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.