Long, skinny limbs outstretched, mouth open, breathing loud. Not quite a snore. His own sounds. It was family movie night and of course, Ryan lasted half an hour before he was asleep.
I just stop and stare sometimes. I drink in his innocence, his sweetness, my boy who’s both so polite and a pain in my heart.
I think about his brain, all wired wrongly thanks to missing parts of chromosome 15. I think about his muscle tone, so low, so weak, contributing to his flexibility and small frame. How his muscles had to be taught to move, activate and strengthen. Until at last at age 3 he walked. FINALLY. On his own. Stumbled really. Kind of had his own Ryan-gait-and-rhythm of movement.
I think of his little hands that still cannot give a firm, strong handshake nor tie a shoe. Straw-like fingers with nails that grow too fast, and must be cut often. The fingers that still struggle to close buttons, snaps, and zippers. And he is 12 years old now.
I think of blue eyes gazing out upon the world, sometimes in his own world. There are thoughts running through his mind, but unspoken. What would Ryan articulate if his brain allowed him? What would he tell me about his feelings and needs instead of perseverating on book series and The Wiggles, or whatever his latest obsession is? I wonder.
I look at him and think how tortuous it must be to have the level of anxiety he has. To be so riddled daily with insecurity about his next meal or snack. To be so unsure of whether everything will change in our day even though we have discussed it 5 times (or 15!), AND it’s written down as a visual cue and physical reminder.
Is he sad deep inside because he is somewhat aware of his differences from Luke and Kate or classmates? Or is he blissfully still ok with just who he is? Some of the time he does seem happy to be him, as long as there is food, and an endless array of people to answer questions and engage him patiently.
When I look at my sleeping prince, I am overtaken by an avalanche of love and compassion. For a moment, ever so brief, I forget about PWS, I forget about his anxiety, I forget about the “what ifs” and the wondering how many years we will have with him.
I just see the one child of mine that everyone says looks like me.
I just see his beauty.
I just see his grateful heart.
I just see God’s gift to me.