck, and bungeed his paddle board to the kayak and towed Wil to the sandbar. We played and hung out in the water at the sandbar, then made our way back, Matt towing Wil.
A few more tries, and Wil will have kayaking figured out. But right now, without help, he’s stuck in the weeds.
It’s a great metaphor raising a child with a disability. A lot of people see our lives as being stuck in the weeds, as paddling backwards. But we enjoy the sandbar too, with a little help along the way.
And even better; when Wil learns how to paddle himself to the sandbar, people will wonder why we seem to be the happiest ones there. We will be because it’s not about the sandbar—It’s that we know not to take a single step, or directional paddle, for granted.
Wil was being a full-on teenager and I was being a full-on frustrated parent of a teenager.
I had prepared him for this orthodontist appointment for over a week. And he likes the orthodontist. He likes the orthodontic hygienists. He likes picking out new colored bands for his braces.
The issue was not the orthodontist. The issue is transitioning from one thing to the next. It always has been.
Wil’s appointment was at 11:15. We needed to leave at 10:55 at the very latest. I gave him countdowns all morning. We need to leave in 2 hours. We need to leave in one hour. Almost a half hour, let’s start wrapping up what you are doing. At 10:30 I asked him to get his hat and crocs. He replied “Ok, Mom” without resistance or complaint to my reminders. When it was time to go he dug in his barefooted heels into the grey plush carpet.
“Wil, it’s time to go. I gave you plenty of time to prepare. And you like the orthodontist. You get new colored bands today.”
He was watching a show on his iPad. He was comfortable seated on the plush carpet. Why would he want to leave? He knew I couldn’t do anything about it.
Fortunately I had 2 aces in my back pocket.
“If you don’t go to the orthodontist, that means you won’t be able to go bowling with Kristi Campbell (his paraprofessional we all adore) and you won’t be able to go to Special Olympics softball tonight. You’ll just have to stay home and be bored all day.” (I hung on to the last “L” of all for a few seconds.)
Though Wil was comfortable in his current spot, the thought of being bored is very uncomfortable. Adding in the discomfort of missing bowling with Kristi and softball would be powerful motivators. But even with those 2 added aces, I had to play my cards right. The more I talked, the more noise I’d put in his head. So I shut up and let him mull this over.
While Wil pondered and processed, my internal frustration grew. The clock was ticking. He’d refused a previous orthodontist appointment, and they’d been very understanding and not charged us the missed appointment fee. But I didn’t want to take advantage of that. And most importantly, I didn’t want to send Wil the message that he could miss his appointments. I had a fighting chance to send Wil the message I wanted to. I just needed him to get up off the floor first.
Spontaneity isn’t Wil’s friend, unless it’s on his terms.
When Wil was 13 years old, his refusal to move would have been a full stop sign. There would be no reasoning with him. This world moves fast for all of us, and for Wil even faster. He needs time to feel in control of his situation and emotions as we all do. Rarely do we fully achieve this level of control, but all of us need some semblance of this to move forward.
But Wil is not 13 years old anymore; and age is quite relative anyway. I know my son, and he was being more of a teenager asserting his independence than needing extra processing time. After a period of silence to allow Wil to think over his options, I reminded him that he was 16 years old and a Junior in high school. I asked him if 16-year-old Juniors sat on the floor when they didn’t feel like doing something. I asked him if he ever saw his sisters sit on the floor and refuse to go somewhere. No, when you are 16, you do what you need to do.
Wil honors his independence. He’s always trying to catch up to his sisters in age. In the window that they are one year apart, he believes that he’s almost gained on them.
Wil won’t even step foot in the elementary school where I work. He believes that will set him back in age. Even if I have to run into the school for a short while, he waits outside or in the car.
Still seated on the grey carpet, Wil talked to himself. About being 16 years old. About bowling with Kristi. About softball. This was a good sign. I watched as he worked through his emotions.
My tension built with each passing minute. Finally, I burst.
“Wil, enough. You know what you need to do. It is time to go. Get your hat and crocs.”
