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White Hot Rage

I feel a white hot rage inside of me. This doesn’t happen very often. I’ve learned to keep my emotions in check, to swallow down sorrow or rage while putting on a happy face to the world. I strive to stay positive. Besides, little is resolved through anger.

Perhaps my low threshold was from a night of interrupted sleep. Our dog woke me up, bouncing around needing to go out. Half asleep, I trudged downstairs. She woke me up again sometime later, after I was dead to the world asleep. Half asleep, I trudged downstairs, again. Then I woke up to the sound of Hazel screaming. I don’t know if she had a nightmare or what, but she was happy and calm when she saw my sleep deprived face. She sat on my lap, snuggled into my arms, at least until we both realized my lap was wet. Then I was very much awake.

My big to do item for this morning was dealing with administrative type paperwork for the school district and trying to gather documentation from Maggie’s other institutions to help create a complete diagnostic picture. Her in-person evaluation with the school district will be next week and the meeting after that will be to review her official IEP. So I go on to MyChart, trying to print or download meeting notes and emails. Because of all sorts of protections and unnecessary hoopla, I can do neither. At best, I can piece together screenshots of scores of reports that may or may not be helpful. Either way, the last thing I want to do is create a screenshot jigsaw puzzle of observation notes and post-appointment documentation. I forwarded the documentation that I did have, explained how I wasn’t able to forward the remaining documentation easily and I’ll hear back soon whether it’s truly necessary. In other words, mission one was an epic fail and left me frustrated with what I’m considering unnecessary precautions.

Next, I had to complete something called an Adaptive Behavior Assessment System (ABAS-3) Parent Survey about Maggie’s abilities. At this point, I have completed more surveys, questionnaires, and documentation about Maggie than I can count. Many of them are emotionally triggering, and if so, completing them will leave me feeling despondent. Maybe it was the technological frustration, or perhaps it was feeling unrested from interrupted sleep, but it hit me harder this morning than it usually does. I tried to complete them with Hazel coloring her picture book, then screaming for uppas, then coloring on the table, all while attempting to focus on the questions.

I wasn’t frustrated because of Hazel. Hazel is an almost two-year old who behaves entirely age-appropriate. She has realized she has her own wills, wants, and these may not mesh with my expectations, but she is eager to show the world (basically me and Andy) that she is her own person. I get that, and I’m okay with it. In fact, I will encourage her autonomy in age-appropriate ways as she continues to grow.

What upset me were the questions about Maggie. Specifically, my responses for Maggie. I didn’t count the number of questions, which were about 20-something questions per nine or ten sections labeled communication, behavior, etc. It was my answers that upset me. Does she do [fill-in-the-blank]? Does she say [fill-in-the-blank]? The answer choices were Always, Sometimes, Never, and Not Able To. My responses, again and again and again, were Never and Not Able To. As I answered these questions, I could not help but compare my mental answers for Hazel to my electronic answers for Maggie. Needless to say, my Hazel answers would be Always or Sometimes for nearly every question.

I have seen in Facebook support groups for other parents with Maggie’s diagnosis the possibilities for her future, most of which paint a damning prognosis of arrested development. It is wildly unfair that my little girl needs to suffer with seizures, that her brain may not develop, that I could possibly fill out this same questionnaire in a year, two years, ten years, and possibly have the same answers. Most of the time, I am hopeful that all of the interventions we are doing right now will help give her the best possible chance for a happy and healthy life. Today, I am just angry, angry that we have to answer so many questions that makes me feel like we did something wrong to cause this or that there was something we could’ve done differently. Intellectually, I know that’s not true. There’s no real explanation for why she has these struggles, at least no explanation that we’ve determined from plethora of invasive medical procedures. Everything showed inconclusive, which also makes me angry because we simply have no idea why.

There’s a Pixar short called “Float” that hit me harder than anything I’ve ever seen. There’s a young father and his baby boy. The boy can float, literally float like a balloon. The father is scared and ashamed of his son’s difference, so he shields the boy, like Elsa’s parents telling her to “conceal, don’t feel.” They go out, finally, the boy wearing a backpack full of rocks to keep him grounded. But his secret is revealed when the boy sheds his backpack and floats freely, happily, into a park to the astounded faces of children and parents. In a moment of frustration, rage, and brutal honesty, the father yells, “Why can’t you just be normal?” The boy melts into his father’s lap, silent tears trickling down his cheeks, and the father realizing what he’s done, gently swings him and lets him go. The father lets the boy float, and with elation he does.

I don’t want to yell that to Maggie. I never want to say “Why can’t you just be normal?” I know she’s different. Everything about her is different from other children. But I want to scream at everyone who is trying so hard to help her. I want to rage at the world. I want to not compare my daughters in my mind, and I want Maggie to feel happy within herself as she is, not wishing she was different than who she is. I don’t know why Maggie is as she is and I can only hope that she will be able to do the things other kids can do. I don’t want to pin her down with a metaphorical backpack full of rocks. I want her to embrace who she is and not feel frustration, pity, or anger because of the expectations of the world’s opinion of normal. She is my gift from God, and I love her and her sister so much. It just makes me angry, so incredibly angry, that she has to struggle with so much, so hard, so early in life.

Hazel and I are going to snuggle on the couch to The Princess Bride. Some days, it’s okay to stew, to just feel the sadness or rage and to not talk about it. I don’t want to talk to anyone. I just want to sit with my daughter and not talk, not think, and in a few hours, I’ll pick up Maggie with a happy smile on my face after I’ve been able to rest, ready to hear about her adventures from school today.


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