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No One is More Aware of their own Mortality than a Mom to a Disabled Child.

distorted sense of wonder special needs mom woman pondering and drinking a cup of coffee
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The Distorted Sense of Wonder that only a Special Needs Mom knows.

Oh, Little Buddy….(that’s our nickname for him, always has been since he was an infant)…we are wrapping up an almost-two-week break with each other. With the festive holiday season over, this damp rainy day…I’m looking at you this morning with a distorted sense of wonder. Perhaps it’s a bit of cabin fever, perhaps it’s because, during the past two weeks, I’ve had time to think about our daily activities (or ADLs as your teachers and therapists would call them…I’m not even allowed a bit of normalcy in that). In the hustle and bustle of school days, I’m in such a hurry that I don’t have time to wonder about these things. I guess that’s a good thing.

With your brother, I watch him grow and play and mature at a rate that is so much faster than your progress. With each new interest he has, I wonder what his chosen vocation will be. I wonder if he will marry. I wonder if she will be like me, or totally opposite of me. I don’t get to wonder that with you.

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I hear you awake in your room in the morning and I go to get you to change you. You’ve unfortunately wet through to your jammies and your bed, and like all the other days, I dutifully and patiently change you and your bedding. I have to wonder…when I am gone…will you be able to do this yourself? Will this have resolved itself? I wonder if you will acquire the skills to not do this. I wonder if your caretaker, after I am gone, will they be as quick to change you…or will they let you sit like this, in the filth, until they get to you. This, I have to wonder.

I put you in the tub and patiently and dutifully clean you and do hand-over-hand to help you learn to do it yourself. I’m your Mom, so while it’s not one of my favorite chores, I don’t find it disgusting or repulsive…just a task that needs to be done. But who will do this when I am gone? Will they be as patient, as accommodating, as understanding….or will they find it so repulsive that they don’t do a thorough job? This I have to wonder.

I rinse you off with the shower nozzle, then scrub the tub. Then, I fill it back up for you to play, because you enjoy it so much and we have the extra time this morning. I wonder….will the next person notice this? Will they allow you the extra time to do the little things you love? Or will they rush you through all the ADLs because they have a schedule to stick to? This, I have to wonder.

You play in the tub, and you love to drink the water. This is why I took the extra time to scrub the tub because I know that you might do this. I stop you since it’s not healthy to drink bathwater. I wonder, will the next person do this? Will they try to teach you to not drink bathwater? Will they clean the tub? Or will they let you drink water out of a filthy tub? Maybe they will hardly bathe you at all…due to them hating the task. This, I have to wonder.

I get you out of the tub and something upsets you. Perhaps it’s just that your water playtime is over, though I’ve tried my best to make it a smooth transition. Families like us…we’re not allowed to just move from task to task, activity to activity…we have to transition. But whatever it is that upsets you, you hit me and do a quick burst of raspberries (spitting) and it catches me off guard. I sit up straight, on the bathroom floor, and I tell you “No, no spit. No hit.” I have to initially stop myself. I have my own fight-or-flight instincts that I must control every day. When someone hits you in the head, sometimes your first instinct is to want to hit back. I have to deny myself my own instincts and I do it because of you, Little Buddy. I know you love your Mom. You don’t want to hurt me. But what will the next person do, I wonder? When you are an adult and I’m long gone…if you hit that person, will they also talk themselves out of their own instincts…or will they react and hit you back? This, I have to wonder.

I’m drying you off and helping you to get dressed. Lots of hand over hand, lots of prompting, dutifully….as I have been trained to do. I wonder, will you accomplish this skill, this task of dressing yourself…will you do that before I am gone? I wonder about this. As you’re standing here, naked, vulnerable yet so trusting of your Mom….will someone take advantage of this? After all, you are among the most vulnerable, you are not able to point the finger and say, “It was this person. They did this to me.” This one scares me the most and keeps me awake at night. It makes me want to be with you 24 hours a day, so I can make sure that this doesn’t happen. I wonder how many days I can be with you to prevent this. How many 24-hours do I have left, to give you a once-over every morning and every night, to make sure there are no unusual marks or bruises? I wonder.

