halfway through the summer with EB

Caring for a child with Epidermolysis Bullosa is one of these things that requires a pretty hefty learning curve.  As we are now 5 months home with Julianne, we’re still very much in the learning stage.  I mean, we do have a bit of a routine, and I have learned how to handle the wound care and bandaging stuff pretty well by now.  But there are new experiences and curve balls thrown at us all the time.

Halfway through the summer I have learned that:

*  Regular socks are for the birds.  During the cooler months we could get away with socks as long as the seam was turned to the outside.  Seams rub blisters on her toes.  But during the summer months?  Her skin is so much more fragile. When I take socks off of her feet, skin just peels off with the sock.  Solution?  Don’t know yet.  As of now, I just don’t put her in socks or shoes at all.  When she NEEDS to wear shoes, I have to pad her feet with bandages and then socks, and then the shoes.  There are always new blisters as a result of this.   I have ordered and will be trying a new type of sock as soon as they arrive.  Seamless, elastic-free, and moisture wicking.  Praying they help out.

*  Healing time doubles or triples in length.  I used to be able to predict how long a wound would take to heal up.  Not so much anymore.  She currently has a place on her arm that has been open for about a week already.  It’s not huge, but every time she gets in the shower or bath it starts dripping blood again.  Cannot get it to heal to save my life.  Again, a result of her skin just being so much weaker with heat and humidity in the mix.

*  Laundry, oh the laundry!  I change her sheets probably three times a week.  She cannot help but scratch herself while she is sleeping, and the result often looks like, well, bad.  The other day she woke up from her nap with blood crusted under her fingernails from all of the itchy/scratchy while she slept.  I feel so terrible for her.  There are things to help with the itch, but Benadryl and creams and even prescription meds all come with their own side effects.  When she watches a cartoon, I have her sit on a blanket that is on the couch.  This saves having to clean the couch cushions since blankets are far easier to throw in the wash!

*  And yet, through it all…  She continues to wear a smile.  I KNOW that she is uncomfortable most of the time, but she’s so used to it that she rarely says anything.

Among the EB community there is a slogan that says, “I Refuse EB”.  I never really got that before, but now I do.  There have been so many times this summer when I have HATED this disease.  I hate the sin in the world that gives us broken bodies, and I hate the discomfort my daughter is in most of the time.  I hate that there is no cure, and I hate that the best I can do for her still isn’t good enough.  I have to make the choice to refuse this emotion, this hatred of the disease.  Not only that, but in Julianne’s case, the disease is at the root of her losses early in life of her birth family and birth country.   I have hope that even if there isn’t a cure for her during her lifetime, there is the eternal hope of a glorified body, free from pain, and itchiness, and blisters, and wounds.  To “refuse” EB for her looks like having fun and doing all of the things kids do, only with a twist.  To “refuse” EB for me looks like not giving up, not letting little things like socks and shoes and bandages get in the way of joy.

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