Ive been quiet around here lately as I’ve felt the urge to listen and be still. In April we spent a wonderful week in Florida enjoying the sunshine with the kiddos. We were down there for a family wedding but decided to extend the trip!
Before we knew it, it was Judah’s birthday, Mother’s Day and my 30th birthday. Lots of celebrating!
It’s all quieted down except for a 24 hour fever this week that snatched Lillian out of nowhere. I kept asking my niece and nephew to try to give her space but I’d turn around and they’d be practically on top of her. It took my breath away when I realized what was going on.
Their mommy has been “sick” for almost a year. When they visit her we urge them to sit close, to love on her, to let her smell their sweet heads. I was shocked when I realized what was happening in their minds with Lillian being sick. They wanted to be near her, to be gentle and use soft voices. They all sat down and colored around her just like they do with Katie. Cue my heart breaking into a thousand pieces.
This year has changed all of us. I’m somehow less of a germaphobe because no childhood cold or virus seems bad compared to the last year. At the same time if my kids seem weird I immediately wonder if they have some atrocious neurological disease that will snatch them away from me. We live in the reality of both somehow but still keep chugging along.
A few things about Katie’s progress the last few months are worth mentioning. She continues to say “hi”, “yeah”, “no” and once said “Aaaa” when I asked her to say “ash”. We are so stinking blown away we can barely sit still while we’re there. We take turns staring at her in awe.
She’s doing awesome without the trach. Her neck is taking its time to heal but she is a rockstar at breathing completely on her own.
She’s written several words. Mostly names. Sometimes it’s because we ask her to but other times she starts on her own. I brought Lillian in the other day and she wrote “Lillian” unprovoked. It’s incredible. Lillian felt so loved. She just kept telling Katie, “I love you aunt Katie, we pray for you every night in my bed. Gods going to heal you”. Gulp.
So next week makes a year. I don’t know what that will look like. Tears shed for sure, but also I think we’ll celebrate. The Lord keeps spreading the seas for her to walk through. So much in her body is working while so much is left to mend. Please keep praying. It’s working.
We are working on a few tangible ways you can serve our family moving forward if you’d like. Please stay tuned for a few links and ideas now that the summer is here.