It’s been a hard few days in the Young house. Katie has had so much pain arising from her Ehlers Danlos Syndrome (EDS). EDS is so frustrating and cruel because while she unfortunately has pain every day, sometimes it just “attacks” and she is so severely affected. She had a weekend with so much pain that walking was not an option, nor was moving anything on her body in general. So, we did a lot of carrying her and using the wheelchair. It’s hard on everyone who loves her to watch her suffer. She missed out on a girl scout event, dinner with grandparents and school yesterday. But you know what? She still smiles and finds ways to be happy despite pain and loss of function. She has really gotten into coding and developing games lately. And she has a crazy fun sense of humor and a wicked smart mind. And she is surrounded by love. Big sister Mary watches out for her like a warrior protector and steps up to help her and fills in on Katie’s chores during these frequent pain spells. Mary is an amazingly kind person with a quiet confidence and wisdom that serves her and others well.
I wish more than anything in the world I could take the EDS away but I can’t. And while I hate it and spend so much energy on worry and anger and anxiety over it, this stupid condition has also shown me the best sides of my children. Katie is a tireless fighter who overcomes monumental challenges daily with a ninja spirit and a grin. She has figured out how to live around EDS, how to be in charge. Mary’s kindness and selflessness has been displayed not just occasionally, or even daily, but multiple times every single day. It’s a lot to put on a big sister and she handles it with grace. And Ryan has become a cheerleader for both of his sisters but is especially attuned to and proud and encouraging of Katie when he sees her back up and walking after days in a wheelchair. They all amaze me every day. So on those days when I feel like giving up and just sinking into anger over my child’s condition, I see them and I see so much more than just the struggle.
I’m skipping the news links today and reporting on my kids because that’s what went right in the world today!