Just now as I was taking Jonah to the potty, he and I had this conversation.
Jonah: Where did that blister come from?
Me: I think you've been scratching there. You really like to scratch.
Jonah: (defensively) No I don't! It just itches!
Me: I know, Buddy. I know it itches so much. I wish I could take your itchies away.
Jonah: Only my Father can do that.
Me: I know. And we'll keep praying every day that He takes your boo boos away. But if He doesn't heal you here, where will you be healed?
Jonah: In Heaven. But if I'm healed here, what will that be like?
Me: No more itchies. No more blisters. No more bandage changes.
Jonah: And my skin would be perfect just like other people's?
And then I cried.
Y'all, most moments of most days, EB doesn't sink my heart and make me tear up like I used to. As Jonah has gotten older and has been able to put words to his pain, discouragement and disappointment, and we've been able to support him with words and actions he can now understand, the day to day suffering has seemed less somehow.
But then there are days like today, where we went to Aldi and then to a produce store, and no fewer than three people at each place asked him or me if he had the chicken pox, got hurt, "got in a fight with a bear," or what happened to him. Today, for the first time, Jonah answered someone directly, by himself. He said, in a hushed voice, "It's a skin disorder." The words he's heard me say a million times. It wasn't with hurt or shame that he said it, but I know he knows he's different. Oh, that he grows to learn that "different" is not bad or negative - that people who are just "normal" miss out on some of the treasures and joys in life that we have discovered because of his EB. That he will know how much he is loved, how special he is to SO many people, and of the lives he has changed, purely because of his faith and fight.
I cried as I got him off the toilet and gave him a huge hug. "Jonah. You are beautiful and perfect. Do you know that? It doesn't matter that you get boo boos on your skin or that you wear bandages. You are so amazing and special, and you are the toughest guy I know. Do you know I think you're perfect?"
"Yes, Mom." And then he hugged me so tight, because in his head, I was the one who needed comforting, not him. That's just how he is. Another gift he has because of his struggles - a compassionate and tender heart for others. Fitting, I suppose - as his boo boos are visible on the outside, most of us carry our boo boos on the inside, where no one can see. And when I'm trying to fix my boo boos with practices and theories and plans, I'm thankful to remember, when I'm in need of true healing, "only my Father can do that."
For I will restore health to you, and your wounds I will heal, declares the Lord... - Jeremiah 30:17