Archives for posts with tag: schedule

IMG_5585I am looking forward to summer.

I want lemonade, fresh fruit, berry crisp, miniature golfing, and the feeling of the sun and heat soaking in.

I want less responsibility. Fewer things to juggle. A break.

To get to summer we’ve had to get past the last few weeks.

Grace had surgery last week in Minnesota to revise her mitrofanoff. We are hoping that will be her only surgery for the foreseeable future! She’s recovering well.

While we were in Minnesota Grace got all hooked up for an EEG. We were disappointed to discover that Grace’s EEG (a study of her brain activity) hasn’t shown any improvement since fall.   Her brain continues to experience a lot of back ground noise. We’d really thought it would be better after the addition of a new medication. In the last few months, we’ve seen better focus and more emotion. We’ve had her smile at us more. Her looks and eye contact have been so much fun. Her doctor reminded us that she’s not her EEG- if we are happy with what we are seeing that’s what counts.

Amid the highly scheduled past few weeks, we were alerted that there’s potential concern for her sodium levels so we are following up with some additional testing.

It’s easy to get trapped in the thought that Grace is all the things about her that we monitor and watch so carefully.   We have to remember she is none of those things. She’s a girl who loves to swing, loves music, loves to play, digs sparkle, and has a stubborn streak.

I saw that girl after her surgery. All snuggled under a blanket.

Before surgery I found myself overwhelmed with all the things about Grace. Her scars. Her medicine. Her past experience with anesthesia, etc. There is a crazy amount of information to pass on to the team of people we are entrusting with her care for an hour and a half.

I want a summer for Grace too. She deserves a break. We’ll never be rid of all the things about her. She’ll never drink lemonade or enjoy berry crisp. But she loves flowers, swinging, getting wet (as long as the water isn’t too cold) and being outside on a beautiful day.  We’ll work to spend the summer letting those things be the focus. I look forward to it.




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.


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… 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.