When she wakes up in the morning with pain she moans and has a hard time fighting the 'just another day with EoE' I have to distract her. Although chronic pain is constant, Abigail is a fun, happy, little girl. The trick I've learned over the years is to get her mind on things that will perk her spirits up a bit.
There is a time to hold her and listen to her say things like "It's not fair." "I wish this would go away." "It hurts so bad" but most of the time I need to teach her HOW to MANAGE her disease (and her pain). And pity parties will never ever work.
I keep the mornings up beat and light. And with Abigail, music always helps. Some mornings like this one I was struggling myself; frustrated with her pain. Having my own little pity party. (I know, awful) Thinking thoughts myself like "I can't do this." "I just want her to feel normal" "How am I ever going to get her to school." "I'm so tired of this" Thoughts like that are NEVER good. I've learned to quickly (as quick as I can) shut down those thoughts that do no good. I need to not only teach her to how change her thoughts but how to change mine right along with her.
So now on purpose I think "thank you Lord for the gift of this daughter." "Thank you for EoE and what it's taught our family." "Thank you for trusting Scott and I with this" "Thank you for the wisdom and strength we need" "Thank you for this day." "This is the day YOU have made. I WILL rejoice and be glad in it." And all of a sudden I feel better.
Music helps to distract her too. This is her song this week. I crank it!
And she rocks it out.
And then we're better. Cuz we're dancing.
Now hurry up! Get your socks on, shoes on, grab your lunch box... we gotta get to school!