Grieving My Daughter’s Diagnosis: Thursday’s Grieving Series Post on Saturday

I’m hosting a series over here for the next few Thursdays on Grieving. The original posts/series are found over at my friend Lisa’s spot- Me Too Moments for Moms.

Today, Grace is sharing about her daughter’s diagnosis of Rett Syndrome:

My daughter’s diagnosis of Rett Syndrome came gradually. First the “Maybe…” from the doctor, then the slightly obsessive online search, and then the realization during the search that yes, that list of diagnostic criteria reads like an exact description of my daughter. When the actual diagnosis came, we already knew. We thought we had accepted it. We didn’t know how far true acceptance really was.

Would it become normal? Of course. Rett Syndrome is part of our life now and we are accustomed to it. We take her symptoms in stride, supporting her as best we can with what we have. We live life because we have to—it’s all we can do.

But I still grieve. I grieve for the life we imagined yet she will never have. I grieve for the pain she is in, and the things I cannot fix. I grieve for her frustrations—and mine, too—when things are simply too hard for her. I grieve for the pieces of relationships that are missing because of her lack of communication. I grieve and I cry and then I keep living, because it is what must be done.

Grieving comes gradually. One day I will think, “I can do this. We’ll be just fine.” And the next day something will happen that knocks me off my feet and I fall to my knees, broken. Just when I think we’ve finally moved on to the next stage—when I think we’ve accepted it—I’m proven wrong. Sometimes I wonder if true acceptance will ever come, or whether it’s simply the Holy Grail of disabled parents. Something we all search for, convinced it will change everything and make life better, yet we’ll never find it. We may find something similar to it, but never the real thing. It is because of our love that we always want more for our children—we desire something greater than the present circumstances.

I love my daughter, but I hate her diagnosis. I hate what it has done to her. It’s stolen her voice, crippled her hands, and it regularly gives her pain. I hate that it has stolen her future and her dreams, whatever those might be.

She has so much to say, but no way to say it. I wish I could free her from that cage, give her words to speak and hands that do what she wants them to do; legs that move with ease, a straight back, and a brain free of seizures. I grieve for her captivity.

Yet in that grieving something is revealed to me   To read the rest

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