He pondered this for a minute then looked at me. “Hot chocolate at Biggby ?”
“It’s a deal. Let’s go.”
Once he was in the car we talked it over. About his independence, about honoring his commitments. I’m not sure if he fully wraps his mind around commitments. But it’s time to start talking about it with him. Anything that relates to independence has meaning to him.
I don’t know the level of independence Wil will reach. I don’t know if he will ever stop having stuck moments. But I do know how much he’s grown through the years. I keep growing and navigating it with him.
But I do get frustrated. Yesterday, when Wil was stuck, it wasn’t just yesterday. It was all the yesterdays I’ve been through with him. Some days I have the patience of Job, but yesterday I was done with it. When it’s time to go, I just want to go. I thought, how many years do I have to prepare him for days? How many years do I have to wonder if he will get up and go, or get stuck? It gets really old sometimes. Sometimes, I just don’t wanna, just like Wil just doesn’t wanna.
I suppose I’m a lot like Wil — spontaneity isn’t my friend either, unless it’s on my terms.
Individuals with disabilities are not more or less special — they are not put on this planet to teach us. All of us are born of the same place; all of us are born of our own ways. All of us are here just as we all are—meant to live and breathe and express our greatness the best we know how, in any way we know how.
But we do not see individuals with disabilities born of the same place we are. To make sense of it all we paint pretty pictures of angelic qualities, or dismissive pictures of lacking abilities, or tuck away the pictures in our minds, recoiling in fear and resistance to understanding.
Wil has undoubtably changed my life. But not because he’s special, or angelic, or here to teach me, or less than. He changed my life when I stopped painting pictures to make my mind more comfortable about his disability. He changed my life when I saw his greatness the same as mine, in his own individual way. That he was born of the same place as we all are, expressing his greatness in the best way he knows how, in any way he knows how.
When we see all of ourselves as born perfectly, in our own ways, then this thing called “acceptance” will no longer hold weight, because acceptance will simply—and beautifully complicatedly—be.
I just read an article about self-care in raising a child with Down syndrome. Eat healthy, load up on those fruits and veggies. Drink lots of water. Get more sleep. Oh, and don’t forget to carve out personal time for you. The author qualified that this can be challenging when you have a child with Down syndrome. Just do your best.
Well doing my best wasn’t good enough. And eating more fruits and veggies wasn’t going to cut it.
I called my therapist and started seeing her again. I found myself repeating the same old crap with her since we met when Wil was 2 years old. I called my trusted friends. Again, I found myself repeating the same old stories. With all I had been through in raising Wil, hadn’t I grown more than this? Hadn’t I become more resilient?
The truth is I had grown. The truth is my resilience had increased. But the truth is I also had my feet planted firmly against a wall that would not budge. I was determined to break through the wall. I pounded every which way I could. I pleaded. I cried. I waited. I screamed. I walked away only to walk back. Again and again.
Then one of my friends said something to me that I was finally ready to hear. The wall had made its stance clear. It didn’t want to move.
I was the victim of my own doing. I finally realized that. The hurts were real, the pain was real, but it was my choice to stand right where I was on repeat. As someone who values growth and resilience, how had I allowed myself this victim’s stance? I was the only one in control of changing that. But I didn’t. I pointed. I blamed. I yelled. I cried. But I never broke the pattern. Why?
Every morning I read spiritual text and journal. It’s how I keep my head up and moving forward. It’s a joyful and meaningful process for me. I look forward to this time. When the emotional angst built up, I journaled more. I read more. I became clear on the fact I needed clarity. So that’s what I prayed for. Over and over again. I wrote CLARITY in my journal and just stared at it. I laid in bed and emptied my mind and thought, “Clarity, clarity, clarity.”
In raising Wil it’s always been about Wil. Raising a child with a disability doesn’t magically turn you into an inspiring person as society would tell you. I certainly didn’t feel an angel bestowing me with special powers, telling me God only gives me what I can handle. I had to figure this sh*t out.
