1,333 words
10 minute read
Well, I do it by doing it...because even if I've written about parent grief before, it is still a thing. In an article I won't link (because why) a mom with a book coming out had an excerpt of it published. I've searched the book on a couple of platforms, and I'm willing to reserve judgment because it does seem possible that as a whole, it might be beneficial for nondisabled parents just entering parenthood of a disabled child. I will say - this article didn't do the author any favors.
'UNTHINKABLE':
This author's child was diagnosed with CP. The same as my sis and I were decades ago, around 18 months old. But this mom calls a diagnosis of CP "unthinkable". Why? Why is it unthinkable to have a child with CP? We have always been here:
We have always been here. But we are not seen. We're not raised in institutions anymore, but in homes where we are pressed to be as "normal" as possible. Posed with our legs in positions unnatural for those of us with CP. Those of us who can pass use all our energy all the time to do so. And those of us who cannot...well... We try...and try...and try...to be good little nondisabled kids, even though we can't. And regardless of if we are the child who can pass or the one who cannot, we can feel family members' unresolved grief.
'A DISASTER THAT WOULD DESTROY THE REST OF OUR LIVES':
All I know about my sister's and my diagnosis is this quote, from a relative:
“From what I recall, it was rather open ended. They really didn’t know what to expect. I don’t remember that there was anything said – here’s what to expect. What I seem to remember is that it would be unknown until you got older what your prognosis would be. You were really the first generation of survivors at that stage of prematurity." [My sister and I were born at around 31 weeks gestation in June of 1981 at 2 pounds 4 ounces and 2 pounds 8 ounces. Previously, no babies as small as we were had ever survived at the hospital where we were. We were the first they were able to save.] "Therefore there was not a lot of data to draw on. Plus, CP being brain damage due to the lack of oxygen, what are and how much damage was unknown. There was no way to know, so really hard to hand out here’s what to expect. To be honest, your health issues were the big concern. Not getting sick and staying out of the hospital.”
The thing is, whether a relative remembers everything, or whether they've blocked it out, we can tell. We internalize how you feel about us. If you feel that having a disabled baby (or babies) will destroy your life, we take that personally. It takes a while for children to grasp subtleties and, more than that, our diagnoses of lifelong disability are an inextricable part of us. Something that defines and shapes who we are.
If our family members (who are supposed to love and protect us) feel that CP (or another diagnosis) has destroyed their lives - we feel like we have destroyed your lives. Because, if you take CP away? I guarantee you, you'd have a different kid altogether.
'WHAT I FELT ENTITLED TO':
This is a really important distinction. Because, when nondisabled parents talk about grieving a disabled child's diagnosis, they are often grieving the loss of this. To put it more gently, it's grieving expectations.
But children (yes, even those of us with disabilities) are our own people. We have the right to our own dreams and goals and to determine what we want those to be. We aren't property you deserve to be given, disability-free, because of reasons. We are human beings. And we can't help the circumstances of our birth. We're here.
We deserve to feel loved. And that is a really hard thing to feel when our family members are feeling sad they didn't get the 'everything looks normal here baby'. (No, love is not implied. Love is action. Love is your face lighting up. Love is unconditional positive regard. Love is seeing your disabled baby as unique because they are!) No, they won't experience the world like you. Yes, some things will be harder. But they probably won't be the things you think...
MILESTONES / 'INCHSTONES':
No need for cutesy euphemisms. Our milestones are just as valid as nondisabled kids'! We reach them in our own time. My sister took her first steps months after our second birthday. I didn't walk until I was four years old (with adaptive equipment - I've never been able to walk without.) Guess what? It's still a milestone. A year or so later, when I took my first steps with crutches? My grandparents documented that. Just like my sis's smile is captured in pictures as she took her first steps.
And I know there's a lot of focus on walking and other physical and developmental milestones. But there are ways to cope. Like, LAUGHING AT THE “NEVERS” (OR THAT TIME I DEFACED MY SON’S DEVELOPMENTAL QUESTIONNAIRE) and / or making a video like Simeon's First Wheels, celebrating your disabled kid's own milestones.
'IF WE DIDN'T HAVE A CHILD WITH A DISABILITY...HOW MUCH BREEZIER WOULD LIFE HAVE BEEN?'
We feel this, too. I know I said it before, but when you haven't dealt with your unresolved / uninformed feelings around disability we feel this! And we internalize it.
Anytime, we went out as a family and something happened? Someone made a comment about where we were parked, or why I was in a chair, or even letting me know that I had "more of a right than anyone else" to be someplace? I automatically took that in, and thought this exact thing:
"I shouldn't be here. I shouldn't be with my family right now. If I weren't here, this wouldn't be happening and they could just have a nice, normal time."
You don't have to say it out loud - that you prefer your nondisabled child - we know.
You can tell yourself, "It's just a thought," and that "Everyone compares," or "thinks of how life could be different," and that is the truth...but it's also dismissive of the harm it does to disabled children who grow up in these households where we know we are not the child that was wanted or even dreamed of...because we are merely tolerated....sometimes not even that.
Tolerance isn't the same thing as love. It just isn't.
'BROKEN CHILD SYNDROME':
Most of the people with disabilities I talk to share about having the very real consequences of this mentality forced upon us. Put through surgeries and other medical interventions, because people in our lives can only see what's 'wrong'.
But we are not the broken ones, friends.
The best thing I've been told by a nondisabled parent about grief is: "Can we talk about this more? I want to understand your perspective..." and "I'm trying to understand, please be patient with me."
Nondisabled parents, please keep trying to understand. Because your child with CP is going to grow up. That child might Google themselves someday and see the proof that maybe they always felt inside - that they were nobody's first choice.
But I hope, what they find instead is, something like this:
"I had wrongfully received her as a broken baby because of my negative disability attitudes, only to quickly recognize that I was the broken one. " - Ellen Stumbo
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