Epidermolysis bullosa. It’s a bit of a mouthful, and that’s just the start. Beyond the general diagnosis lie various types and subtypes that add multi-syllabic words to an already difficult to pronounce condition.
Epidermolysis bullosa is the condition our daughter was born with. It causes her skin to be extremely fragile – shearing off and blistering at the slightest provocation. EB is the instigator behind the daily bath and bandage changes that are often the least favorite part of our day.
Epidermolysis bullosa makes me so very angry most days. I hate this condition that she has to endure. I hate seeing her hurt. I hate seeing the look in her seven-year-old eyes when she makes the decision to not participate in an activity because she is afraid it might hurt her.
Epidermolysis bullosa makes my heart burst with pride. I may hate EB, but when I see her limp out of her dance class with tears in her eyes knowing she stuck it out because her love for dance is greater than her willingness to admit to pain… that does something to a mama’s heart.
Epidermolysis bullosa is community. We have the very best friends in this community. We have people who understand what it’s like to be asked questions that make your mama bear rage and your blood boil. We have people who understand the frustration of doing everything you can possibly think of to help your child and still feeling like a failure some days. We have people we can text or call at the drop of a hat for advice and know we will hear back quickly. This community we have is priceless; we may all be joined by a condition that seems otherworldly in its efforts to create chaos, but we are also joined by compassion and hope.
Epidermolysis bullosa is bone-tiredness. It’s a head that feels like it’s stuffed full of sand and you can’t think straight anymore. It’s forcing yourself to do what needs to be done even when it’s the last thing you want to be doing.
Epidermolysis bullosa is a daily reminder that the darkness has been overcome and is being overcome. It’s trusting that we are a part of something bigger than ourselves. It’s trusting that our family is doing exactly what God has called us to do. It’s taking the anger and helplessness and laying it down at His feet admitting that we can’t control the world around us.
It’s an awful sort of grace we feel every day and if I’m honest, I’m both grateful and rebellious all at the same time. I’m the prodigal daughter who tried to fix everything on her own only to discover she couldn’t.
EB? It’s not fixable. There is no corrective procedure to make things right. There are no therapies that will overcome DNA that has shifted to produce this skin that is as fragile as a butterfly’s wing. It has taken me to a place where I understand in a deeper way what it means to lay my burdens down. It is a process which has been terrible and yet life-giving.
Epidermolysis bullosa is not who we are as a family, it’s not who my daughter is. It is, however, making us into something different… stronger, more compassionate, kinder. It has given us a peek into the doorway of daily suffering and it has called us to lay down ourselves and take up the burden of suffering with her. She doesn’t walk this alone. She has us. We have her. We are a unit that is strong on the inside even when the outside seems fragile.
Epidermolysis bullosa made our family complete. EB may be the result of mutations that are labeled “nonsense” or “mis-sense” or other such terms, but it has changed us into something that makes complete sense.
We are who we are in part because of EB, and that’s a good thing.
What a beautiful post. You openly share the deepest places with sure strength and grace. I know I can never fully understand as Mom, but after reading your posts I feel I get it better and it shows me how to intercede for you and your family. I love you friend.