I get your toothbrush and we sit on the floor to brush your teeth. You resist, as you sometimes do. I prompt, I guide, I coerce and we get it done. Will the next person be this patient, I wonder. Or will they ignore this task because it is difficult to do?

We go to the breakfast table and I sit your breakfast in front of you. It’s one of your usual meals, something I know that you like, that is healthy, that you can eat without choking. Will the next person be this careful? I wonder if you will learn to chew before I am gone. Will all the people in your future know of your choke-risk, I wonder. You never ask for food. I wonder if you will be well fed after I am gone. Or will they let you be hungry and then throw tantrums because you are so hungry….because that is how you communicate sometimes. I wonder.

You eat, with some prompting. Will the next person prompt you, or will they let you sit there and not eat? I wonder this. Will the next person notice the meals when there is more food on the floor and table than what you have eaten…will they lose patience at having to clean this up? Will they give you a second serving because you must still be hungry. I wonder. I don’t get to have leisurely meals with you….every meal, every action, every day…I am teaching and training you. So skip one means missed opportunities. I wonder how many more opportunities that I have with you, to make you more independent.

And so our day goes on….we do our daily tasks, and for some reason, how much assistance you need at age 8 is on my mind. Maybe it’s because I just completed yet another Vineland for your upcoming RR and IEP. So many zeros. Maybe it’s the holiday break and the weather, maybe it’s the recent death in our extended family that once again reminds me that we are all mortals.

We’re reading books, we’re doing light play…left to your own devices, you would do nothing all day. I wonder how many days of doing nothing are in your future. Will someone find you a hobby, find you an interest and will they see to it that you get to do it? I wonder. I know you can do things. I know you have much to offer, if you dig deep and find it, it is there. I wonder, will the next person take the time to find your gifts?

A former mentor once said to me, “That I can outlive my disabled child by just one day….that is my wish.” What a rotten thing to have to wish for. To wonder about. But we must. Those are the cards we were dealt. But it’s also the fuel for what inspires me….what makes me want to make the world a better place for you and other kids like you.

I’m not afforded the luxury of whether you want to be a fireman or a scientist when you grow up. I’m not afforded the luxury of wondering what your wife will be like, or whether or not you’ll want to live near me as a grown-up. Your brother still mentions things like “When Kevin is a daddy…” Oh, how ignorance is bliss! I have to wonder, what it will be like…the day he realizes that it is my dream that he is very involved in your life. Will he resent the pressure, I wonder. Will his new wife and family be so understanding, so patient, so optimistic? Or will they drive him further from you, because they don’t want the burden or are afraid? I wonder. I wonder if he will feel burdened, despite my best efforts to not burden him.

I don’t get to wonder if you’ll have kids. I don’t get to wonder if you’ll be hiding tattoos from me as I did from my parents. With you I have to lobby, I have to call legislators, I have to have difficult conversations with people I know and people I don’t….try to change their perception of you and kids like you. I have to nag. I have to make my voice heard above all the other voices and noise and important issues. I do it for you.

Last week on the news, they kept mentioning this study, on the actual scientific therapeutic value of hugs, and how people really need to be hugged each day. Who will hug you when I’m gone? This I wonder.

But one thing I don’t wonder….is if I’ll ever stop. Until my last breath, that is my promise to you, Little Buddy.

{author’s note: originally published in 2015}

Author note: I’ve been accused of being “ableist” in this post, which is something I often preach against. I am not mourning who he is, which would be ableist. I am mourning our society’s lack of supports and services for people like him. Truth is, I cannot live forever and he requires a tremendous amount of support to live. As our society is currently set up, he cannot live independently. I will continue to celebrate who he is, until my last breath.

distorted sense of wonder special needs mom woman pondering and drinking a cup of coffee
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