The weight of the world is not mine to carry. But some days I feel it on me.
I couldn’t sleep last night. I fell asleep on the couch around 10. Woke up at 12 and headed to bed. Dan remained on the couch, because once he falls asleep it is game over. There is no convincing him to move. I couldn’t get the day out of my head. When you have a child with complex medical needs and learning needs a lot of things have to work together to give them what they need. And yesterday I realized some of those things had fallen apart. As I sat in bed recounting the day, wondering, wishing. I couldn’t stop the tears from flowing. Even now typing this I feel them creeping into the corner of my eyes. Her therapists become like family. The love they have shown her, the skills taught, the assistance they have given us, it runs deep into my heart. And when they leave suddenly it breaks me. And then I am left wondering- my sweet girl that loves these people so dearly does it also break her? Has she been watching the video of her favorite therapist 100x a day because she misses her? Or just because she likes it? And truth is- I will never know, because she can’t tell me. I knew this transition was coming. But we intentionally chose to keep her in the same place for an extra school year, just give her and us a year of ordinary. Last year pummeled us. We left it feeling bloody and bruised hoping for a little bit of rest this year. Last night I couldn’t get my mind to rest and I felt myself more than anything, wishing I was holding Emmaus, breathing in the smell of her sweet hair. So I got myself out of bed and went and got her and brought her in to sleep with me. The peacefulness of her slow deep breaths, feeling her chest rise and fall, the warmth of her next to me- it reminds me that it all will work out. That I am lucky she is here with us. (FYI she might have smelled more like poo than sweet- but I still enjoyed my snuggles)
Sometimes this stupid disease makes me blind to the little moments. I see big picture things that need to get done. My whole world becomes a huge to-do list of yucky paperwork and therapy goals. All while trying to manage Emmaus’ health. When I look at my calendar and see 3 specialty doctor’s appointments in a month and know we will likely have another two for illness it makes me break out in hives (okay not literal hives). It feels like a fight. Always a fight. And then when you add the current political climate, man. I just feel the weight of it all on me. I love justice. In my core I believe in doing the right thing. And in a world that is so broken. With a daughter whose genetic code is so broken- that feels heavy.
I have to step back and remember. I am not doing this alone. We have a whole community behind us. We have support. And though what felt like firm foundation might be a bit weak at the moment- my foundation truly was never in Emmaus’ school or her treatment plan (although it is lovely when those things feel in order). So in these times I have to come back to my TRUE foundation.
He tends his flock like a shepherd:
He gathers the lambs in his arms
and carries them close to his heart;
he gently leads those that have young. Isaiah 40:11
This road we are walking isn’t easy. But it is helpful to be reminded that I love and serve a God that is gently leading those who have young. Me. (Thanks to my besties for directing me back to my true foundation via the most hilarious text thread that talks mostly about pizza and how we desperately try daily not kill or screw up our children. Oh and poop. There is lots of conversation about poop. And there is some encouraging scripture sometimes too.)