Having the opportunity to talk to incredible auspicious moms that are handling motherhood along with Spinal Bifada, Down Syndrome, Cancer Remission and Albinism (to name a few) with such strength and grace has been more than a reality check for me. It is the greatest lesson for me to have witnessed. All these hiccup pieces have resonated with me and expectedly so, because at the end of the day, a mama is a mama. Our DNA is slightly different on the worry scale and our resilience just that much stronger. Youmna is the epitome of that combination. After listening to her story for five hours, she didn’t cry or ask for a hug or question God because she had already done all that. All that was left to do was to listen and help her spread awareness.
I understood her and why she would feel alone and isolated. Youmna had been dealing with this rare disease for two years now. With only ONE registered case of Erythromelalgia in the Middle East, it’s heartbreaking to realize Lynn is unable to enjoy her childhood with this agonizing condition and without the carefree nature every childhood should be lived with. Instead she is forced to deal with this profound circumstance and lifestyle.
I’m always scared to not do the hiccup justice and always try to package it with a big Fragile handle with care sign. For the first time though, there was no need for this. She had the story down so beautifully that I couldn’t but republish. So here is Youmna’s hiccup, Lynn’s story written in the best possible way. In her mama’s words.
“Pain doesn’t define who you are but it could mold you in unexpected ways. I’ve seen it happen to my daughter Lynn, and it’s only been a year since her diagnosis with Erythromelalgia. The Man on Fire Disease has brought the best out of her.
Erythromelalgia, formerly known as Mitchell’s disease is a rare vascular peripheral pain disorder where blood vessels in the feet or hands are blocked. Erythromelalgia (EM) is a rare neurovascular condition with common symptoms such as heat, pain, swelling and redness. It’s considered a rare disease with no cure. www.erythromelalgia.org
I can count and list many limitations and struggles she faces daily. I can describe her pain and make a graph of her pain level over the past year. Yes, I can. I’ve got it all written in a journal. But I won’t.
I can write a list of things she can’t do anymore. I can. I can recount the many questions and worries she has on her mind and that flood my mind too. But I won’t. There’s no need for that dwelling.
But, I do want to share with you the positive change that has overcome her. I know it’s hard to believe there is a positive outcome from such a painful disease. It’s nothing any doctor would have accounted for, and I certainly haven’t been taking notes of it. We didn’t expect it and it wasn’t a part of her diagnoses either. But it’s definitely something hard to miss.
Through this disease Lynn has learned a lot about herself. She has gained strength to face the daily pain but mostly the uncertainties. My heart aches to see her physical limitations but she acquired another level of discipline. She had to accommodate to certain environments, give up certain activities and replace them with others. Lynn learned to plan her day according to her level of pain.