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Every once in awhile, if we are lucky, we get to encounter someone in this life that defies the odds and is the definition of strength and bravery. Not only has this person been a great source of inspiration for me, but she has also genuinely guided me through some of the hardest parts of life. Her dependability is priceless! Fortunately, I get to call this lady my aunt. She, along with her son, entered my life when I was 2, this is the time she began dating my mom’s brother, why she chose him I’ve never understood but she did and I cannot imagine our family without her.
Aunt Sandy is quiet, not like anyone in our family. I often look back and think how shocked she must have been to see how loud and crazy we all are, yet that didn’t deter her. She and her son were always there with Uncle Rick at every holiday and family get together.
When I was little, the things that really stood out to me about my aunt was that she always wanted to make sure she got pictures of everyone, she could crochet anything under the sun, and she wore a lot of band-aids.
As I got older, the more I came to know Aunt Sandy, I loved how she was always the calm one in our family. She crocheted the coolest gifts to suit each of our interests. She had a way of encouraging us to get together when we would all start to drift apart. I could always count on getting cards and letters from her, she invested in us.
What is Epidermolysis Bullosa?
Growing up I got used to always seeing Aunt Sandy with all her boo-boos and band-aids but was too young to question what might cause it or how painful it could be. To me, she was just my normal, sweet Aunt Sandy. From what I could tell, she seemed to function like the rest of us. It wasn’t until I got older that I really started to notice that she was fighting a battle none of us really could understand.
Later I would learn that Sandy was born with Epidermolysis Bullosa. EB is a rare condition that makes the skin blister very easily. Blisters occur with minor trauma or friction and are very painful. Its severity can range from mild to fatal. Sometimes known as the “butterfly skin disease” in children because of the fragility of the skin like butterfly wings.
EB skin is never able to ever heal properly with normal strength: chronic open wounds and extensive scarring develop with attendant pain. Each time EB skin is damaged, the damage is irreversible, and disfigurement and disability accrue over a lifetime. Some severe forms of EB are fatal in infancy; others in older children and young adults.
The chronic wounds of EB can result in decreased mobility owing to pain and the extensive scar tissue that forms. Scarring in turn results in constriction of the mouth or throat, or ‘mitten’ deformities of the hands and feet: benefits of surgery to release fingers, for example, are of limited duration as scar tissue starts to form again immediately. (http://www.debra-international.org/what-is-eb.html)
A Sad Realization On My Part
When I was around 13, I came across a documentary about Jonny Kennedy titled The Boy Whose Skin Fell Off. In one scene, it showed his mother taking bandages off his back before a bath. There sat this grown man crying, cursing, and flinching in pain, revealing what looked like raw bloody skin. I was shocked! My heart sank. Is this what my aunt went through? How could I be so selfish to never inquire? I cried for hours after watching that thinking about what Aunt Sandy endures on a daily basis. Unfortunately, Jonny died at the age of 36, and I realized just how blessed we are that Aunt Sandy is with us.
There was a short period of time when I was 15 that I lived with my uncle. This was during a time when he and my aunt were separated. I got the pleasure of hearing about Aunt Sandy daily. Not only did I get to witness first hand how miserable my uncle was without her, but I also got to hear about how great EVERYTHING she did was. My uncle was a wreck without her. I heard about every special memory they ever had, I even learned how feisty she could really be. After all, she had to be feisty to deal with my uncle.
Despite her size and her disease, she wasn’t weak. When she was sick of my uncle’s addiction to alcohol, she left. I admire her for doing that, especially because that was what pushed my uncle to sobriety permanently. For many years and many miles in between, they were apart. My uncle got sober and stayed sober but Aunt Sandy wasn’t quick to run back. She was doing her thing and living her life. I’m not really sure how they ended up back together but they did and it seems life picked right back up where they left off.
Some of the stories of Aunt Sandy opened my eyes to an entire part of her life I never knew about. My uncle told me that as soon as she was born, it was obvious something was wrong. The doctors had no idea about EB in the ’60s and they told her parents to just take her home and make her comfortable. They did not think she would survive. Her skin is so delicate the smallest touch can leave the biggest wounds. She has had multiple surgeries. Several surgeries involving her esophagus.
