My son did not win the cosmic lottery when he ended up with me for a mother, and this family for his family. Not that I’m entirely evil, or we model ourselves after the Manson Family, but he was born into a land not filled with child friendly bubbling brooks and green meadows alive with cheerful grasshoppers and fluffy bunnies. He has never been wrapped in that beautiful, innocent, carefree cloak of childhood we all so desperately want to provide for our children – a world where the greatest traumas relate to spending too much time on the bench during the soccer game, or having someone steal your new bike out of the driveway.
Rather, our homeland more often resembles the mountains of Afghanistan — harsh, isolated, cold, fraught with peril. Shells exploding overhead, terrain filled with hidden landmines. Sometimes, we do manage to pack up our things and migrate closer to the ocean shore. It’s quite lovely there and we’re always happy to arrive in this more habitable climate, but still, even by the ocean’s edge, there is this wild and ceaseless drumming of the waves on the sand. If you stand too near the incoming crests, the ground beneath your feet literally washes away and your can lose your balance. Topple. And always, there is the knowledge that out in that water, somewhere lurking, there are girl-boy-woman-man-eating sharks, and unpredictable undertow that can sweep you out to sea when you thought you’d just be playing in the shallow water.
This is where my son has passed through his Baby Bug Boy and Uncle Fester phases, on to a startlingly willful, tow-headed toddler, then a mega-energetic and uber-verbal boy, and now into a lean, lanky, and edgy tween. This landscape, largely in existence because he is the brother of a chronically ill and intellectually disabled older sister, presents some significant challenges to trying to raise a sweet and self-confident boy. On the glass half full side, it certainly provides numerous opportunities for life lessons on courage, compassion, perseverance, empathy, unconditional love, and patience. But these lessons can be very unpalatable when you are two and rightful feel you should be the center of your parents universe, or when you are six and reading is not coming easily to you and you are frustrated, and your teachers are anxious, and as much as your parents deeply care and want to help you, they need to be at the hospital with your sister who is in intensive care.
My sweet boy. My gorgeous boy with a heart full of love and a smile and laugh that ignites fireworks in my soul. I wish I could give him, and his amazing and brave sister, a kinder life. I wish I could heal all that is bad and painful and just way too hard for any child to endure and kiss it all away. I hate that my children have always known so much about hospitals, dialysis, recovery rooms, chemo therapy, feeding pumps, and the value of an MRI versus CT scan. Or that when my daughter pulls out her g-tube, my son knows to calmly coach her to lie down so the contents of her stomach won’t trickle out on the floor, hold the popped tube in the hole in her belly as best she can to keep the opening from closing, and runs to get mom or dad to insert a new tube.
He tries so hard to patiently endure his sister’s inappropriate comments, tolerate as cheerfully as possible her excessively loud, repetitive and enthusiastic speech, and most challenging for him, maintain his cool when she pokes and picks at him and touches him when he’d prefer not to be touched.
They are, after all, siblings. So that means they act just like normal siblings. They fight. They argue. They fuss at each other. They slam doors on each other. But they also can be incredibly sweet to one another. Support each other when injured or sick. Cheer each other on to triumphs. Mostly though, they fight.
My son will undoubtedly leave this land someday with a double tractor-trailer load of baggage. The contents of some of those bags will likely make me wince and want to go sit in a corner and sob for a few successions of, say, eternity. But already I see he’s packed some of those suitcases with truly cool and shiny things, like a heartfelt empathy for anyone, young or old, who is living with a physical or intellectual challenge. Although he might strike out at his sister who lives with similar challenges, as, again, she is his sister, he is drawn to anyone, anywhere who might need a bit of help. As we strolled down a sidewalk in New York City not long ago, my son noticed a man in a wheelchair about half a block ahead who was having difficulty maneuvering over a raised edge in the cement. He picked up his pace, yelled over his shoulder that he was going to go give him a hand, and took off to offer a nudge of the chair. He never, ever fails to offer his decrepit mother his shoulder for support when we approach a steep hill, staircase, or even the most gentle of inclines to descend. I never need ask. He sees me and my lousy knees beginning to inch my way downward, and he’s cheerfully there. During summers spent at our neighborhood pool, he makes sure to hang out and play around in the water with the various members who have intellectual disabilities. And when an extraordinary young friend of ours was facing her final days after a lengthy battle with cancer, he said he wanted to sleep on the floor next to her bed so he could help her if she needed anything. He spent time playing with her when we would go to visit, talking and laughing with her like he would with any friend, not seemingly phased by the physical transformation she’d undergone as the disease progressed. He just loved her, looked her in the eye, and enjoyed her glorious company.
In all of these situations, he offers himself respectfully. There is no condescension or pity. It is clear he sees each of these people as wonderful, valuable souls worthy of respect. He understands they have been presented with a harder row to hoe on this journey, and that it is only right and fair that he use what he has, what comes easily to him, to help them break ground, pick rocks out of the soil and cast them aside whenever he can.
So when my son, who himself is only human, so tragically imperfect like all of the rest of us, is being absolutely impossible, driving me to the edge of sanity – no, over the edge of sanity, I try to remember all this. I remember the unforgiving land where he has been raised. I try to imagine what all this must have looked like through his eyes over all of these outrageously zany years. What must a 3-year-old think when he watches his dad pin his sister down so his mother can stick a needle into her leg every day? How must it impact a 7-year-old to have a feeding pump line kink multiple times a night setting off an ear-splitting alarm that generates quick parental footfalls in a dark house? Or all the times he returned from school to a home where his mom and sister were not, because we were in the hospital, and he and his dad would need to jump in the car to bring clean clothes or food or books to the hospital instead of playing catch or riding bikes? And then there was the time his sister picked open her new kidney transplant incision in the middle of the night and her sheets were splattered with the redness of fresh blood and his dad scooped her in his arms to rush her to the emergency room. How well could he focus or be expected to behave at school the next day?
Ah, the craggy mountains where we sometimes perch. Life can be awfully tough here. But from way up high like this, we also get to see some stunning sunrises. We’re allowed to steal a look at a special vista few others get the opportunity to see. I think that is going to make all the difference, for my boy, and for all of us. We know some important secrets. We’ve learned to truly appreciate these little, amazing, ordinary things – like going to sleep and waking up in your own bed, being able to give everyone in your family a kiss goodnight, and eating cereal out of a bowl in your own kitchen. We know how important each hour, each day, actually is.
I believe the love we all have for each other will get us through mostly in one piece. Oh, there will certainly be scars we each sport for all time. There is no plastic surgeon, no therapist, on the planet skilled enough to successfully smooth over all these beauties. But that’s okay. We’ve learned to revel in them. Battle scars. Each scar was stitched together with some nearly unbelievable story. We enjoy yanking back clothing on occasion, much like the guys in the drunken boat scene in Jaws, to show off this or that scar to people who stare at us, slack-jawed and disbelieving.
So, this is the land where my son is growing to be a man. He will certainly be an interesting man. He’ll have astounding depth and extraordinary compassion, be tough and able to bounce back with power like a super ball, and he’ll have some truly killer stories to tell his dumbfounded friends.