I just read a very saddening story how a mother’s son was denied certain medical services because her son has Down syndrome. Of course this is discrimination. And just plain wrong. Her point in sharing was that our voices are so very important and powerful. I’m so thankful she took the time to share her story not so we could get angry, but so we could get loud. To be proactive with our voices. That there is still ignorance surrounding the value of our kids lives. Our kids need and deserve our voices to be heard! I’ve always believed our stories need to be heard, even and maybe most importantly, our daily lives. Wil smellling flowers, Wil hugging his sisters, Wil loving on his dog, Wil swimming in the pool, Wil doing his homework. Our lives have certain challenges, but our life really is not that different. What life does not have a mix of challenges and joys? I’ve grown so much in learning to work through the challenges, which elevates the joyful daily moments to new heights. I truly would not change a single moment!
I’m thankful I had the exact opposite experience at Mott Children’s Hospital yesterday. As the endocrinologist walked in the door the first thing she said was, “He is such an angel.” His sisters, who were also sitting in the doctor’s room, chuckled at this because to them he is their little brother! He loves to tease and pester them as many little brothers do. He is both an angel and a little bit of a devil Aren’t we all?! This life is so ordinary and so magical all at the same time.
Never think you have too ordinary of a story to share. The world needs glimpses into our daily lives to erase the fears! Whenever you share a story, whether it be full of elation of a successful moment, or working through certain challenges while holding strong to faith, or a beautiful snapshot of an everyday moment, share it with LOVE. FULLY BELIEVE with all your HEART that the feeling of this moment shared will reach the right person at just the right time. VISUALIZE a mind blossoming open. We have all had our minds firmly closed to certain ideas and then an experience suddenly gives us an enlightening new view. It’s quite a miraculous feeling. Give others that gift with your story. Our loved ones with Down syndrome deserve at least that much. 💙
“Haha, you know he does! But that’s kind of the point. He lives out loud. It’s funny, as we get older, and supposedly smarter, we seem to close ourselves off to living out loud. We get set in our ways and our beliefs. Wil broke me of that, and thank goodness. I think everyone needs those wake-up calls in life to shake them out of their set ways. He shakes things up and makes me look at things in a new way almost every, single day. Do you remember how I called something ‘weird’ the other day? Then you corrected me and said I should use the word ‘different’ instead. I really appreciated that. You said what may be weird to me may not be weird to someone else. It was just their way of doing something that was different from mine. Well, that’s kind of the point with my blog. There is a lot of fear surrounding Down syndrome. Even though in a lot of ways Wil is the same, people fear what is different. And it’s not because it’s bad, it’s just because they don’t understand it. By writing these blogs, I hope to bring some understanding. And more than that, fully embracing Down syndrome. The way Wil lives is very freeing and invigorating. Something a lot of us adults could learn from. This blog is in big part for what Wil stands for. Think of the kids in school. They all love Wil because he doesn’t judge them. No matter who they are, he will readily give them a great big bear hug just because he loves them for who they are. Or how we all know when Wil eats a chocolate donut he says “mmmmmm” out loud with every single bite. It makes it so much more fun to have a donut with him. Or how he stopped in the headphone aisle at Target, put a pair of headphones on and danced to the music. He can make any kind of experience fun, no matter where we are. But as adults we get so used to things and so get bored with life. We get set in our ways and our beliefs, and life gets kind of dull. Wil never, ever gets bored. And he never, ever lets life get dull. If he can do that, then can’t we all do the same in our own way? Wil gives us permission to be free, to have fun, to be who we are in our essence. The irony is, many of us fear Down syndrome, when I think what we really fear is letting ourselves be exactly who we are.”
I have a For Sale sign taped to the inside of the passenger window of my truck. Wil was home sick from school with a wheezy cough, so we were headed to the doctor. With his sisters in school, he excitedly opened the passenger door for the coveted front seat. He looked up at the For Sale sign taped to the window. With just enough sunlight to make the sign transparent, he read through the back of it; he said out loud, “Miles.”
“Hey, Mom! I see Wil upside down!” I looked over and saw it. There it was, plain as day in bold black Sharpie. “Wil” is in fact, the first three letters of the word “Miles” upside down.
And that is pretty much what Wil does to my perspective every single day. What I see as very common-stance and ordinary stands out as something new, creative and fun to Wil. And thankfully he shares his perspective with me so I may too, see that the only thing that’s ordinary in this life is our perspective. He can make magic out of just about anything.
As a 49-year-old adult, I’m prone to routines. Especially being married with 3 kids, a job, volunteer work, and working out, I am consistently fine-tuning and seeking new ways to streamline my schedule so I can do all the things I choose to do in a day. The side effect to this, for me anyway, is I can get task-focused and forget to see what is around me (that may be why I enjoy running and swimming so much, it’s my time to unplug and be in the moment). If I don’t make an intentional choice to be present, I easily become focused on what is ahead over what is right now.
