When it comes to having a disabled child, their path from birth to end of life, has no comparison. Their journey, their development, their abilities are completely incapable of being predicted. There may be some similarities from case to case if it is a similar genetic anomaly or condition, but you really can’t predict what feats they will accomplish. So, when your child is born disabled or when you get that diagnosis that tells you, your child will be deviating from the “norm”, it is almost incomprehensible.
While the news feels overwhelming, almost immediately, you can adjust and rewrite that vision for your child’s future based on commonalities between children of similar diagnoses. I have mentioned before, the devastation when you have no idea what your child’s life will look like after a shocking diagnosis, but there is also a rebuilding. A restructuring of your own mind to absorb this lofty information even when it’s heartbreaking. You find ways to accept it and move forward with a new perspective. The perspective of understanding and love for the child you received and the child you would be raising. Different than your original vision, but equally rewarding.
BUT, what happens when there is no defining moment for rewriting your child’s future in your mind? What happens when all you are given is “hope” that your child will catch up someday and be like a typical kiddo? What happens when you are comforted by friends, doctors, therapists, and social workers with works like “there’s a chance to catch up,” “keep pushing,” “The more therapy at this age the better,” “don’t give up”. Well, you don’t have to wonder what happens, I can tell you. As a caregiver that stayed at home, whose primary job was to care for my son who had global developmental delay, but no official diagnosis, I had HOPE and was constantly given hope by others. I was actively seeking hope from others. I held on so tightly to the hope that one day my son would catch up and be like every other typical child walking the Earth. It wasn’t just hope I held onto, but it was the idea that I could control it. I was under the impression that the harder I worked, the more likely my child would one day make it to where he needed to be, to the land of the typical kid, to the world in which children were running and playing and talking and agile and exceptionally communicative, and generally easier than the child I had before me. I yearned for that and had no reason to believe we wouldn’t make it there based on my conversations with the professionals. If I was diligent enough. Committed enough. Good enough.
Don’t get me wrong, there was some talk, especially as my son got older, about him not yet meeting his milestones, but it was all about WHEN. I was truly under the impression that he would eventually meet all of his milestones; it would just be later. There was no difficult conversation about when and how to reframe my mind, my brain, my hope, to be more flexible, reasonable, and accepting of my child as he was, right in that moment. It was all about the future and what it might hold for him and along the way. Eventually, the hope I was holding out for him was so radical that it had evolved. It was no longer an underlying optimism that the concept of hope perpetuates, it was ableism. I was failing to accommodate my child in my desperate attempts to make him “normal”.
To top it off, I was holding my grief so tightly, that I couldn’t possibly accept, because I was in denial. Denial that my child would be anything but what I had imagined him to be, and I could make him that way if I worked hard enough. Denial that he would never be up to par with his peers. Denial that his life wasn’t going to be measured by the developmental trajectory for children that he was expected to adhere to.
My grief was trapped, rooted in denial, and my hope was rooted in ableism. It wasn’t until my son was three-and-a-half and began having seizures that the floodgates of truth finally flung open. It was a concrete enough diagnosis for me to finally recognize that my child was sick, he was disabled, and he was never going to catch up. I realized the child I had NOW was the person I needed to love and fully accept so we could move forward as a functional family.
While I hated that he was sick and a part of me died inside when I watched his body helplessly convulsing in his bed, I also watched myself break open and finally admit that I had absolutely no control. That no matter what I did, I would never “fix” my child. And no matter how hard I worked; he would never become typical just because I brought him to therapy. He wasn’t going to “catch up”, ever.
My hope, my ableist hope, was erased and my grief came pouring out of me. And with all of that pain, ACCEPTANCE finally found me and gave me the comfort I so badly needed all those years before. Not just that my child would be okay, but that I would be okay. We would all be okay together no matter what it looked like. And it certainly wouldn’t look typical, and that was a-okay.
After that, I felt relief. The pressure I realized was my own, passed down on me from society, to make my child something he was never meant to be. I fully realized, it was no longer my job to make my child fit a vision in my head, it never was. It was my job to love, support, comfort, and advocate for my disabled child, the way he needed me to all along. I just wish I could have learned that sooner, and I hope that if you are a struggling mom with a child that doesn’t fit the anticipated trajectory, I want you to see it’s not up to you to change them, it’s up to you to accept them even when society tells you otherwise.
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