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Maybe it’s because the laundry is piling up- because there are smaller loads caused by Grace’s random “schedule”.

Maybe it’s because Graham can’t quite grasp the concept that he should put a toy away if he doesn’t want Grace to chew on it.

Maybe it’s because Grace had five days of one hard seizure a day because of an illness that should have shown up other ways. And it wiped her out. (At least we have it figured out now!)

Maybe it’s because the medicines she needs to get better are hard to find, even with all the pharmacies in Des Moines. And then there are all the phone calls that go with illness.

Maybe it’s because Graham is having trouble separating from me morning and evening.

Maybe it’s because no one person seems to know how to work the assistive technology we are trying with Grace, but the rep thinks we should just call the help line…..like we don’t have three million other calls to make. Why can’t it just work?

Maybe it’s because caring for Grace means caring for her 24/7 – always, always, always, being “on call”?

Maybe it’s because we are planning for if Kevin or I or both of us would die. And it’s depressing. Big. Messy.

Maybe it’s because the teachers at school can do better at Grace’s hair then I can.

Maybe it’s the threat of a surgery that would reroute Grace’s urine through her appendix and out her belly button.

Maybe it’s because I’m feeling like I have to redefine inclusion for Grace or risk driving myself nuts.

Maybe it’s because I’m trying to eat healthier and not eat ice cream very often.

Maybe it’s because Grace is about to turn 9, and I’m not a big fan of her birthday- the day that signifies the gap- the unrealized dreams- and the momdom journey I never thought would be mine.

Maybe it’s because my hands are so cracked from washing, bathing, and cleaning that they are painful.

Maybe it’s because when I’m with Grace and Graham by myself I still don’t feel like I can meet both of their needs effectively….someone gets a late supper, or someone gets to bed late and gets rushed through stories and bedtime snuggles.

Maybe it’s because Kevin and I both have jobs that take us out of the picture every now and then and there’s a lot of prepping and planning that needs to happen for that.

And maybe it’s a combination of a few of those things…..

If you took the time to read all that, let me give you a happier ending. One morning this week I got to work and took off my dress coat and had a moment. I went to put my car keys in my pocket and noticed that my coat is covered in fuzz. Pink fuzz. The fuzz is from Grace’s coat. I have earned that fuzz lifting Grace in and out of the van to therapy, church, appointments, errands, school, etc. In my coat pocket there was a pill crusher we used for Grace’s meds (that I never took out after we went bowling with friends over the weekend), Graham’s kaleidoscope, a prize of Graham’s, a pink pen I put in my pocket to take to a presentation I made about Grace, and Kleenex from wiping two little noses.

In that moment I just let it soak in that my life is intertwined with these two little people and the man who I share them with. Inescapably so. Funk or no funk. I promised myself I would find a way to relax. I have to. None of it is really their fault. It’s just a lot. It’s just part of how our family works. There are times like this when it feels like Grace is just falling apart and it takes everything we have to put her back together. The world keeps on spinning as we do that…and that line we walk between handling things and being overwhelmed gets crossed. We try so hard not to be defined by any one member of our family, but it happens from time to time. I needed to write about it this time- to remind myself. And maybe, just maybe it will remind me to relax somewhere else down the line.

Joy

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