Wil is rarely, if ever, is directly on task. This fact can be quite frustrating if you are in a hurry. Anyone who has lived or has spent lots of time with a loved one with Down syndrome knows what I mean. Hurry is simply not in the vocabulary. Whenever possible, I always add in a 10-15 minute buffer when we have somewhere to go because there always seems to be a delay of some sort (unless he doesn’t want to be somewhere, then he can find an exit and be gone before you’ve blinked). Wil knows he’s not very fast and it’s even become a bit of a joke around our household. Wil’s very particular about what hat he wears each day. Occasionally, Wil decides to change his hat just as it’s time to go out the door. So I’ll say, “Ok, Wil, go get your hat, quick like a rabbit!” And he’ll laugh and say with very slow, exaggerated steps, “Ok, Mom, sloooooow liiiike a tortoise.” 🙂
At the school circle drop-off, there is a 7-second rule. Kids are supposed to exit the car in 7 seconds and then the driver rolls away so the next car in line can pull up. This keeps the circle moving smoothly and efficiently. Even with our best efforts, 7 seconds is not realistic for us, so most days we park and walk up to the school. Some days Wil wants to be dropped off at circle, so we do the best we can. I know some parents have seen us go around the circle 3 times because Wil isn’t quite ready. We all have our “3 circle days.” Just the other day, he wanted to be dropped off at circle, but “Boys ‘Round Here” came on the radio. He loves that song! It was still playing as we pulled up to the drop-off and there was no way he was getting out until the song was over. So around we went, but the song was still playing on the 2nd round. So I ended up pulling into a parking spot as we jammed to Blake Shelton singing to the end. When the song was over, I rolled back into the circle line and Wil made a successful exit in what I’d guess was maybe 12 seconds. That’s rabbit time for us! That may have been our 3rd time around but Blake Shelton gave both of us a happy lift to the morning.
That’s how it is for us. It takes us a few extra laps around the circle. Someone else’s tortoise pace is our rabbit pace. And we celebrate that. Sometimes I think it would do us all a world of good to take an extra few laps around the circle every once in a while until we felt good about the day ahead. This world moves fast and we all move fast with it. We value the rabbit over the tortoise as the years pass and our lives get busier. We hardly stop to listen to a song all the way to the end, or take time to read a sign in it’s entirety, let alone take a moment to view it upside down.
We zoom through life waiting for life to “happen” to us, rather than “happening” to life by approaching it in a new way. Shifting our view, or taking another circle around can change everything. When Wil looks at something in a new way and shares it with me, I’m always left with a feeling a vitality for life. It’s like this little secret to joy that’s been unlocked right in front of me. All these little pieces of magic, right here, right now, to discover every single day. I’m thankful for Wil’s reminders of this fact, as many times as I might need them.
It was nearly 8AM and my son was busting at the seams. The dog was wagging around picking up on his energy. A quick glance out the window and I could tell it was not frigid cold. The trees barely swayed indicating the lack of wind, and no frost had accumulated on the ground. My weather app showed it to be 29 degrees; downright balmy for this time of year.
“How about taking Woody for a field walk, Wil?” Woody was definitely on board. Hearing the word “walk” he did a little jump and his tail went into hyper-sonic mode.
“Yes!” Wil said and ran off to pick out which hat he would wear. Always the most important accessory, according to him. Wil chose his warm Red Wings hat signed by Luke Glendening. We zipped up coats, pulled on gloves and boots, and still in pjs underneath, we flew out the back door.
Woody ran ahead with his head down sniffing all the animal scents along the way. Wil and I made our way down the flattened part of the field.
“Dad cut this part.” he said.
“Yes, he did back in the fall. Now that it’s winter, the grass doesn’t grow so he doesn’t have to cut it. Feel the frozen parts under your feet?” He responded by making big stomps on the ground. As Wil has Down syndrome, and it has taken him time to learn to talk, and to express his emotions, I truly enjoy listening to his thoughts. Each word of a sentence is like a little gift.
Woody cut over to the adjoining field so we cut across the brush to follow him. In that area is a big pile of large tree limbs that was used by the county to divide our property from the county’s. Wil wanted to climb the branches so we stopped there. He put his leg up on the branch and tried to hoist himself up.
“Uh! I caaaaaaaaaan do it!” he said as he pulled with his arms on a higher tree limb and pushed down with his foot. He pulled and pushed and then he plopped down on the ground.
“Uh! That is hard work!”
“It is, try again and I can help you just a little.” We tried again and he made it up on the first limb. The height scared him and he immediately asked to come back down.
