You know those online sharables? The little poems or sayings you see on social media and how they get you all up in your feels but then you smile and go about your day. Well, when you have a child with a disability there is a whole new level of feels to get up into because not only are you thinking about how things would be with your typical kids, you’re thinking about how the meme applies differently to your disabled child and everything that means for them and for you.
For example, this is one I saw today. It was posted in a co-sleeping group in response to the usual post about a wife wanting to bedshare with her baby for just a bit longer and the husband saying it was time to “get our bed back” and that this coddling the children thing has “gone on long enough.”
Dear husband,
There’s a life in the future with little faces in photo frames instead of before our eyes, artwork and ABC magnets won’t adorn our fridge, and these leggings I’m wearing right now will be long gone.
There’s a bed big enough, where little elbows and knees won’t prod us in our sleep and only our feet will swing out in the morning.
There’s a vase placed in reach of little arms because there aren’t any, and mugs will daringly sit on the edge of the table.
There’s a bank balance that looks a bit more forgiving, a bag I leave with that isn’t overflowing, and it will only take us 10 seconds from the door to the car.
There’s a free calendar that isn’t packed with swimming lessons, dance classes and muddy sports shoes. And we’ll get to know each other for a third time, before them, with them, and then when only two jackets hang at the door.
There’s a clean car, the only noise is the hum of the radio. There will be no endless questions in a high pitched voice from the back seat, there may even be days we don’t hear from them at all.
There’s a date night with no curfew, my mums not needed for babysitting, and we aren’t sleeping with one eye open waiting for the shuffle of feet down the hallway. A type of freedom that feels heavy.
There’s a house that’s clean, maybe our couch is new, and we aren’t stepping on Lego or toy cars either. In fact there’s not much colour anywhere, remember how we hated all the colour? Remember how it came with so much happiness?
There’s a dinner table that feels big, we aren’t negotiating bites of vegetables or wiping little hands and mouths. But sometimes there’s a knock on the door and the table is full once more.There’s a shower that doesn’t sound like baby cries, a coffee that is warm and my body will be my own. We won’t wear tired the same way but time will have aged us anyway.
There will be hard moments to come that will make these moments look easy, but we’ll remember. We’ll remember the first words, the curls, the “I love you’s” the moments we almost broke, and how we held each other through it. We’ll laugh and we’ll cry just like we did then.
There’s a life in the future and it’s coming for us every day. So let’s get swept up in the beautiful chaos in front of us. Let’s make the future wait a little longer. Because I love this life with you so much, this one right now.
Unknown Author
It’s such a beautiful sentiment, right? (Well besides the part about negotiating for bites of veggies – that’s been shown to be counterproductive but I digress). When you’re in the thick of it – parenting a needy infant or toddler – it can seem like your lives are forever changed. That there will never be an end to the seemingly endless stream of dirty diapers and spit-up laundry, messy faces, fingers poking at your eyes and pinching your cheeks, little legs jumping and climbing on you as though you’re a jungle gym at 3:00 am when all you really want to do is go back to sleep. But for most parents, there is an end. Their child proceeds straight from infancy to toddlerhood, does not stop at go, and continues developing into a preschooler and then a school-aged child who can do vastly more than they could in each stage beforehand.
