Last night as we all piled onto the couch to watch TV before bed, Wil stuck out his little bare foot, and I couldn’t help but tickle it.
He burst out in laughter and said, “Do it again!”
It’s easy to see why people like to be around Wil. He is quick to laugh, and is always open for a hug. He offers a genuine smile that finds you smiling right back on your hardest day. He accepts everyone, and rejects no one. How many people can you say that about?
So, why are our kids with Down syndrome not so fully accepted? Because, our being accepted for ourselves makes it easy for us to accept others. The challenges that come with Down syndrome, the differences, well, those are not so easy to understand, and therefore, accept.
Every time I sit down to write about Wil, I am faced with a certain dichotomy. If my goal is to foster acceptance, then how can I do that when I talk about Wil’s differences and challenges? All kids have challenges, true, that is a quickly and regularly accepted fact. However, Wil, and his friends with Down syndrome are instantly slapped with a label that says, “YOUR LIFE WILL NOT BE WHAT YOU EXPECTED.” And, therein lies the catch. What we don’t understand, we fear.
Generally, in life, we have a broad general view of what we are going after, of what our lives will look like, or want them to look like, and how our children will fit into that picture. Then, this big, unexpected “EXTRA” doesn’t fit in that view. It’s somewhere in a distant periphery of that view, and well, the unknown has never made anyone feel particularly comfortable.
In my writings, I bring that periphery up close and center. Photos of Wil playing, laughing, sharing, enjoying life and us enjoying life with him. Celebrating our child, celebrating the unexpected.
Yet, that is the easy part. That is the part that invites you in, that warms you and makes you feel comfy cozy. But, I haven’t invited you there fully yet. I’ve invited you to the easy part. And, as a friend once said to me shortly after Wil was born, “You will be a great mom to him. He will have a good life, and I’m happy for you. I’m just glad it isn’t me.” This friend meant well, and it was intended as a compliment, but that last sentence reveals the place I haven’t been able to reach. How do I draw you into this periphery where no one wants to go, much less pay attention to? How do I ask people to overcome their fears when I was so scared to go there myself? How do I ask people to look beyond Wil’s cute, sweet face, and also appreciate his challenges, his differences, to attain a full acceptance of him and his friends with Down syndrome?
How do I explain the multitude of hospital visits in that incredible blur of Wil’s first year, and though it was difficult, it is for this experience that I am instantly warmed by the immediate understanding I can detect in a doctor’s eyes, and the knowing smile in a nurse’s kind eyes. How would I ever know and even recognize the power of these seemingly simple gestures without living through the challenge? It would be impossible.
And, how do I explain meeting the therapists that innately understood Wil, and did not shield themselves with clipboards, sharp pencils and statistics that Wil needed to fit within the confines of whether he did or not? Those beautiful souls who sat down with him and asked him questions that put him immediately at ease and I could visibly feel his shoulders relax(and mine, too!)? How do these almost imperceptible experiences that are prone to fly quickly from my memory, hold to the forefront of my mind like superglue?
How do I explain the patience Wil’s sisters have learned? How do I share that even a simple trip to the post office can be a trial, yet they hold his hand, and know just how to coax him in. And, yes, there are days they are tired of being patient, and they wonder aloud to me why their brother can’t be just like their friend’s brothers. Why everything has to be different? And, then, that very same night after such a conversation, when my heart aches for them and my mind races on how to make this right, my daughters asked if they could help Wil with his homework, and once completed, jumped around the room with him yelling, “He read the whole thing by himself!!”
How do I explain sitting down at a table with my friends, the friends who I came to know only because Down syndrome brought us together. The sharing all of these experiences with one another that at one time were foreign to me, and now I laugh so hard with them at our shared experiences. This gives me strength to handle the challenges, and heighten the joys until my heart is about to burst. How do I explain the pure power of that kind of connection?
All of this runs through my head as I tickle those little feet. How do I explain how thankful I am for this simple moment? Our past moments? And the ones to come? How can I explain this without inviting you in to the whole picture?
So, come on in! The door is open wide! Kick off your shoes, that’s how we roll around here 🙂