“Let’s walk, Mom.”
So off we went until we came to some of the trees his sisters like to climb. He made the same attempt there with the same results. I tried again to help him by pushing up on his leg, but as soon as he reached the bottom branch of the tree he became scared of the height and asked me to stop and let him down. He sees the things his sisters do and wants to do them so badly. He watches his sisters climb trees and jump off the dock to swim at my parent’s lake. One time at the lake he did not have his swim suit, and my mom gave him one of sister’s just so he would have something on. He was so excited as he thought it would magically make him swim like his sister, Katherine. Wil ran out to the dock full of energy and hope. As soon as he reached the dock, he realized that the powers he had imagined had vanished.
These experiences give me a twinge of sadness for him. But that doesn’t last long because Wil doesn’t stay in that place like I do. Wil has already moved on. When he realized Katherine’s suit lost its powers, he went down the steps of the dock into the shallow part of the lake, right next to the seawall that he can grab hold of when the waves come in from a boat. He splashes, laughs, stands on one leg and says, “Look at me Mom!” I wave back and smile, and say, “Wow! Great balancing, buddy!”
So today after his tree climbing attempt, though I’m sure he felt disappointment, he didn’t linger in those emotions. He was already off in search of the biggest branches that had fallen to the ground. He struck gold. He lifted it up, grunting to exaggerate it’s weight. He held it up proudly and said, “Mom, look!”
“Wow, that is huge! Look how strong you are!” And soon he dropped that one and went in search of another. This fun adventure went on for the next half hour.
I watched as he crouched down, lifted up yet another branch to show me, then he dropped it and quickly searched for another. I thought of his low muscle tone and how beneficial this was to him. Not to mention all the sensory input. Oh, that special needs mom brain is always kicking in!
But it wasn’t just Wil benefitting, I was too. I breathed in the fresh, crisp air and enjoyed this moment for what it was; simple, beautiful, perfect. There is little that compares to the gifts nature gives by purely being what it is.
As far as Wil has come, I realized how far I have come right along with him. This road to acceptance is not a point to point destination. It’s a continuous road. Sure I can say I accept Down syndrome fully, but it’s not that simple. If acceptance is accepting a person completely as they are, then it can not be a static thing. We are always evolving, so our level of acceptance must be too.
Today when I felt a pang of sadness for Wil when he could not climb the tree like his sisters, I won’t see it the same way next tomorrow. We will both have moved on to a new adventure and we will again circle back to that tree for another attempt but at a different level. Each time he will be a step closer. One of these days he will climb that tree, and we will celebrate it all the more for the adventure it took to get there. And with each attempt I will have learned something new right along with him.
As Wil hoisted up the biggest branch yet, he exaggeratedly grunted and then giggled as he wobbled from foot to foot showing off his latest find.
“Take a picture of this one, Mom!” It was barely 9AM and we already were experiencing the greatest of adventures right in our very own back yard.
Acceptance…I’ve never seen so much masked fear surrounding another subject.
If there is acceptance, there is no need to cure or fix it, because it is recognized as full and pure as it already is.
That is exactly how I see Down syndrome. Full and pure as it has been created.
Down syndrome is not a disease. It is not something to be cured or treated.
I understand having a struggle with this. Having an extra chromosome results in certain differences than those of us with 46 chromosomes. We want to fix anything we do not understand. We all come to our fears from our own directions. Our varied backgrounds, teachings, experiences. We all have our own stories and our own vantage points. That is why where we are in acceptance is not to be judged. It is a journey we travel to in our own way and our own time. I look at the journey to acceptance as this large funnel. Acceptance is at the apex, and we all wind our way in from somewhere in the outskirts. Some of us are wayyyyy out there with a longer winding road to make our way in, and some are much closer. But acceptance is located one point, one place. It does not vary. It simply and powerfully “is.” And that point, that apex of acceptance, I believe, is love. Pure, absolute, unadultrated love. All the milestones, the comparisons, the fixes and cures fade away. Right in this point, Down syndrome is accepted for the beautiful, perfect chromosomal creation that it is.