For those of us parenting kids with disabilities, especially severe disabilities like my Avalon, some of these things may never change. Yes, she will grow and develop and she is always learning just like any other person. But she may always poke me with sticky fingers, even as an adult. She may always cosleep because she’s at high risk for seizures or sudden death at night (SUDEP) and I could never forgive myself if I left her in a room alone and she ended up face down in the pillow and died. While other kids proceed from the ABC song and Brown Bear Brown Bear to Justin Beiber and Captain Underpants or whatever is popular with the tweens and teenyboppers of the day, Avalon may always like Brown Bear. While others move on from babbles and baby sign, she may never talk to us in strings of words. She may always sign “more” when she finishes her spillproof cup of juice and then throw it across the room because I wasn’t fast enough. As much as it helps to have a known syndrome associated with my daughter’s extra genetic material (some people have a disease unique to them or never get a diagnosis), it’s a doubled-edged sword because not only do I get to see what worked for other parents, I also get to see another mother with her 40-year old adult child using a choice board to read the same story books as my 3 year old enjoys and that’s heavy at times. Like the poem said, that’s heavy. In 36 more years when my daughter is 40, I would be almost 80. It’s something we carry and unlike the stress on parents who have a newborn or a toddler who is in the throes of growing when the days feel long but the years feel short and their child is rapidly developing towards a trajectory where they won’t need you anymore, our days are long and our years are long. Our child will always need us. My partner and I will be taking shifts sitting up at night with our daughter not for one year, or two, or three. But till we’re 80. 80. And what happens after that? I don’t even have the energy to think of that because right now, it’s my shift awake.
I know what some of you may be thinking – how can you say that? How can you know what will happen? Don’t limit her. And to an extent, you’re right. All children with Dup15q develop differently but the reality is that it’s a severe disability. Over 50% of dupers have seizures. Over 50% are nonspeaking. Many who do speak are echolalic. All or almost all of them are autistic. Almost all have ongoing sleep problems of a severe nature. Almost all have what are known as “behavioral problems” but what is really our collective failure as a society to develop better ways to understand and relate with them. To my knowledge none live independently as adults. As much as I want to assume competence and when I’m interacting with her, I do, I also don’t want to veer into toxic positivity or the kind of “special needs” parenting where people have their blinders on completely to the fact that their child has a disability and may always do things differently. The kind where people don’t sign with their disabled babies because “any day now” they’ll start speaking words and they don’t want to “hurt their chances” or “make them feel different.” And who knows? It is possible we will develop some amazing way to better communicate with these kiddos or come up with some kind of treatment to remove the negative effects of the extra gene in our lifetime. The life expectancy for Down Syndrome used to be 10 and it jumped to 60+ when we stopped institutionalizing people and treated their heart problems and other medical needs. Maybe something similar could happen for Dup15q. Maybe. But looking at hope for future changes feels like not accepting the person that she is now and I don’t like how that feels.
I know it’s not really helpful to compare but it’s hard not to sometimes when it seems like folks such as Dear Husband are complaining bitterly about climbing a mole-hill with a lunchbox when we’re climbing a mountain with more strapped to our backs than any one person should be required to shoulder, and most days with a smile on our faces. While Dear Wife can’t put the mug at the edge of the table now, we can’t put it there forever. In fact, those times when we actually get to drink the coffee hot are rare. And don’t get me wrong – most days, it’s worth it because we are paid in extra lick kisses and cuddles. We get to be part of a whole world that most people don’t even know exists. While the other moms are writing sharables about their kids going off to college, we are sitting on the couch with our adult child’s head in our lap watching a movie. But some days we see these social media sharables and wish for just a moment that they applied to us too – that our kiddo wouldn’t have to deal with seizures or learning disabilities or the seeming inability to sleep during the hours of 2:00 to 7:00 am and we could just chuckle along with the rest of you about how the days of sleeping with one eye open and stepping on legos would soon end.
So Dear internet Husband that doesn’t know me or care, let those babies cosleep with your wife. And climb in yourself and snuggle them too. For you, those chaotic days will end. And maybe somewhere, some internet stranger could just for one second think about those of us living with a different reality. It’s not that we want to complain, to be seen as martyrs, to lose our identity to our disabled child like the “autism moms” or anything like that. Sometimes we just want to be seen and feel included in some way other than the patronizing “God chooses special moms for special children” memes.
And to the other moms, dads, and nonbinary parents out there who are STILL stepping on legos, still drinking cold coffee, and still sleeping with one eye open long after the age when parents of typical kids have stopped worrying about SIDS, I see you. And I raise my cup of cold coffee to yours.