I’ve been in the trenches. I’ve made mistakes. I’ve lived. I’ve learned. I’ve lived and learned again. And again. Through the years my horizons have continuously expanded and I’ve experienced new views of sunrises and sunsets. Except that one damn wall. It remains firmly rooted in place.
Then one random day, just recently, I stood in the hallway of my home and it hit me. Pummeled me, actually. I don’t remember why I was standing there; likely I had just came up the stairs from doing another round of laundry. But it chose that spot, the clarity I’d been journaling for, seeing a therapist for, talking to friends for, and praying for. Right smack in front of the coat closet between the front door and the living room.
It came to me like a movie scene when an actor’s life flashes before their eyes. Except for me it was was my life with Wil. I felt the scenes more than saw them. Pixels created from emotion. The early therapists that came to our home. The conversations I had with them. The hope I gained from them, the learning I did with them. Even as I saw myself manipulating Wil’s tiny limbs – what that meant to me was stronger than seeing it. My awkwardness turning into naturalness, one hour, one day, one year at a time. Over and again. Grappling for unseen answers, then once in view, stabbing my pick ax in the rock firmly, digging my dangling boots in the cliff edge, and climbing my way up. And the view from each of those climbs – staggering.
I had never internalized my worth in all of these experiences. It seems silly to say that out loud, but it’s true. It’s one thing to know something intellectually, and another all together to internalize the full meaning of it. I knew now why I had never allowed myself to internalize my own worth – why the fight was always for Wil and not for me.
If I acknowledged my own sacrifices in raising Wil – even to myself — then that admits loss; the end of an ideal.
I had long accepted the end of one ideal and embraced a new one. But when a wall is built around a certain ideal, how could sharing one’s sacrifices ever chance to break through that wall. In my mind, sharing the wider horizons, sharing all that is and can be is the way through. But I only found myself further distanced with every growing year.
When I finally allowed the weight of the sacrifices I have made wash through me I felt cleansed. Lighter. Stronger. More resilient. Grateful.
I realize now that self-care article was so deflating to me as I was searching for the wrong thing (but I will work on those fruits and veggies!). I was seeking self-realization.
Since my epiphany in the hallway, I’ve turned the page on an old story. That chapter is finally over.
It’s not that I no longer care about those walls — they are painful as I care about them deeply. But they are not mine to tear down. I’ve vacated the victim’s shoes I’ve chosen to wear and packed my self-worth with me because I own it.
My best work is going where I’ve always been headed. Expanding horizons. Making sacrifices. Creating new ideals. One hour, one day, one year at a time — energy in motion.
This Monday there was not a 7 minute standoff success story as I shared last Monday. In fact, after 20 minutes I remained the only one standing.
After giving Wil silent time to process, there was not a hint of progress. I tried being silly. Wil loves being silly, so the tug to join my silliness is often hard for him to resist. All I got in response was a flat-toned, “Mom, stop.”
I finally called it — even though Wil already had — he’d stay home.
I never call “calling it” a loss. It’s hard, yes. It’s frustrating, yes. It can put me, his sisters, his therapists, his friends — whoever we have a commitment with — at an inconvenience. The time they have set aside has now been dashed. Gratefully, most who know Wil, know that he makes most of his commitments, but sometimes he gets deeply stuck. And when that happens, it’s not going to happen.
The winning side is that Wil and I both learn through times like this. Even if it doesn’t show at the time.
His is a quiet learning; growing under the surface like the roots of a tree. Stretching, reaching, drawing upon water, all underground. Then one day, these roots now strong, bust through the surface breaking a sidewalk slab in two, seemingly out of nowhere.
I create the environment for growth. Figuring out how much water, how much sun. Last week I got it right. This week I overdrenched. He dug in deeper underground. There’s no exact formula. You go by experience, by hunches, by what you heard another parent try. And keep trying.
Today the roots lay dormant, but just maybe I shared a burst of sunshine or quiet rain that was needed for growth to emerge on another day.
This blog isn’t about Wil, it’s about me in relation to Wil.