Let me be clear that acceptance is much different than complacency. Where complacency stops, gives up, or doesn’t care, acceptance infinitely gives and gives and gives. Milestones and markers are important. They have their place. They are a measurement of progress. We all need that in our lives. But what we have to be very careful of is the comparison of milestones or trying to “cure” Down syndrome. Our children are perfect just as they are. They have gifts of their own as we all do. When Wil started to walk, he was about 2 years old. We did all the things we were supposed to do. Checked off all the boxes and followed all the physical therapists suggestions. Even so, Wil did a few things out of order. Such as, when holding on to railings, he could place one foot directly in front of the other on a balance beam before he could walk unaided. Apparently this one foot in front of the other type of walking is supposed to develop after a child learns to walk independently. But he learned to walk and soon he was off running. With love, encouragement and the therapist’s expertise Wil walked when he was supposed to walk. We tried rushing potty training with him and that was a huge disaster. So, again, following the rules, checking the boxes, Wil was officially potty trained at age 4. Meanwhile, Wil’s friends with and without Down syndrome were meeting their milestones when they were supposed to. It was really important for me to stay true to Wil and his progress without comparison of others. This was a large learning step to full acceptance. There was a lot of noise from the outside on certain pills he should take or things he should do. One story I’ve shared before that always makes me giggle is how it was suggested to my parents by a friend that I didn’t have time to potty train Wil so they should do it for me. My parents kindly took Wil for a weekend while my husband and his sisters went on a camping trip up north. My mom called that night and said, “Uncle!!” We both had a good laugh. Wil is ready when he’s ready. It’s great to encourage our kids, but true acceptance is allowing them to get there when they are ready with all the supports available around them.
I shockingly still hear things like, “He doesn’t look like he has Down syndrome.” Like that’s supposed to be some kind of compliment. I love Wil and Down syndrome is part of him. I don’t want to cure or change Wil’s Down syndrome. I have absolute, full acceptance of who he is and part of that is having 47 chromosomes. When I hear talk of trying to cure or change this I immediately feel anger. But I’ve matured (sort of) over the years and I take a deep breath when I feel that anger. I investigate that feeling and remind myself that everyone has their own journey to full acceptance. That many people still live in fear of what these 47 chromosomes mean. They want to fix or change it as if something is wrong. But nothing is wrong. It’s exactly as it should be. That doesn’t mean it’s easy, it simply is a different way of life. And really, don’t we all have our own different ways of life? So now when I catch myself feeling that anger, I visualize that big, funnel winding it’s way to acceptance. I visualize this person winding their way on their journey, and I send them blessings in my mind. It’s not an easy journey, and we are all in our own places on it. If I truly want love for our kids, I need to share the love for who they are, not anger because someone is in a different place than me. I can’t fight fear with fear. But I can make great gains with sending love because that is the essence, the apex, the meaning of acceptance. The more I accept and share the love for the life we live, the more I can invite others into this beautiful world of acceptance where we are all created exactly as we should be.
As I drove home from an early morning workout today, and reached the winding, open country roads near my home, I was struck by a feeling of light-hearted, yet subdued euphoria. It was a very peaceful feeling. I investigated that feeling. Of course, working out always gives me a wonderful lift, but there was a peacefulness about this feeling that was different from an endorphin rush. Before me, across the wide-open fields, the sky was a big, blank canvas of white. It was a misty morning and there was not one ounce of blue in the sky. The clouds had completely melded together and blended softly into the rising mist from the ground. It was a subtle yet serenely beautiful sight.
We all hark for sunny days. Bright, warm rays breaking through fluffy cloud pillows, warming our shoulders, lifting our spirits, and beckoning us all out to play! Strangers say hello to one another on the street, everything feels a little better and a little brighter for the gift of the sun.
These feelings don’t easily rise to the surface on a cloud-covered misty day. Yet this morning, I was hit with the subdued beauty of it all. Of the greatness and vastness of the white space before me. A space where all color stems from. A space where all is possible in this vastness.
When I arrived home, I vowed to keep this special kind of light I felt within me. It’s funny when you change your perspective on things, how everything around you changes. I had some breakfast and then went to take a shower. My shower curtain has a watercolor picture of the Tree of Life. It’s a very colorful shower curtain and I chose it for that reason. Knowing this curtain would be one of the first things I saw every day, I knew the bright colors and the symbolic meaning would be an immediate spirit lifter. Today, however, when I placed my hand on the shower curtain to pull it back to step in the shower, I noticed not the colors, but the white space the colors were painted upon. The white seemed almost inconceivably bright. I then noticed all the little details in a single, purple-pink petal on the tree. In all the time I had this curtain, I saw only all the colors together, but today noticing the white, it brought out even more detail and brightness in the colors.
The lightness of the clouds and the mist added a lifting calmness to my morning, and it will last further into this day and beyond. As winter makes its way, and the days of sun fall fewer and far between, I will draw back on my memory of this morning and bring it back. I will fill my heart with this subdued, yet powerful calmness. Not every day needs to be cheery and bright to be deemed good and heart-warming.
What I before easily saw as dull and grey, I now see as a vast, open backdrop that makes sunny, colorful days shine with even more detail. Days like today are perfect for quiet, serene reflection. For appreciating these background days of life that are like big, blank open canvases upon which to write our own beautifully colored and detailed stories.