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I DON'T KNOW … One Mother's Reflections on Her Daughter’s Disease

One mother's reflections on her 7-year-old daughter's rare disease.

I don’t know why she got this disease or whether they got it all with the surgery. I don’t know if the fact that she is 7 helps our odds or hurts them. I don’t know what she thinks about as she lays inside that bone scanner machine. … if she can feel how intently I watch and monitor her every breath. I don’t know why her eyes twitch and move under her eyelids. I think perhaps she is dreaming. She says she sings songs in her head.

I don’t know if when I kneel down in front of her for our heart-to-heart “love transfusion” hugs the healing is more mine than hers. I don’t know what the next scans will show. … whether the disease will appear on her bones, heart, brain or lungs. … or even if we should have the tests at all. I don’t know if all the radiation will cause a problem down the road that is bigger than our actual current-day risk. I don’t know how much our doctors really know about this disease they say afflicts one in a million kids or if their interest is more in my daughter or the disease. I suspect the latter.

I don’t know what I will do if it comes back. I don’t know how to survive chemotherapy on my baby. I don't know how to lie and say the needles won't hurt.

I don’t know why my head worries constantly, when deep down in my heart I only truly prepare for the best of outcomes.

I don’t know how not to smile when she confesses to me that her "big secret" is that she thinks she may have "anger issues" after wanting to—but not actually doing it—push back at a fellow second grader who pushed her first while standing in line on the way to cafeteria.  

I don’t know what to say when she cries as night, begging me not to die before she does. She says she could not survive it when the real truth is the other way around.  I don’t know not to fear that her words are a strange kind of reversed premonition.

I don’t know what to say when my other two young daughters tell me I give in to her. … I let her get away with not cleaning her room, the bunny’s cage or her toy mess in the family room. … that I ignore it when she yells at them for not giving her the art box, the iPad, the bunny, the clicker and most anything else the exact moment she wants it—except that probably they are right.

I don’t know how I got so lucky to be the mother of these three girls. I don’t know  what good I did to deserve it, and I don’t know if they mind that to most all of their real life questions I answer, “My darlings, the truth is… I really don’t know.”

But what I do know is that I am blessed, and I would trade none of it.

This post is contributed by a community member. The views expressed in this blog are those of the author and do not necessarily reflect those of Patch Media Corporation. Everyone is welcome to submit a post to Patch. If you'd like to post a blog, go here to get started.

Kristen Harnisch February 05, 2013 at 07:41 PM
Thank you so much, Anne, for this honest and heartfelt glimpse into your current family and personal struggle. There is both fear and freedom to be found in surrendering to the "I don't knows." I hope you all find peace and strength in the days ahead and maybe a little comfort knowing that you have an entire community of people who care about your family and love you all.

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