Acceptance is such a funny thing. Knowing what to accept and what not to accept is not always clear–for any parent.
My journey to acceptance of Evelyn’s special needs has been tumultuous and emotional. And sometimes I don’t know if I am accepting too much or not accepting enough.
When Evelyn first started showing signs of physical developmental delays at a couple of months age, I wrote them off to mere differences in development. Over time, although it became more clear that her differences were of a more significant nature. But I tricked myself into believing that she was just moving at her own pace–which she was—but I couldn’t (maybe wouldn’t) wrap my mind around a permanent disability.
Let me back up. Up until my pregnancy with Evelyn, I’ve had a pretty easy life. I have wonderful parents who have always supported me. I’ve always felt loved. I never really worried about anyone because for the most part the people that I loved were healthy. I would say now that I had an unreasonable faith that everything would always be okay–that my life would work out the way that I had expected it to.
Before Evelyn had an MRI at two years old, there was a round of really scary genetic tests. She had been diagnosed with hypotonia (which means low muscle tone) but they didn’t know what caused it. So there were a slew of different degenerative diseases for which they tested over the course of a year. During that year, I stayed up late every single night googling, and googling, and googling. What I read was not reassuring. I lived in fear. Finally Evelyn had an MRI at age two which revealed a brain malformation in her cerebellum. They believed that this explained everything that she was experiencing, that she would always have low muscle tone, but that she would progress typically otherwise.
So I breathed easy for a while…we lived, we loved, we did our thing. When Evelyn was almost three, she pretty much stopped talking and started having absence seizures constantly. Enter a new reign of fear. The neurologists and geneticists went into another tizzy and I think I was even more scared than I’d been the first time since so many signs pointed to a degenerative disease.
There is nothing that I can compare to worrying that your child may suffer and die. Those words are so hard to type. It is almost unbearable for me–for any parent–to consider these possibilities for my child.
So when the blood tests, the mris, the spinal tap, the halter monitors, and all of that other stuff were exhausted, we were left with autism to explain the regression. And autism was a huge relief.
I embraced autism. I wrapped my mind and heart around autism. I accepted autism as part of Evie’s fate. And it wasn’t devastating. I moved forward with optimism.
Acceptance comes at different times. Scott was slower to accept what autism might (likely will) mean for Evie. Shortly after her diagnosis, I remember that he made a comment about her “catching up” developmentally. Even though I gently push him towards reality, often, I don’t believe that he has fully accepted what autism means in our family. I think it has to do with the fact that he didn’t spend time considering the horrible degenerative diseases that were on the table. So he didn’t feel that sense of relief that washed over me when we heard, “autism.”
Last week, he mentioned that a coworker had asked him how severe Evelyn’s autism is. He told him that Evelyn is high functioning. I admit that I laughed because Evelyn doesn’t have speech, she isn’t toilet trained, she doesn’t have self care skills, etc. She certainly wouldn’t be labeled high functioning by anyone else. But it is touching, to me, that her daddy labels her as such–because she laughs, because she loves, because she has a sense of humor, because she has a temper, because we have a family language, because Evie “functions” just fine in his eyes. And I love him for that.
Every time my husband reads one of my blog posts he cries because he is reminded of the fact that Evelyn’s delays and differences from a typically developping are truly profound. Part of me wants him to embrace the probabilities, but another part of me sees the benefits of accepting nothing as an absolute and everything as a possibility. Afterall, it makes me crazy that some of the people that work with Evelyn seem to have written off the possibility of her making gains with speach. Why should I feel the need to tell Scott that it is probable that Evelyn will never live alone?
My acceptance is different than Scott’s. I don’t know which–if either is better. I take life day by day. I don’t plan what Evelyn will or will not be able to do. I’m happy with any fate where my daughter is happy and healthy. Scott doesn’t have higher hopes for Evelyn as what could be considered a higher aspiration than health and happiness? But he definitely feels like Evelyn will make more significant developmental progress than I think is likely.
Where do you strike that balance between not allowing our hypotheses turn into limitations and dealing with things realistically? Because both are essential.
Either way, both Scott and I accept that this isn’t what we expected or planned. We are both surprised that it is, actually, far better than what we expected. And while we might disagree about how things are likely to pan out in terms of our future as a family, we agree that health and happiness are our only objectives. And I think we both have learned that happiness doesn’t live in our expectations for our family–but in our family itself.
This is the crux of it, isn’t it? To accept things exactly as they are, letting go of what we thought they would be, but still hold open the possibility of progress. It is tough to find the balance between those two states of denial and hopelessness. It’s so helpful for me to read that others work on it, too. Thanks.
Yeah, going through your archives now. I think that part of why it’s so hard accept that living alone might not happen is that so many people think it’s the most important thing. And it’s really not. Getting some form of communication up is important, family is important, being able to determine one’s own goals is important, and Evelyn living alone some day is only important if SHE decides it is. Living with friends is a thing, support people who come to your own apartment when you are an adult are also a thing that can be done.
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