And I guess all my blogs are really about that. Because I had no clue how to raise a child with Down syndrome. And I don’t think many of us do. There are parenting books, but how many of your typically-developing kids fit those molds? Throw in an extra chromosome, with inclusion being a relatively new concept, and any road map you think you have dissipates into a mirage.
Most of my learning, rather than from books, can be likened to sitting around a campfire passing the peace pipe, except we parents are sitting in lobbies of therapy centers, or school hallways sharing stories of how to navigate governmental services, available therapies, what worked for our kids, what didn’t, and most commonly what worked for our kids one day but then didn’t the next. We all laugh at that last fact, as any sure plans have the staying power of a puff on the peace pipe.
But what’s solid is the connections I have made with those who support me on this path. What’s solid is the work I have put in to the best of my ability. What’s solid are the tear stains on my cheeks from so many hard, frustrating times when nothing seemed to work and days that never seemed would end; what’s solid are triumphs that emerged. By triumph I don’t mean always grand — though they felt that way. A triumph during one period was that Wil actually climbed out from under the table for a few minutes. When you feel directionless, and have no idea which way is up, you are willing to grab on to any sliver of light and expand it any way you can. A silver lining, no matter how slim, is always celebrated when it appears.
When I brought Wil to summer camp it was like standing at the top of a mountain and sticking a flag firmly in the ground. I looked around, and though there were more mountains around us, we had summited this one. It was not just about the day, it was a pinnacle moment; a symbol of the journey thus far.
I know my part in that, I know Wil’s part in that, and I know the friends’ I leaned on part of that. I know, deep down in my heart the worth of that.
And in one shared sentence to me about Wil going to camp the flag was lowered; the worth diminished. Of everything I did to get Wil there, of everything Wil did, of the friends and connections that were part of that journey, the sentence ignored that. The sentence was also more than just words, just like Wil going to camp was more than just camp. The sentence was a pinnacle; a symbol of the journey thus far. Like if Wil was treated as a typical kid, he would have been at that spot anyway. Not one mention of the journey. Not one word of respect for the journey. Not one word of honor for what it took to get there.
Wil is not a typically-developing kid nor will he ever be. Wil has Down syndrome. He has 47 chromosomes, we have 46. That’s not going to change. It is not a negative thing, it is not to be ignored like it doesnt exist. It’s not to be fixed, it’s not to be cured. Wil needs extra help, he needs extra time, and he needs more than I was educated to give him which is why I’ve surrounded myself with very proactive parents.
We are all truly better for knowing, understanding and honoring our friends with disabilities. I know that deep in my heart. I stand firmly on that, and I honor that. One sentence can not change that, but as I said it was a pinnacle sentence so it gave me loads of clarity.
I’ve been carrying the extra baggage of the flag-lowering type of thinking for much too long. Believing time will change it. But you can’t change what you don’t want to, and the only person you can change is you.
I’m handing the baggage back. I’m grateful for the strength of carrying it gave me. It pushed me deeper into what I respect and honor. But it’s not mine to carry.
At this realization I was hard on myself for taking that long to realize how heavy the baggage of another’s is that was not mine to carry. I mean, I could have set it down at any time.
But if raising Wil has taught me anything (and this journey has taught me a lot!), I’ve learned that it doesn’t matter how long it takes to reach certain destinations; what matters is that you do the best you know now, and keep doing that until you get where you want to go. And that extra baggage — that’s up to the owner. It always was.
Now excuse me while I step out much more lightly and enjoy the view from this incredible journey I never knew I wanted, and now can’t imagine life without!
Yesterday Wil and I had a 7 minute silent standoff.
He refused to go to summer speech and occupational therapy. He loves going, so I knew I had a chance of working through what was holding him back.
He was playing karaoke and didn’t want to stop — totally understandable. I told him he could pick up exactly where he left off when we returned.
“Track 6, Mom.”
“You got it, Track 6 Wil.”
Even with this seeming agreement, he sat unmoving. If I pushed, he’d dig his heels in and we’d never make it to therapy. He knew what I was asking and he wanted to go. But his resistance was holding on tight and he needed time and space to work through his resistance. So I stood between Wil and the karaoke machine and said not a word. He sat on the floor and said not a word.
