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.