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.
Little daily blessings grow into a very prospered life when focused upon. Happy Thanksgiving, Friends!
A lot of people are stuggling out there, and that’s even as life is supposedly getting easier. Heck, we don’t even have to leave our car to get a cup of coffee, or to pick up groceries. In many ways, this is a blessing. We have many things to do that take priority and hold more value. Let’s save our energy for what matters. And with young kids, it can be downright exhausting to grocery shop, especially in the winter getting everyone geared up.
However, there are aspects of modern conveniences that takes away something. Our connection with others. I remember when I had 3 young kids under 3 years of age at the grocery store. I was standing in the checkout, the kids almost at their limits. I was keeping them occupied as the woman in line ahead of me was getting the last of her items bagged. As she put the last bag in her cart, I inched forward with my cart, Wil in the child seat and the twins on either side of me. I was still talking, singing, cajoling. She walked up to me, looked me right in the eye and said, “Mom, you are doing a great job.” I surprised myself by tearing up. It was exactly what I needed to hear in that moment. I realized I was running 110% on damage control. Add in that I was still navigating my way through figuring out therapies for Wil and how this whole Down sydnrome thing works (I tell you, you question yourself so much when navigating something so new like this: is there a therapy, a specialist, a learning tool I could be missing? Am I doing enough, will I ever be doing enough?). So those words she shared with me went really deep.
She shared that her kids were all in their 20s now, but she remembered well that time when they were little. I promised myself that I would pass on her words to another mom just as she did to me. I would try to remember well these days, so I can share a much needed kind word with another mom. And as time has passed, I’ve done so, this woman never leaving my memory.
I’m thankful for the conveniences we have today. I could have stayed home, and had extra energy in my day to spend on other priorities. And that would have been beneficial in many ways. But that said, let us never forget the value of one-on-one connection. To make this world better, to help allieviate some of the suffering, we must truly connect with one another. There is a specificity to that connection, even with just a few words, which runs deep.
In this world of conveniences, let us not forget how powerful an open-hearted face-to-face encounter can be.
Yesterday morning Wil was a tough one. Would not get out of bed, would not get dressed, would not eat, would not decide on lunch, would not brush his teeth, would not would not would not would not would not.
The twins needed to get to school, and Wil was still sitting on the floor in his pjs absolutely resolute to do nothing but that. And I believed him. Whoever is able crack the code on the Down syndrome brand of stubborness will win the Nobel Peace Prize some day.
I weighed the checks and balances. Force Wil, and it only goes downhill from here. Give him some space and time, and he’d be good to go. Fortunately I didn’t have to get right to work so I told him he could go to school late today. A slower morning would result in a much more productive day overall. And the twins could enjoy a pleasant ride to school. It worked like a charm. After dropping the twins off at school, he relaxed, got dressed, ate breakfast, and even packed a whole extra backpack full of toys to bring with him. He got to school 45 minutes late but made it through the entire day.
This morning I prayed would be a better morning, as I was working and Katherine and Elizabeth would be on “Wil duty” as we like to call it. As I left work and headed for home, I got a call from Katherine. Uh-oh.
“Mom, Wil wants to be dressy today. Like coat and tie dressy.”
I was so thrilled that he actually got out of bed and wanted to get dressed for them I said, “Great! Compared to yesterday, this is what I call success.”
“But, Mom, is that really appropriate for school?”
“Going through what we did yesterday, if he wanted to splash glitter all over his outfit I’d ask what color.”
“Haha, ok, Mom. I’ll see what I can do. See you soon, bye.”
When I got home, they were all standing at the door, backpacks on and ready to go! Oh, how something so seemingly simple can bring the greatest joy of relief. I could see the girls had talked Wil down to a buttoned collared shirt and grey pants. Off we went, Monster Mash playing, and we all sang right along, but when we pulled up the the girls’ school, they turned down the music and stopped singing because you know, it’s not cool when you are 13. But, as a mom of 13 year olds, it’s so fun to embarrass them (and I think they secretly like it) so was tempted to blast it again as they stepped out the car door. But they were awesome rockstars that morning, so I decided to save embarrassing them for another day.
Katherine and Elizabeth are so good at rolling with these unpredictable changes in behavior. I asked them if it’s hard for them sometimes. They both said no, it’s just Wil. That’s how Wil is. There are good days, not-so-good days, and Wil days.
I sometimes hesitate to share the challenging times. Because there are many. I want minds to open to Down syndrome, not close down even more than they already are. But life is big. Life can not simply be categorized as all good or all not-so-good. Each of us has our own brand of Wil days. Days that may not be specifically common to others, but they are common in that these days are specifically challenging for us in our own personal lives. Life is full of ups, downs, unpredictable changes and various little speed bumps in-between. And it’s navigating all of these places, figuring it out, even on the days when you don’t think you have any extra patience in you, you know you have find it. Because if you force it, or shy away from it, you won’t make it through the day. But getting through those places, bit by bit, are how simple moments in life shine. Like seeing my kids all at the ready, smiling in their backpacks after I know it was not a perfectly smooth morning. And when you are sitting in the car singing Monster Mash with those same kids, even though it can be really hard, you feel like you are the luckiest person in the world and would rather be no where else in the world than where you are right now.
October is Down Syndrome Awareness Month:
In seeking inclusion for our kids, the focus is quite frequently on limits. Whether it be overcoming pre-conceived notions, or adaptation in the education system, we live in a day-to-day focused world where our individual strengths and weaknesses are highlighted. While this is important, there is another level to inclusion. A level above limits. In fact, in this place no limits exist. It is a place of giving of ourselves. Giving of ourselves with no strings attached. Giving because we love. Giving because we care. When we give freely of our own choice, the level of our giving is infinite. This type of giving raises us and those around us to a higher plane. A level above limits, pre-conceived notions, and individuality. A place we are all one. When I am witness to this, it is truly a spiritual experience. My guess is you have felt this in your own life too. There is no need to adapt, question, overcome, because in this plane we are all completely free as we are. There is no need for inclusion because we truly already are all one.
Do you know what I think about Down syndrome?
Down syndrome is dancing to a tune that you may not hear but feel deep down in your soul. Down syndrome is remembering how deep belly laughs are some of this earth’s best medicine. Down syndrome reminds us that being in a hurry is overrated and there is always time for a hug. Down syndrome should have it’s own termed category in stubbornness. Down syndrome is a reminder that some of life’s challenges are also life’s greatest blessings. Down syndrome reminds us that we may not forget, but we have the capacity to forgive. Down syndrome unites strangers turning them into fast friends. Down syndrome is challenging, beautiful, joyful, present, giving and free.