Lately I've become quite aware of the discomfort that ensues when I talk about my child's potential disabilities. Having been through the motions of grief, anger, frustration, and sadness, I'm now on the other side of them, and have realized that acceptance does not cancel out hope.
I'll never forget the time I first learned that my child may never walk independently. I was baffled. I had been operating under the assumption that he was developmentally delayed, as were most preemies, and would eventually catch up. One day, a little girl in the therapy room was getting her wheelchair customized. I pointed it out the our therapist, saying, "oh, look, she's getting new wheels." My therapist then proceeds to tell me how I may want to look into that kind of adaptive stroller for Oskie, when he's closer to being in school. Having multiple therapists, I think she may have assumed I already knew that independent mobility might not be in Oskie's future, but, alas, I was blissfully unaware. The statement hit me like a ton of bricks. I held back tears as I calmly said, "Oh, you think he's going to need that. You don't think he's going to walk?"
"Well, not independently."
And that was how I learned the severity of my child's delays. I had no f*ing clue. I was in a sort of daze for a few weeks, wrapping my head around my child's potential handicaps. When I shared the news to others, it was usually met with a pep talk along the lines of... "don't listen to those therapists, they don't know what they are talking about", or "he's going to be just fine." Except, these were not truths, they were just cliché statements that were geared at making me feel better, but they really didn't.
I guess you could say I'm a realist with a hint of optimism. I find it much easier and more natural to accept truths. Once I was exposed to the various degrees of independent mobility, and grasped more of an understanding of what our future could look like, it was easier to move forward. However, the piece of the puzzle that others find difficult to comprehend, is that none of this means I've given up hope that he will be independent. There is a lot of gray area when it comes to independent mobility that I have been unaware of up until now. Most people are unaware of it, and I don't hold that against them. Now that my son is 14 months old, the "go-to" question is, "oh, is he taking any steps yet?". This is a completely normal and understandable question, and in no way am I offended by it. I respond very truthfully saying, "well he is very delayed and we are still working on sitting. He may never walk, but we are working as much as possible on independent mobility." To which I've been met with sad looks, hand holdings, hugs, you name it. It baffles people how I can utter these words with complete comfort and ease. I'm able to do this for a mixture of reasons.
For one, I don't look at not being able to walk as a death sentence. If my child never walks, I'll make damn sure that he can get around one way or another. Also, just because I accept the fact that he may never walk, doesn't mean I've given up hope that he might. He might take a really long time to get there, or maybe he'll need braces, or a walker, or walk with a limp. All are perfectly fine ways of getting from point A to point B.
The ability to walk is only one piece of the medically complex puzzle we are trying to put together. I don't like when others assume he will catch up, because what if he doesn't? I don't want to put unreachable expectations on him. He will be and do whatever it is he is meant to do. It is going to take a lot of work on his part and on ours. It will require tons of therapy and practice. He constantly surprises us. As his mother, I strive to make him feel like he is the strongest, smartest, most amazing boy on this planet. I want him to know how proud I am of each and every accomplishment, no matter how seemingly big or small. I don't want him to be told, "oh, you'll get there," and feel like a failure if he doesn't. He is working against so many physical and anatomical obstacles. It would be unfair to compare him to a healthy, typically developing child. He needs to feel empowered, not frustrated, to stay motivated.
It is very possible for acceptance and hope to coexist. Acceptance doesn't mean I've given up hope. It means I've come to terms with a certain possible outcome while simultaneously working towards another. It means being at peace with what my son's abilities are at any given moment. It means pushing him towards his greatest potential, but honoring when he gets frustrated or tired. It means being patient with milestones, and knowing that with every step forward there could be two steps back. It means learning to know my son by watching and listening, and learning how to communicate non verbally. It means rediscovering what our "normal" is and not being afraid to talk about it as normally as it feels. It means teaching others that you don't need sympathy, you're just simply answering their questions truthfully.
To me, acceptance means so much, but it certainly does not mean giving up. At least, not in my dictionary.
..."Acceptance doesn't mean I've given up hope. It means I've come to terms with a certain possible outcome while simultaneously working towards another..."
All photos in this post are by @JulieVerlindenPhotography