On my watch the minutes ticked by 1—2—3—4— I began contemplating texting the therapists but didn’t want to make a move to indicate I was backing down.
5—6— Wil began talking to himself. My shoulders relaxed. This is a good sign, as he was processing out loud what we typically do silently. I held my quiet stance.
“It’s hard raising a child with disabilities.” If I had a quarter for every time I heard or read that statement. Bear with me while I flip the coin for a moment. No story is ever one-sided.
When I watched Wil walk off to his cabin for his first overnight camp, without even a glance back at me, my chest literally felt like it would burst open. Every part of my being begged to melt into an all-out uninhibited sob and fully feel all the emotions flow through and over me.
It felt like I had a million birds fluttering in my chest, crying to burst out. Each bird a story built upon another story that brought Wil and me to this very spot; stories of backward steps that said we’d never make it, stories of forward steps giving hope that we just might. Stories of angels on earth that took my hand and walked me through hardships; stories of those that withdrew emotional support and left me to walk on my own. Stories of my own inner growth; my own inner strength, my own education and devotion to this life. All of these stories now bound together begging to fly high together and exclaim in one unanimously strong and beautiful Hallelujah!
But I couldn’t let the birds free. I couldn’t give way to my sobs. I’d embarrass Wil. So I allowed tears to stream quietly down my cheeks. And that’s how almost every success Wil’s had has been. We work for it and work for it, and when it appears he’s like, “Yeah, what’s the big deal? We’re here now. Moving on.” We are like ducks paddling in the water—I know the destination, but I’m working under water. Coaching him how to paddle his legs. Sometimes he listens, sometimes we speed ahead, and sometimes we go backwards, sideways or float for a while. Sometimes I have to change course; sometimes I need to be patient with the course we are on. But we always arrive somewhere, and when we hit land, I surface and take a big breath in of the fresh air. The joy of the destination we worked for overtakes me. Wil looks around proud himself but with an inner knowing, like yeah, I knew we’d get here. You do know by now this is on my time and not yours. So here we are, right on time. Get control of yourself, lady!”
To Wil, I’m just his mom. I support him, I annoy him, I push him, and I spoil him. He’s moving forward in the way he intends to do. To him, this camp was right on time. To me, I knew what it took behind the scenes to get here.
We parents raising our kids are often called saints. That often puts me off because it puts us on a pedestal, rather than walking the earth right beside them.
I’m no saint, I’m just a mom that does what she does because she loves her child. But I have touched heaven being Wil’s mom; many times. Most recently I was standing on a little patch of grass at a summer camp, watching my son walk independently away. So maybe the saint-callers do have a point, because I would never have known that level of joy if I didn’t know the depth of the flip side.
Last night driving Wil home from the first Special Olympics golf of the season (he was in a high mood as he loves SOMI golf and was counting the days until it started again) he started calling me by my full name of Christie Leigh Taylor and cracking himself up.
“That’s Mom to you sir!” I said.
He laughed and repeated Christie Leigh Taylor several times in a row.
“Ok Willy Jimmy,” I said (Wil’s middle name is James).
“Willy Jimmy?” He asked. Then getting it he cracked up once again.
Back and forth we went— Christie Leigh Taylor on repeat and Willy Jimmy on repeat. We progressed to inserting our names into song lyrics. Then Wil came up with Christie Lee Murphy (after country singer David Lee Murphy) and about lost control of himself with belly laughs.
Wil is just so fun. There is no car ride that is without a made-up game, songs or laughs.
To the moms who supported me in those early years and beyond…
Instead of sighing, we laughed. Instead of crying, we laughed. Instead of our differences, we laughed. Laughter did not make light of. Laughter did not negate the challenge of. Instead, laughter is depth of connection. Instead, laughter is inner understanding. Instead, laughter is unity. Instead, laughter is fortitude to navigate the challenge of. Instead, laughter is kinship.
'WIL'ingness = Willing to Embrace Extra in Life 