My son, Luke, recently turned 25 years old. We celebrated his birthday as a time of reflection and gratitude for his life lived well beyond his prognosis at birth. He lives with a severe neurological impairment, a brain injury suffered at birth, a disability.
Disability is a huge umbrella of a term, categorized by terms like temporary, improving, chronic or progressive, to name a few. All these terms create a blind spot in our society. Our family can see this blind spot because we live in it with Luke.
I like to think that our son lives with a spectrum of abilities. However, the degree to which someone is “disabled” is the degree to which they must depend on others or accommodations, to function in society. For some, like our son, it is the degree to which he must depend on others simply to survive.
His large green eyes do not see. His long arms and legs have no voluntary movements. He can hear, but not speak or process language. Cognitively he is like a 3-month-old. Everything he cannot do, we do for him. We dress and undress him, feed him, brush his teeth, bathe him, move him place-to-place. In the morning, after his chest physiotherapy, diaper change and dressing, he is brought to his mini-Papasan chair for breakfast. He will be spoon fed there again four times during the day. He will be repositioned for comfort throughout the day in his futon, his bean bag chair, his couch or his special needs stroller.
Despite these efforts, his body suffers the consequences of one that does not move. His internal organs try to find space as his spine twists. His elbows, wrists, knees and ankles have lost their flexibility and rest curled to his body.
Like an infant, he can never be left alone.
Our son’s fragility is, in essence, our fragility. It is a precarious balance, his world and the rest of the world we have to function in. Anything can upend the balance: an illness – his, ours, our other sons’, our parents’ – a caregiver that can’t show up, a job loss, car trouble. It’s an endless list of saboteurs.
As a family, we have cobbled together several part-time jobs to create full-time employment and flexibility. His 24/7 needs require it. While the job flexibility may look attractive from afar, there are no benefits, no insurance, no retirement or possibility of advancement. Our paychecks are less and our jobs are the first to be cut. Our job with him has no weekend, no sick day, no holiday.
By some miraculous grace, we have been able to tag-team his entire life. We are what they call a “teepee” couple, fully reliant upon each other. We have aged as he has aged. Now that he is 25 and his brothers are out of the house, we are not experiencing the empty nest of our friends and families. They are moving beyond our radius and slow, deliberate pace. I know we are not alone in this blind spot, but it can feel that way.
Occasionally someone will ask the question of last resort: “Would he notice if you put him in a nursing home?” This is often someone who cares deeply, but would not consider putting their dog in a boarding kennel. I bite my lip and take a deep breath before answering. We are in their blind spot.
“Would he know he is not in his home?” Oh, he certainly would.
Would he miss the sounds of his life from his throne in the living room? Boy would he. He would miss his walks, his movies in his room, his trips with us to Starbucks and the hot tub at the YMCA. He would miss his dad carrying him everywhere – the way he shaves him and cuts his nails. He would miss me feeding him breakfast every day, taking stray eyelashes from his eye and kissing him every single night before I put him to sleep. He already misses his brothers, gone from the house and those with whom he has bonded. His Intelligence Quotient was devastated, his Emotional Quotient was not.
How could we bear a single day without his love, his patience, his courage, his trust and oh-so-gentle nature? At the outset, we did not know that vulnerability could be such a state of grace.
If we ever have to hand over his care, it would be due only to some tragic event that I pray every night, never ever happens.
Yes, this blind spot is our spot.