EB encompasses a diverse group of rare genetic disorders characterized by skin blistering. However, EB not only affects the skin, but also can extend to the nose, ears, eyes, genitourinary tract, and the upper gastrointestinal tract. Gastrointestinal manifestation of EB most commonly involves esophageal stenosis, caused by recurrent blistering of the esophagus that leads to esophageal scarring. (https://epidermolysisbullosanews.com/2018/05/07/epidermolysis-bullosa-can-contribute-to-esophageal-stenosis-poland-case-study-finds/)
Living Life to the Fullest
Although there is no cure for EB, fortunately, Aunt Sandy has had the opportunity to be part of trial studies. The last study she did proved to be very effective relieving the amount and severity of her blisters. However, when the studies are over life with EB comes back full force. There will be more studies in the future that she is eager to partake in. I’m blown away by my aunt’s courageous attitude when it comes to helping science put an end to this disease.
Aunt Sandy doesn’t let EB stop her! Throughout the years I would hear about my aunt going to all these different Christian women conferences and was intrigued. Intrigued that despite the hand she has been dealt in life, she is still crazy about God, strong in her faith, and strives to encourage others to a life with God. When I was in my mid 20’s she sent me different kinds of Christian literature including a book of the new testament with a long letter inside telling me how I can never go wrong with the word of God.
That new testament book is what brought me to God once and for all. I have the entire story about my Aunt Sandy’s role in my faith written in my personal testimony here. Her relationship with God is undeniable and apparent this past summer when she revealed to me that God had given her my name that I would become pregnant and it came to be true.
Contrary to medical belief, not only did my Aunt Sandy survive past infancy but she has gone on to live a full life. Giving birth to a perfectly healthy son when doctors didn’t think it was possible. Raising that son on such a solid foundation, supporting and guiding him with a remarkable faith in God which has led him on to be a pastor of his own church.
She is an advocate and supporter for DEBRA (Dystrophic Epidermolysis Bullosa Research Association), traveling on her own to conferences to be an encouragement for others suffering from the disease. Flying is especially a challenge when she has to go through airport security, ensuring that they are gentle enough to not cause any more abrasions, which has happened in the past, yet still, she is determined to not let EB stop her. There is another conference coming up next summer that she will be partaking in as well.
The Definition of Strength
Despite her own pressing medical issues, Aunt Sandy seems to always be taking care of everyone around her. She was the primary caretaker when her mother battled Alzheimer’s, caring for her nearly right up until the very end. She is a proud grandma to her grandson and took care of him during the summers when he was young and lived close. She always showed concern and helped the best way she could when my own grandmother was battling Alzheimer’s. But the most demanding caretaking role my aunt has had recently is taking care of my uncle who is in a losing game with Parkinson’s Disease. Doctor’s appointments, errands, prescriptions, clothing, cooking and tending to the house all seem too much to bear for a healthy person, yet she has done it for years with EB. How….. I don’t know. I tell her that all the time.
Aunt Sandy is one of the most selfless people I have ever encountered in my life. I am blown away by everything she does. I feel like she has experienced more adventurous things in her life than I have ever dreamed about. And I’m sure there is a ton about her life and EB I don’t even know.
She deserves recognition.
She deserves a break.
A break from the work, from the caretaking, a break from the heartaches of life. She especially deserves a break from the physical pain of EB, yet she is perfectly aware that day may never come this side of earth and so she just keeps going. She once revealed to me that she uses her closet to escape to mentally prepare for her bandage changes. Most of us cannot even imagine that kind of pain on a daily basis. But again, she goes on with life and thrives the best way she knows how by lifting up other people.
I know at any given moment I can message her about anything and expect encouraging words. There are many miles between us these days and we don’t see each other often but that doesn’t change the fact that she has always been there for me, especially now as an adult our relationship has gotten more mature. The fact that I can do little for her other than listen and pray is disheartening to me. I have turned to her for encouragement and guidance during my recent pregnancy loss, the death of my grandma, the situations my dad is facing, and a multitude of other things and she listens then gives me incredible Godly insight. We will always share our love of cats, love of God, and love for my uncle. I can’t imagine a life without Aunt Sandy.