Last week I went to breakfast with one of my dearest friends, who also happens to have a daughter with needs very similar to Abi’s. A breakfast burrito, one pot of coffee, and 3 hours later I felt like I had just been to a therapist, had a few martinis (I hadn’t), and exhaled deeply for the first time in a week. One of the hardest things about Abi’s hip dislocation / sciatic nerve pain- is that sitting can be painful. As you can imagine, this eliminates many of our typical positions and reduces our ability to use many of our awesome pieces of equipment. For now, we aren’t able to sit in our amazing rifton chair, or our blue keba seat, and we can barely tolerate the wheelchair or car seat. Sean can hold Abi on the couch in such a way that she is comfortable for about an hour but that’s about it.
Thankfully school has been incredible. They have helped us brainstorm ways to make her chair more comfortable (we have pillows, noodles, and raised foot rests) and they even brought in an air mattress for her to lay on when the chair proves to be too much. I cannot quit singing their praises. Abi has continued to learn and do school work during this odd season- and we are incredibly grateful.
All that to say- until we get this fixed, our world involves a lot of laying down. I find myself assessing and reassessing. I see her laying down, feel a twinge of guilt, and then go through my roster of possibilities: “Can we go for a drive? No. Can I put her in the Rifton? Absolutely not. Can I try the keba seat? Questionable. Can we go ride horses? No.” Occasionally we’ll carry her out to see the hens- or I’ll hold her on the couch and read for a bit- But then, 10 minutes later we’re grimacing and asking to lie back down. Thankfully, Abi is a pro at entertaining herself and she can use her voice activated app games- (this is so much fun to watch- I’ll try to get a video soon) – She can watch videos- She can listen to music- and of course I can still read her books on the air mattress.
It is what it is.
This morning we got her all ready for feeding therapy and school, got in the car to go to the clinic (which is a bit of a challenge these days because it’s 30 minutes away), and half way there occasional grunts turned into full on bawling, muscle spasms, and dry heaving. I pulled over, texted our therapist that we wouldn’t be making it, and came back home. Twenty minutes later she was on her air mattress happy, but still tender.
Between now and surgery it’s a constant battle of what to do- when to do it- how to do it. There are days that are major, major wins- and there are times like this morning that you feel like an exhausted fish swimming upstream.
But alas- as I drove back, with Abi screaming in the back, and crocodile tears racing down her cheeks, I exhaled with an intense sense of gratitude. If we can’t go far, it is okay. We are in a town that loves our babe and knows how to help her when she’s hurting. We can go see our chickens, we can relax on the porch, we can play with the dogs, we can read books, and if we want to- we can lay down and watch 80 episodes of Price is Right.
Sean reminds me that this slower pace is just a season- and pushing her to do anything else would be more for me, than for her. She is happiest when she’s not in pain (obviously) – so for now we will just rock it the best we can- and honestly (thanks to her amazing and resilient spirit)- we’re rockin’ it pretty darn well.
Cheers to you parents finding ways to do life when the simplest task (like sitting up) seems monumental, and to you amazing teachers who refuse to let challenges be the end of a story.