Making Every Minute Count, Amidst All the Pain
Simply put, living with EB hurts, but as cliché as it may sound you need to take the good with the bad. My daughter, Sarah, was born with Recessive Dystrophic Epidermolysis Bullosa (RDEB). She turns 12 this September, and we’re having a sleepover birthday party at a local hotel. We planned early because that’s part of the fun. We pore over party supply catalogs, pick out decorations and favors. We’re being silly and we get excited over the littlest things. Many people often are surprised when they learn that I have a child with an illness as serious as EB. I come to work with a smile on my face every day and try to keep a sense of humor throughout the day. I was recently asked by a coworker if I was a cheerleader in school. Now that was funny!
Living with EB comes with its unique challenges, but we have yet to face an obstacle we can’t overcome. One that comes to mind was finding an appropriate school for Sarah when she aged out of her hospital-setting school program. We explored several private schools and selected one that was a good fit. When we were ready to sign on the dotted line, the administrators had a change of heart because of concerns that Sarah would be too much of a liability. When we decided to go the public school route, debra of America's Executive Director made the trip from New York to make a presentation on EB to the entire school staff. This allowed the teachers to learn enough to help their students understand that Sarah was a regular child who required certain precautions. She later returned to conduct a clinical presentation to the district nurses in the event any of them would ever have to substitute at Sarah’s school. Today, Sarah is finishing 5th grade, well-adjusted in her school environment and well-liked by her peers.
Up until a couple of years ago, Sarah impressed her doctors because despite having a severe form of EB, she fared pretty well. Although she had badly affected areas, they were localized. She was healthy and robust. She was vibrant and full of life. I felt fortunate that somehow she seemed to be defying the odds and appeared to be on the mild end of the RDEB spectrum. Deep inside, I feared there would come a time when things would change. A couple of years ago, she took a turn for the worse and the brutal effects of EB started to ravage her little body. Today, she is preparing for her first blood transfusion to hopefully improve her severe anemia caused by blood loss and nutritional deficiencies. She is on several pain medications, including Methadone, but they barely take the edge off the pain. Her wounds are deep and widespread. We spend about five hours every day bathing and bandaging. Her fingers are contracting. Her spirits are down. But they are not broken.
We have reached a point where life has gotten incredibly difficult, yet we are blessed. I am lucky to have a wonderful mother who welcomes Sarah home from school every day, feeds her and makes sure she is safe and comfortable. I am lucky to have a small, but close-knit family that supports us through difficult times and friends that are more like our guardian angels who tuck us under their wings. I am lucky to have a job that provides me with the flexibility I need to care for Sarah and good health coverage to ease the financial burden imposed by EB. I am blessed to be Sarah’s mother, but also realize that this blessing comes with much heartache, many hours of lost sleep and many hours of wondering, “What next?” While I do most of my deep thinking on my drive home from work, nothing brings me more comfort than arriving home and seeing her resting peacefully on my mother’s couch.
I admit it’s hard to exude inspiration and optimism when your child suffers every moment of her life. It’s especially hard to sugar-coat the effects of such a devastating disorder and the impact it has on the family. It’s difficult to say “fine” when people ask how things are because things are not fine, and they may never be fine again. It’s hard to not take EB personal, to not see it as a monster that has relentlessly taken a firm grip on your innocent child. Nonetheless, you have to possess the innate ability to find a silver lining in everything, and EB is not exclusive. I, myself, don’t think I was born with this ability, but I do think I have acquired it little by little since Sarah’s birth.
There are so many inspirational poems and sayings, my favorite being “Welcome to Holland.” What parent of a child with special needs doesn’t know this poem and reflect upon the words to benefit from their calming effects every now and then? Yes, EB is cruel. It has robbed my daughter of the life she was meant to live, but there is still much happiness to be shared. If there’s one thing I firmly believe in and one message I could send out to parents of EB children or to any other parent who never made it to Italy, it is to create happy memories. I have surprised Sarah with arranging a meet and greet with her favorite actress and a new meeting is currently in the works. Last year, she cried tears of happiness when I surprised her with a Yorkie puppy that she named Kiwi. We even took a trip to Paris to visit family. Was it difficult to make this journey? Yes. Was it worth it? Absolutely!
I am glad we have “seized many days” and can reflect on such special moments as cuddling up with a warm little puppy and seeing the Eiffel Tower, illuminated in all its glory on a cool spring night.
We all have a mission in life and ours is to continue fighting for as long as God wants us to suit up for battle. We will continue to spend countless hours removing blood-stained bandages and re-wrapping with infinite yards of pure white ones. We will continue to create mountains of dressings day in and day out in the hopes that one day soon things will turn around for the better, just as they did for the worse. Yes, ours is a heavy cross, but we will continue to appreciate everything there is to appreciate—big or small—all the while, creating new memories.