We are half-way through Rett syndrome Awareness month. So far, it’s sucked; not only for the Rett syndrome community, but I know for the FoxG1, as well. I also know when we speak of “Awareness” it’s usually in the context of making the larger community aware of Rett syndrome, how it affects our girls and boys, how it affects families, how we are SO CLOSE to real effective treatment and how that treatment might extend to other neurological issues as well. But, today that’s not what I’m talking about.
Having a special needs child in general, and most likely a child with any life threatening illness as well, being “aware” takes on a whole new meaning. You have to be aware of everything. Is there an unseen danger in the environment… did I leave the scissors on the counter? Is there anything that can trip her? For many there’s the worry of suction machines, feeding tubes and feeding tubing, oxygen and seizures, meds galore. Yes, we have to keep track of bowel movements, urine output, respiratory status, pain indicators, eye movement-what does she/he want? Where does it hurt? It’s almost dizzying the number and variety of factors parents and caregivers have to be aware of every moment of every day. But, today that’s not what I’m talking about.
Today, I’m going to talk of “BEING AWARE” in the most marvelous way, in a way that only people who know Life may be short are observant. We see the incredible beauty in the most normal things and can appreciate the smallest of the smallest wonders- a glance that makes a choice…REJOICE!; a step…CHEER; a giggle…OMG!!; a breath, when it occurring wasn’t the expected outcome. Miracles, each and every one.
But, wait! It doesn’t just end there. Incredibly, magically, wondrously that awareness just keeps going-beyond the confines of hospital rooms, bedrooms, therapy rooms, lucky arms that hold sleeping, peaceful children. We LOOK! We look at the sunrises and sunsets, we really, really see them- the colors of the world that the hand of Nature has painted across the sky. We can pick out butterflies and scents and do stop to smell the roses, literally. We notice the way the sunshine makes an icicle seem like a diamond. We breath in deep when the salty ocean mist carries the smell of seaweed and sand and sounds of seagulls. We take not one day for granted.
And, when we are doing these things with our children, it’s like getting to experience the world for the first time, each new wondrous thing. We see it not through adult eyes, but through the eyes of someone getting to experience something that we may have become jaded to…and poof, it’s no longer old, it’s all brand new. How lucky are we??
The snow gets caught on our tongues; we don’t mind walking in the rain (ok drizzle); we turn our faces to the sun and open our arms. We catch ladybugs to place them on hands that don’t unclasp and share the tickle of little bug feet and get to see that smile that says “this is so super COOL!” And, music! Watching our children smile, rock and sway to music is joy itself, even if it’s Barney. When I learned that Katelin loved Celtic music, it made my heart soar-finally I could share part of her heritage in a way that was meaningful to both of us. Taking her fishing and talking to her of her grandpa and uncles and seeing her being assisted in sewing, actually pulling the thread, and telling her about what a wonderful seamstress her great-grandma was- these are the stuff of wonder for me.
Yes, in many, many ways Life is hard for all of us. But, I believe, in this one way we are blessed-that we are aware of the miracle of Life all around us, in a way that most people can’t be bothered with. The smallest moment can become a cherished memory or bring us peace in its beautiful simplicity, like when your child, even at 23, falls asleep right over your heart.