Christie Taylor Uncategorized

Self-Care, Self-Realization, Self-Worth

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.

Christie Taylor Uncategorized

Firmly Rooted

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.

Christie Taylor Uncategorized

Pinnacles

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!

Christie Taylor Uncategorized

The Flip-Side

“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.

No story is ever one-sided.

Christie Taylor Uncategorized

Car games

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.

Christie Taylor Uncategorized

The Amazing is in The Choice

There is no magic formula to acceptance of our friends with disabilities.

Acceptance, in its essence, is very simple.

You don’t need to be a special person. You don’t need to be born kind or compassionate or patient.
You don’t need to be energetic or inspirational.

You don’t need to be anything other than willing to open your mind to acceptance.

That’s it. You don’t need anything else. It’s simply to be or not to be.

Once you truly open your mind to acceptance, the rest will come. The new ways of thought. The adventures you never considered. The new friends you wouldn’t have known otherwise. It’s the experience, once accepted, that delivers the specialness, the kindness, the compassion, the inspiration, the energy and the patience.

But if you keep your mind closed, then you’ll never know the amazing you are missing.

Acceptance is not a natural-born talent or a skill; it’s a choice. And that choice is up to you.

Christie Taylor Uncategorized

Tree Wil and Glitter Christie

The past fall, I struggled with the thought of never truly being an empty nester. My thoughts were a twisted, tangled jumble of yarn – strands of prickly burlap wound tight around strands of brilliant, transparent glitter.

The brilliant strands of glitter represent Wil’s near constant song. Nearly every event calls for a song — when he’s playing, in the shower, in the car, or outside for a walk; anything and everything is inspiration for music. The brilliant strands of glitter also represent Wil’s ever-creative and impromptu silliness. Just yesterday Wil grabbed a branch, held it up and said, “Look Mom! I’m Tree Wil.” And we both broke up into giggles. I can count thousands of such impromptu acts over the years. There is nothing too small for Wil to make big of. He could make a brown paper bag fun—and has, many times! The brilliant strands of glitter also represent Wil’s ever-expanding growth, independence and self-advocacy. Each year he reveals to us more and more of what his true abilities are.

And yet, even at Wil’s highest levels of self-advocacy and independence, he will always be vulnerable. He will always need some level of care beyond his own. When thoughts of Wil’s vulnerability overwhelm me, the prickly strands of burlap sprout and wrap themselves tightly around the brilliant glittery strands, shrouding their luminescence and razzle-dazzle, weighing them down like a heavy, clingy, weedy vine.

It is the burlap strands I’m stuck in when I envy my empty-nesting friends their freedoms. Don’t get me wrong, I am happy for them – I thrill at listening to their planned or dreamed of future adventures. It is the sense of freedom that lay before them that I envy. I envy that for them this is the natural order of things – that this type of freedom is expected.

For our family, a lot more is to be considered — Wil’s care must always be considered. He can’t be left alone for extended periods so we are always aligning schedules. Vacations must be made that suit his needs. If a situation is loud and very crowded, Wil may refuse to go in. If Matt and I chose to go out on our own, who would care for Wil while we were gone?

I also felt the same when people talked about not wanting to live past a certain age. One night after a sporting event, Matt and I went out to dinner with only 2 friends that I knew and the rest were acquaintences of Matt’s. We were all spread out down a long, rectangular table. A man about my age and his girlfriend were seated directly across from me. During the course of conversation the man said, “Well, I don’t want to live past 80.” I then asked him why that was so. His reasoning, as you would expect, concerned his own abilities. I then asked him, “What if you had a child with a disability that relied on you? Would that change your mind?” He stared blankly at me.

We only see what we know. But there is so much more to see than what we know.

This past fall, I was seeing things just as that man across the dinner table. A tightly woven, blocked perspective.

If my mind stays stuck on certain freedoms that I don’t have, how will I open my mind to see all the freedoms that I do have? And all the freedoms available that I don’t yet see.

Wil continues to grow and expand in his maturity because he sees beyond a finish line to growth that many of us draw for ourselves. Wil’s creativity and spontaneity knows no bounds for the same reason. At one point, we stopped seeing branches that could be created to form Tree Wil. In fact, now many of us walk past branches that we don’t see at all.

There are so many things that I do not see! And Wil reveals that to me every day, many times a day. So why can I not unravel the heavy, clingy prickly parts of my own life and instead view them in a new light? Why not let the brilliant, glittery strands elevate my perspective?

Why, because my life may look different than another’s, can I not shine light on a whole new natural order of things? Why must my natural order match another’s?

What I see – and more importantly what I don’t allow myself to see – are the only blocks to my very own freedom no matter where I go, or don’t go.

Signed,

Tree Wil and Glitter Christie

Christie Taylor Uncategorized

Take Another Think

We may believe our thinking is correct; or it is good—that we are good people.

Even those of us that call ourselves open-minded may find we have unwittingly closed off our minds when spending time with individuals with disabilities.

Why is this?

Because we have to see it their way first to understand. And many times — in some cases most of the time— their way is not easily readable. So we push our agenda on those with disabilities.

Individuals with disabilities’ way of communicating may be very different, or even non-existent in a verbal sense, so actions must be carefully observed. And even then we may remain clueless. It takes too much patience, and so we, even unconsciously, push our way on them, or we ignore them.

Our own belief system must be suspended to decipher theirs. We must let go of trying to be “good” or “helpful” because our version of what is good or helpful may not be for them. This very fact is likely the most challenging, and yet the most empowering process, in our very own lives.

When we suspend our own belief system in order to understand theirs, something shifts within us. Something bigger, something higher — spiritual even.

This process has no end. In fact, in 16 years I’m only just beginning. I’m stronger than I’ve ever been in trying to understand Wil, and understand the world’s reaction to him. I’m learning as a parapro to understand many differing abilities. It’s challenging and I need the expertise of those around me, because again what I think of as being helpful may not be helpful to them.

But it’s also so amazing to understand what in some ways may never be understandable. It wakes up something in me. Not because I’m trying to be a good person; it is because I truly want to understand what these kids are trying to say.

Those with disabilities are true gifts to us all—and yet this population is so very ignored and misunderstood. We must first forget ourselves, in full effort to understand another, and in that we find a stronger constitution of our own selves within.

Christie Taylor Uncategorized

Special Needs Siblings

These two young women have stepped up to the plate more than most realize; and they do it with love and grace.

That said, Katherine and Elizabeth treat Wil like any little brother — loving him, being annoyed with him, and standing up for him. Their life requires an extra level that is not easy to understand, unless you also have a sibling or loved one with a disability.

If you do, you are probably nodding right now. Here’s to you, and to the path you walk, and to what you give to this world.