Real Mamas, Real Stories.
Our contributor Sara shares her latest ‘hiccup’ feature.
All the hiccup pieces have expectedly resonated with me. 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. It is the greatest lesson for me to have witnessed. 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 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 that her daughter 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.
Although one of Lynn’s most prominent qualities has always been the sensitive and caring girl, she has become even more compassionate to others. Before her diagnosis, her main concern was about family, friends and the small social circle she’s exposed to. Her circle of interest has expanded to include people who are suffering or are facing challenges. She wholeheartedly cares about people she’s never seen or met in her life. Her compassion is limitless. I believe it’s her way of feeling helpful to others within the capabilities of her young age.
When I’m frustrated and struggling to accept the reality of her disease, she calms me down and gives me hope when she tells me that one day she will become a scientist and find a cure to Erythromelalgia. I can’t but believe the sincerity in her voice and the determination in her eyes. She has already made up her mind that once she finds a cure, it will be for free and she wants to travel the world to give it to others. That’s my girl, the girl on fire, my warrior princess.
These hiccup pieces are more than just part of a blog series. Their stories and painful snapshots into a mama’s life are just bits and pieces and by no means the whole picture. They are cracks. Flaws. Imperfections. Call it what you will, label it what you want, but they are there for a reason. It is what let’s the light shine through. Although, in this case Lynn is a beacon of light on her own. She’s forced to take things day by day bit by bit, and literally flare by flare. Her lesson and approach to this all is that you just gotta grieve and get over it. No dwelling. “Dwelling just gets in the way”.
“Maybe the reason I have it is to find a cure” It’s a big test.” She says.
It stunned me as the most selfless and mature thing I have ever heard. I took the challenge and I urge you take it and post #GirlOnFire #Erythromelalgia. Let’s help Lynn’s voice reach the whole world. Support @thefirefightermom by painting your hand red in raising awareness.
Bits of this were previously published on Youmna’s blog: www.thefirefightermom.wordpress.com