When I think of the term disability, a huge basket of a term, I think of the duration and breadth of my son's life. The term encompasses a spectrum of abilities—the tiniest difference between some and the vast chasm between others. Temporary or fixed, compensated or not, improving or declining, born with, born without, developed or occurred acutely. The degree to which you are “disabled” is the degree to which you must depend on others to function in this society and, in some cases, to survive. The scope of the term disability defies boundaries, yet we define it. In doing so, we create blind spots.
Luke's daily life, and ours, is profoundly affected by his disabilities. He is 25 years old today and lives with severe neurological impairment, secondary to a hypoxic event at birth. His large green eyes do not “see.” His long arms and legs have no volitional movement, save a swat of his left hand. He cannot speak or understand words, but his hearing is acute. He is cognitively stalled at the age of a three-month-old. He is carried from place to place, positioned in chairs, a bean bag, the sofa, and his bed. Everything he cannot do is done for him: scratch an itch, retrieve an eyelash, dress and undress, bathe, toilet, spoon-feed, reposition so he'll be comfortable. His body experiences all the plights of one that does not move. His internal organs have readjusted themselves to find room in a body that continues to twist on itself. He gets his teeth brushed, his hair combed, and his face now shaved. He cannot be left alone, ever. Like an infant, if his most basic needs are not met, he cannot survive.
His fragility is, in essence, our fragility. This precarious balance of his needs, ours, and those of our other sons can be upended by many things. An illness, an injury, a caregiver who can't show up, a job loss, a power outage, car trouble—an endless list of saboteurs. Sometimes an adjustment must last only a short time; sometimes it becomes a yet more fragile norm.
It seems, in many ways, that the better we appear to “keep up,” the more marginalized (unseen) he is. His care doesn't end at a particular time of day or week or month. We have cobbled together several part-time jobs to create full-time jobs with flexibility. While that flexibility can look attractive from the outside, there is no insurance, no benefits, retirement or advancement. The pay is less and they are the first jobs to be cut.
If Luke is our job, so to speak, there are also no sick days, holidays, vacation days, or “mental health days.” We have cared for him while ill and injured, or until we simply cannot. By some miraculous grace, we have tag-teamed his entire life. We are a “teepee” couple, reliant on each other's skills and strength—and those of others—to continue. Any imbalances, and there have been many, can throw off the fragile equilibrium. We know we should “take care of” ourselves, the mantra for caregivers. If it were easy to do, no one, ourselves included, would lament the vulnerability of disability.
Now as he turns 25 we deal with yet another layer. Empty nesters and never nesters are moving beyond our radius and we cannot join them in their newfound freedoms. Our shared experiences, the foundation of relationships, have begun to dwindle. Many of our friends have lost their children with “special needs” and no longer deal with the day-to-day impact of someone else's needs usurping your own. They understand, for sure, but they can move on.
At this juncture, like many junctures before, we try to take stock. We try to increase our supports, minimize extraneous efforts, and firm up a Plan B. But this, we find, gets harder, not easier, as he and we age. The pace we have to limit ourselves to, the details we must figure in to every decision, the lack of spontaneity do not fit the culture we live in. Occasionally, someone will ask the question of last resort: Would he notice if you put him in a nursing home? Usually this is someone I know cares deeply—and yet I also know they might not board a beloved pet at a kennel. I have to take a deep breath and bite my lip before I speak. This is representative of the blind spot.
Would he know he is not in his home? Oh yes, he certainly would. Would he miss the sounds of his life in it? The futon in his peaceful room, blanketed and foamed for his crooked body? The “throne” in the living room, where the household happenings occur; his nightly bath and the pace of his day? Oh, would he. Would he miss his walks, his “movies,” his trips with us to Starbucks and the hot tub at the Y? His former caregivers and friends, who always know where to find him? Oh, he most certainly would.
Maybe more so, he would miss his dad and the way he picks him up and carries him everywhere. Two bodies that have started to look like one. His dad who shaves him, cuts his nails, dresses him, does all of his morning care and anything that happens overnight. Or maybe he would miss me feeding him breakfast or putting him to sleep like I have virtually every day and night of his life. Would someone else take the eyelashes from his eyes and kiss him gently every single night? Will someone make sure his clothes are not bunched up, his face is clean, and he changes position frequently enough to be comfortable? Will someone be patient enough to listen for his voice to “say” what cannot be heard?
I already know how much he misses his brothers and people with whom he has formed a bond. His IQ may have been devastated, but his EQ has not. He has lived 25 years on this earth and his experiences are valuable and visceral to him. His life spent in a body that cannot function alone has made him stronger, not weaker. It is his patience that has made us better with our own. It is his tenacity that has taught us how to live day to day and in the moment. It is his inherent kindness that has combatted our weariness. And it is he who has demonstrated that vulnerability can be a state of grace.
If we ever had to hand over his care, it would not be for lack of love, want, or ability. It will be some tragic event that I pray every single night never, ever happens. Meantime, blind spot that it is, it is our spot.