I’ve woken up with a small case of the Monday morning blues. Despite a gentle breeze playing with the curtain near my bed, the sounds of spring, fresh and dewy, I felt a heaviness in my chest in the first waking moments. Pull it together, Nat, I thought, you live a charmed life. I went about the morning, feeding the kids and getting them sent off to school, stacked the dishwasher, made a pot of coffee. I still feel a bit out of sorts.
Saturday was Morgan day. A day scheduled to get all the chores that pertain to my daughter’s ‘upkeep’ done. We bought new pants, we had her hair done. These might seem like innocuous errands, but in our house, these are dreaded events. Morgan refuses to try on clothes and so getting anything new requires several days worth of advanced notice, multiple threats of punishment and bribery (I’m a parenting marvel). After new jeans have been acquired, we then drive an hour and a half to the Curly Hair Institute, where I drop $200 to get my teenager’s mane cut. Handing over this kind of cash for a haircut makes me throw up in my mouth a little. But not employing a specialist results in hours of tears, irrational screaming (by both Morgan and myself), and big chunks of dirty blond curls being haphazardly chopped off just so that her hair can accommodate a brush. Morgan has the thickest hair you’ll ever see. So thick in fact, that when we arrive at the salon where thick curly hair is presumed to be commonplace, the stylists spend several minutes oohing and aahing at its magnitude. Cutting requires consultation by several people, and almost two hours later we escape with Morgan resembling, Shirley Temple. The nightmare has been dealt with for the next three months.
After a pitstop at a friend’s house where we are fed and watered like royalty, we dash across town (an hour and forty-five minute dash), to Morgan’s newest venture— Special Olympic Soccer.
My daughter, for those of you who are new to my world, has an intellectual disability.
It’s hard to get her involved in sports because, though she is physically able and appears neuro-average, she can’t follow instructions the way her peers can. We’ve tried to put her into regular dance classes and gymnastics etc. but she is invariably asked to leave, or they demote her to one of the younger classes. Morgan is not clueless, she is aware when she is the oldest kid in a class by four years.
Special Olympics programs are a mixed blessing for us. Most importantly, they are a godsend because Morgan gets to participate in physical activity without exception or exclusion. Participation is an opportunity to make friends, an opportunity she doesn’t often have.
I confess that sometimes, in moments of weakness, full of self-pity and fury, I wish that Morgan had been born with Down Syndrome. Or Cerebral Palsy or some other visible disability. Then we would have been prepared, we would have had that moment. The moment I’m talking about is the post-birth death: when parents see in an instant that their child will not be ‘normal’, the time when their hopes for their baby die. It’s an unimaginable, horrific time, but… at least those parents get to mourn, and then that mourning can birth new hopes, better plans. You move forward with your eyes wide open.
How horrible, you’re thinking. I know, I’m horrible.
You see, Mike and I, we get to have those moments, those death moments, in increments. Just a little bit at a time; not enough to slay us, just trace amounts of grief that come like a thief at unexpected moments. And those moments are not shared or witnessed by anyone. Not even with each other. Morgan’s parents have lost hope and then found faith at different points in her little life. We’re never grieving together, we’re never trusting at the same time.
Saturday held a little death knell for both, Mike and I. We said goodbye to different hopes. I watched as my husband ground his teeth, paced on the sidelines and then slowly surrendered while his baby girl ran around with people of varying ages (some in their thirties), doing tasks that he thought were beneath her. She is more physically able, could most likely compete for a regular team, he argued. But she won’t. She won’t.
And, Morgan’s Mommy? Well, I said goodbye to the hope of relevance.
I spoke with the mother of a young girl, a beautiful, leggy blond bombshell, who ‘thankfully just found employment’. She’s working at MacDonalds, wiping tables and sweeping floors. At least she’s employed, the mother said. It’s the best we can hope for, she admitted.
The young woman has the same diagnosis as my, Morgan— can’t read, or count, can’t tell time or remember the days of the week, she’s outgoing and desperate for independence.
Do you notice the disabled person wiping the tables at your local fast food joint? Do you smile at them, talk to them, value their presence? I don’t. In all honesty, unless they talk to me directly, I don’t even see them. I overlook their humanity. And I’m a kind person. I don’t think overweight people are less intelligent, I don’t underestimate people based on their gender or race. I don’t. Old people and ‘mentally handicapped’ people… I totally devalue their worth in society. At least, I used to.
Our society, though very forward thinking, still lacks the consciousness necessary to see the relevance of disabled people. At best, we understand a moral responsibility to care for them. But accept their presence as relevant, even needed in our communities? No. We haven’t gotten there in the evolutionary process yet. One day, when I’m not dealing with the debris of death, I’ll give you a little look at my thesis regarding how important neurodiverse people are in society. Today, I just need to clean up the mess of the this latest disillusionment.
Morgan very likely will be one of the ‘irrelevant’ people in society. Did you know that you forsee that your child will be accepted? Well you do, you unconsciously anticipate the world making space for them, a valuable space, a respectable space. On Saturday, I came face to face with my very natural expectation, and I said goodbye to it. And the grief of that expectation is littering my thoughts today.
I anticipate people being offended by my honesty. How can I say those things about my own child? Where’s your faith? You’re envisioning a terrible future for your child. Or perhaps, you’re sick of hearing about it all— stop going on about your disappointments.
I’ll just leave this here: Don’t judge my story by the page you happened to walk in on. You don’t know me, or my family. Don’t be annoyed by my sporadic confessions of woe. And, please, don’t tell me everything will be fine. Fine for whom?
Today, after I’d posted this blog, I’m going to pull myself towards myself and move on. Little deaths are short lived. We’ll have them again— the older Morgan gets, the more frequently we’re faced with her disabilities. But the other side of death is a new beginning; we get to rethink her future and ours very often. Most people don’t have the impetus to change, we’re blessed to have change built into the DNA of our family— Morgan, our beautiful, curly hair mover, and shaker.