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Grace has a schedule:

  • 6:15 – Morning meds
  • 6:45 – Out of bed (allow time to wake up before next step)
  • 7:15 – Cath, get dressed, G-tube feeding
  • 10:00 – Water
  • 11:30 – Cath
  • Noon – Meds and G-tube feeding
  • 2:30 – Water
  • 3:30 – Cath
  • 4:00 – G-tube feeding
  • 5:00 – Meds and water
  • 6:30 – G-tube feeding
  • 8:15 – Cath, pajamas, meds, water, snuggle

The rhythm plays every day. Some days we fight it and bemoan it. It feels constraining, limiting. We can’t do what we want because we have to keep it going. We stretch it in places to allow the flexibility we need to get something done, but sometimes there are consequences to that. One time, one horrible time, we’d flexed it so much that we actually forgot to feed Grace. Our girl, normally so easy-going was mad. M-A-D. When we realized we hadn’t fed her we felt absolutely horrible.

On hard days the rhythm is what keeps you going, you know you have to do it and so you just move from one thing to the next, keeping her going and yourself.

The rhythm happens if we are sick, if she is sick, if Graham is sick. If we are grieving, if we are exhausted, if things are changing, if we’re totally over-loaded, or having an easy day it continues.

That’s the daily rhythm. There are others.

Each week she has therapy on Monday mornings and Wednesday afternoons. Each Sunday night I write an email to school about how her weekend was and letting them know what we expect for the week ahead. (When Grace will be out of school, who the nurse will be, if we expect her to be tired, etc.)

She gets an infusion and a shot every 28 days.

Fall and spring mean multiple trips to Minnesota for specialists that we are scheduled to see six months apart. Right now we are able to only have to see those docs twice a year and don’t have to schedule in the middle of winter. It usually means at least two trips to Minnesota and back each season. The docs only practice certain days. All in all to only be heading that way in two seasons is an awesome thing.

I have fed Grace in our bathroom while Graham is in the tub (I took a picture one night because it just seemed so strange yet normal to me in the moment) trying to keep the beat for both of them. I did this knowing ultimately someone would be off by the time it was all over, but trying my hardest to keep things on track.

I was away from the rhythm for a few days recently. Coming back to it feels demanding, un-relenting even. I thought more about how we are just keeping her going in completing these activities. There’s no fun with her in there – except for the snuggle at bedtime. Now that I’ve been home a few days it feels less that way. It is what it is. It keeps her going so we can snuggle, and read, and swing, etc.

We’ve been told that we make it all look easy. I’m never sure how to take that. Is it a compliment? Or is it a criticism that we aren’t as transparent about what it takes as we could be?

I guess it doesn’t matter. It is what it is. It’s how we work. Part of the rhythm of our family.

Joy

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