A Road Too Long

winter roadThe other day, Katie got upset over something. I knew she would be, so I prepared her best I could, but she still got “so mad” and bit me. I was really angry. Angry at Rett syndrome for stealing her words, angry at her for biting me, angry because her brain won’t allow her to calm down enough to use the words she has, angry at the constant effort to keep one step ahead of her anxiety, angry at the FDA. I told her I was upset with her, that she had words and she was lucky, most girls that have what she has don’t have any words, and that she was wasting her words by not using them.  I told her that someday she would have more words, but that until then she had to use the ones she had. And then she burst into tears.

“Too long, too long,” she cried over and over, the tears just rolling down her face. I felt two inches high, and I gathered my girl up and cried right along with her. “Yes, I said, it is too long.”

And now, she’s turning 22 soon and that means leaving school. I began looking at day-habs for the disabled. I can only say that I was devastated by what is being offered. How can I send my daughter to a place where no one will help her participate, where her “function” may qualify her for the room with 60 year old people and not the higher functioning younger ones?? I can’t do it. And so I have to keep looking. I hate this part of our journey.

I’m tired of this road we’re on today. It is too long, it seems endless. I try so hard to be positive, but knowing the wait must seem like an eternity to Katelin, my heart breaks. And, I second guess myself, was I too hard on her? Shouldn’t I presume competence and talk to her like an adult? But, wasn’t that just too harsh, telling her to use the words she has when I can’t possibly know how hard it might be in that moment? I feel so heartbroken for the parents whose children don’t speak, but that’s not Katie’s fault nor responsibility. I can’t take back what I said, but should I? Who am I to tell Katie she’s “lucky” even though I feel she is, that we are? Who am I to presume that just because we are walking side by side that we are on the same road? Always second guessing. Should I have taken that turn or the other, where should I rest along this road? Where should I run, go slow, stop and just view the miracles around me on any given day.

I read today about a Multiple Sclerosis trial. The gist of it being that the participants were given a transplant of their own bone marrow so that researchers could try and track the progression of how it starts etc., but to their amazement it didn’t come back. I want that for Katie and other people with Rett syndrome, a road cut short; you turn a bend thinking “just another bend to another 100 miles” but then all of a sudden you’re at the finish line and people are cheering and throwing confetti in the air and you just can’t believe it, so you stand there stunned until it all sinks in and you do cartwheels in the soft, wonderful grass and you take your shoes off that have walked you over stone and mountain and run around on that grass yelling “I made it, I’m free, I WIN!!”

I can only hope she forgives me for the mistakes I make, that I may not even know I am making, and realizes that no matter how long this journey is I am never leaving her alone, that we will climb the hurdles together, until we are at the finish line and it’s a beautiful view and she can tell me all about it.

I just really hate Rett syndrome today.

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4 Responses to A Road Too Long

  1. Jaette says:

    I’m in the I hate Rett mode today also. Maybe not tomorrow, but I doubt it.

  2. mdfcapecod says:

    Thank you for sharing through your writings ~ they help me to understand the battles you and Katie face daily. You are already winning ~ just read your last paragraph again. I admire you and Katie so much you are such a source of strength for me. As Martin Luther King Jr. said: “We shall overcome”…….Love You

  3. Allison Odom says:

    Oh, so many things, so well articulated. Thank you.

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