EB & expectations

Recently all four kids were out playing in the front yard, and riding bikes in the cul-de-sac.  We moved to this house in the middle of last year, and the bigger yard and bike-riding space has been a gift for my outdoors-loving children.

It’s also that season where spring sports are in full swing, and we have three little athletes excited to be playing.  One soccer star (ummm, side note:  how CUTE are tiny little soccer players???).  One baseball big-leaguer, and one first-season volleyball girl.  While the practice and game schedules make me go a little cross-eyed at times, I have to admit, I’m excited for all of them.  I’m determined to be the best Soccer/Baseball/Volleyball Mom there is (where do I buy THAT t-shirt??)

So, all four are playing outside, and of course, their various sports equipment are involved.  We have a baseball bat, a sack full of whiffle balls, a volley ball and two soccer balls. Julianne, of course, wanted in on all the action.  She ran around in her Crocs & socks & girly Minnie Mouse skirt kicking those soccer balls like a champ.  She picked up a baseball and threw it so far I had to go rescue it.

I was just watching, contemplating how amazing this child is.  Surely all of this running around was not comfortable.  The wraps over torn skin and blister pops that occurred after the playing are evidence that the play time was hard on her body.  But she didn’t care.  Frequently a neighbor or two will step out and chat for a bit when we’re out, and this time was no different.  Our next door neighbor made  a comment about what a strong arm J has, and how she should play softball one day!

My immediate thought?


She can’t.  The shoes would kill her feet, and she would shred her legs if she ever tried sliding into base.  She cannot bear too much heat, and wearing a hat would be too hot for her head.

All of these thoughts and more.  Immediately in my mind.


Later I thought about it again and realized that I had done something I told myself I wouldn’t.

You see, I’ve never parented a medical needs child before.  I mean, we have pretty ferocious food allergies in the house, and we have had some other issues, but none have been the sort that might change the way daily life looks outside of avoiding certain foods and taking medicine faithfully.  I wanted to go into being Julianne’s mama knowing that she had a condition that might prevent her from doing some things, but that it didn’t have to; that SHE was the one that needed to make these decisions.

To play sports or not is just a little piece of this. I want HER to be the deciding factor in how she wears her EB.  Whether she chooses to wear leggings to cover her legs, or if she decides it just doesn’t matter and since shorts are cooler, bring on the shorts.  Whether she chooses to grow her hair long to cover some scarring, or if she decides short hair is just so much easier. Whether she chooses to wear the fancy shoes and deal with the blisters, or wear the Crocs to stick with comfort. Whether one day she decides to move to a cooler climate to be more comfortable, or decides that the Great State of Texas is where it’s at (and, trust me, it is)… all of these are choices I want her to be a key player in.

Now, granted, as a newly adopted 4 year-old, there are many choices I need to make for her right now.  Since I am the purchaser of all of her clothing and shoes, I’m making the calls.  But I’m leaving the option open.  She wears shorts most days now because it’s too hot now for leggings.  She loves dresses, and twirls around like a princess regardless of the number of boo-boos that grace her legs.  And, I’m okay with that.  I watch others when we’re out in public, gauging their reactions to her.  I see a lot of curiosity, and a lot of questions forming in eyes that won’t make it past their lips.  I just keep going, shopping for groceries because me acting normal is their cue that they should, too.  It’s also Julianne’s cue once she is old enough to realize she looks different from many others to know SHE is normal.  Whatever “normal” is! 😉


So, maybe one day, she will want to try out a sport.  And though my heart will be pounding, we will talk cost-benefit analysis and then let her make the final call. She, after all, is the one living with EB.

My expectations need to be re-thought.  I cannot limit her based on what I see others do, or how I think she needs to behave to prevent new wounds.  Wounds will be a part of her life, no matter what activity she is involved with.  I suppose there are things that are less wound-inducing, but seriously, she could be a librarian and get blisters.

Why not try out for the softball team one day, if she wants to?  While my immediate reaction may have been to recoil to protect her, the real protection comes in letting her do things and being there to cheer her on and bandage the wounds afterwards.  I won’t be the one to tell her she cannot do something because of EB.


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