When Life Gives your Child a Rare Disease

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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?

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 that 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. While Lynn lives through the physical pain, I live the daily emotional pain. I have to watch my daughter 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 efficient advice for me. I have all these questions that 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 that I would have to learn, the Epi-pen 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 all that? The feeling of guilt is unbearable. I feel guilty for trivial things. I feel guilty for being pain free, while Lynn has to suffer. I feel guilty for being able to wear closed shoes, while Lynn can only wear open sandals. I feel guilty that I can walk while she has to use a wheel chair. 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 that I often find myself stuck in, and I 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, if I don’t get off that guilt train that keeps taking me to the ends of this mysterious ride and back? Unfortunately, I don’t have the magic answer to that, 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 that when life gives you a rare disease, you can’t give up, you have to go through the ups and downs. You have to get dirty and ugly 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 myself. Patience is a learning process that has many devastating moments hidden along the way.

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12 thoughts on “When Life Gives your Child a Rare Disease

  1. No words at all after reading this tears down all what i can say love you youmna love u lynn keep on with faith hope all ur pain lynn will be gone and u can live ur life normally God bless u both

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  2. I was deeply moved by this blog… almost to tears…. This is how my mother feels watching me suffer daily. She can’t help me. She can only pray with me and tell me she loves me. You’ve been quiet over the past several months and I understand why. The first year is the worst… knowing it’s rare and there is no cure. It’s hard to accept that. I am about 1.5 years into my EM diagnosis, and I’m scared. I feel guilty for being scared because I know there are children out there suffering with this same horrible condition. I bleed for the world and wish I could save everyone….or trade places with them… but all I can do is raise awareness and pray that someday one of our blogs falls in the right person’s lap. We need to raise money for more research. I love you, friend. You’re a wonderful mother and just imagine how life would be if you were both disabled? Don’t feel guilty that you can walk and wear shoes…. Lynn needs you to be strong and healthy for her… to get her through these times. You are doing your best and that is all we can do. If you ever need to vent, I’m here. With love, Melissa

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    1. Thank you for always being the sweet and caring friend who knows all too well about pain and suffering. Thank you for being a great advocate for all the warriors especially the children and for putting yourself out there to spread the word about EM. I hope that we can raise enough awareness for a proper funding to be allocated for research and eventually a cure that we can all celebrate. Keep hoping despite the burning. Much Love and Appreciation to your friendship and support. Youmna

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  3. nshallah you will find a cure for Lynn disease, its awful watching your child suffer and being helpless to help in any way. Keep up the strength. May God be with you.

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  4. Hayete it is really so hard and painfull we feel guilty too for not having the chance to help in any way.. You are a great mother moon and Lynno our brave warrior, our beautiful princess May God and his angels keep you safe and take away this daily pain..our hearts are praying for you day and night…we love you so much

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  5. Lynn is such a brave child, she is a student in my art class, when she feels that the pain will start her power and her braveness start ,she holds herself to a poin that she can bear ,takes her herbs quitly without even annoying anyone in the class or even the institute,some times she chose simple words for her huge situation.
    All of this pain didn’t affect Lynn’s sweetness or kindness or politeness .
    Yomna ,you have such an amazing role and you are doing it in a way that no one on the earth can do it in the same way for her.
    Bless you and Lynn .

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    1. Thank you Reem for your lovely words and for encouraging Lynn and making her feel comfortable. You are an amazing person who has so much patience and a great art teacher who has so much talent and very inspiring for the kids. God bless you and your family.

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