What Do You Do When Life Gives Your Child a Rare Disease?


Most people who go through hard times are familiar with the expression,“When life gives you lemons, make lemonade.” My question is, what do you do when life gives your child a rare disease?

Youmna smiling with her daughter
Youmna with Lynn.

A year ago my beautiful and smart princess Lynn, had her first erythromelalgia symptoms, right after her 8th birthday. Needless to say the whole experience has been very painful and challenging for all of us. The most painful of all was realizing this is a rare disease that has no cure whatsoever. What’s even more devastating is the lack of an effective treatment to alleviate the daily pain she lives through. Lynn lives with constant pain. I also live with the daily emotional pain as I watch my daughter struggle, ever so helplessly without being able to take away her pain.

A mother’s role is hard enough, but it is a role I cherish dearly and I find great pride in it. The fact that doctors know so little about this rare disorder has definitely made my role more challenging. I don’t know what to expect, because doctors know so little, they have no sufficient advice for me.

I have all these questions doctors cannot answer.

I remember feeling terrified when Lynn’s symptoms were first misdiagnosed as an allergy. I was thinking about all the new nut-free recipes I would have to learn, the EpiPen that we will have to carry with us everywhere she goes, of how I will have to notify the school and make sure we travel on a nut-free flight.I had it all figured out in my head, because there were clear guidelines to follow, and still I was terrified.

But this — the fear of the unknown, the fear of being helpless, how do I face it all?

The feeling of guilt is unbearable.

I feel guilty for trivial things.

I feel guilty for being pain-free, while Lynn is not.

I feel guilty for being able to wear closed shoes, while Lynn can only wear open sandals.

I feel guilty I am able to walk, while she has to use a wheelchair.

I feel guilty for being able to do all the things that she can’t do.

Then I wonder about other moms, who have terminally ill children, moms who have lost their kids in sudden accidents, and then I feel guilty for feeling guilty. It’s a vicious cycle I often find myself stuck in, and have to fight to get out of it. I know I have to be a role model for my daughter. I have to be the source of her hope and strength. I try to practice what I preach to her every time she wants to quit. How will I convince her to fight this devastating condition? How will I teach her to count her blessings? How will I encourage her to enjoy the little things in life and embrace the pain-free moments? How will I talk her through the pain, if the words don’t resonate from within? It’s difficult when you are stuck on the guilt train that keeps taking you to the ends of this mysterious ride and back. Unfortunately, I don’t have the magic answer, but I know that I’m learning from the best, from my warrior princess Lynn. I know I’m fighting my own battles along her side.

I know when life gives you a rare disease, you can’t give up, you have to go through the ups and downs. Patience is a learning process that has many devastating moments hidden along the way. You have to get dirty as you process all the pain and keep going through it day in and day out. You have to feel guilty and blessed and all that is in between.

“Keep faith my warrior princess.” That’s what I keep telling her and reminding myself as we continue on our rare journey.

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