A parent’s story

My husband and I have watched our 13 year old daughter suffer for the last 7 years. The first thing I must say is that she is a truly amazing child. Since she was just under 7 years old, she has never been pain free for more than 9 days… and that was after being hospitalized for the 3rd time.

She has had periods where she could find mild relief for a short amount of time, but she does not remember what it is like to live life without knowing that the pain would come back. Our daughter will never know a life that doesn’t involve checking the label of every single food she buys, a life that will allow her to eat any fresh fruit she wants, a life without a butcher that will not let her eat meat that might have aged. She listens to her friends complain about not having candy in their lunch boxes or about a bruised elbow, all the while, wishing she could eat something other than the salad that mom has packed for her and wishing that someone could understand the pain she feels every day of her life. She longs to be a “normal” teenager.

My heart broke a couple of days ago when she realized that she would be going back to the hospital the next week. You see, there are no pediatric headache specialists in our area… she was supposed to wait till she turned 14 (in October) to see someone who only does headaches. Fortunately, the headache specialist took pity on us and has agreed to see her 2 months before her 14th birthday. The tears of relief she shed made us all so very happy. The only sad part is that she only had two choices for the next week and a half… go to the hospital for 4 days or live with a level 8 migraine. She has chosen to work her way through the pain for now.

We have changed our diet, she avoids triggers, she tries new meds, nothing helps. We do our best to keep her comfortable, but sadly, life goes on. She wants to go to school, she wants to climb mountains, she wants to not sleep through a lunar eclipse because mom and dad feel like sleep is more important to her, she wants to be able to look at flashing lights without fear.

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