I was called in again to tame the fear of Mr. Needle and its lurking presence in the life of my daughter. It is never easy, yet it has become part of a routine in many ways unfortunately. As parents, we will do whatever we can to ease a bedtime woe.
Tonight’s conversation brought me to a full halt. I would be lying if I said I have not picked up on similar questions in the past or awaited this very one from Kelsey herself. Sometimes the reality of a situation is far different than we imagine it will be.
This one had my put on all of the mom courage I could muster to get through the discussion before running out to have a long cry myself. The reality of it all hit my like a ton of bricks.
Three simple words escaped my beautiful child’s mouth. Three words you do not wish to hear from your baby: “Why me mom?”
I have asked that question a great many times myself. Through sleepless nights, hospital stays, and countless tests. I have wondered. I have prayed for answers. I have prayed for strength to explain it to my child if she ever wanted to know. There it was.
I was silent and tried to remain strong and steady to truly answer the question in a way that she deserved to hear.
She continued in her wise little way, “I’ve been wanting to ask you this for a while, Mom. Why only me and not my brother. How did he get lucky and I did not?’”
I tried to use visible signals that she could understand. “You have blonde hair, he has brown, etc.” She seemed to get it. But to explain that deep inside, something so powerful, so life-altering, and so invisible was missing from her body that her brother was lucky enough to “get” and she was “not” was tough to say aloud.
I did start filling up a bit with tears as I explained, but I think that is ok. Our emotions make us human and as strong as I try to stay in her presence, she should know how deeply upset it makes me at times, too. She wiped my tear and told me not to feel upset by it. “You cannot change it. I know you would take it away if you could,” she said. Wise beyond her years.
But oh Kelsey, if you only knew how hard your family, your doctors, and your unknown friends around the world are trying to change it for you. Someday, I hope that you not only know, but you feel it when we figure out a way to cure you all.
Speaking of Friends and Wonderful People ~ Please SAVE THE DATE!
September 30, 2017 ~ Softball Tournament for A Cure! Pennypack Park on the Delaware
MORE DETAILS TO FOLLOW!
