Archives for posts with tag: snuggler

file-15If my life had a soundtrack I believe the song “Everything Changes” from Waitress would be heavily featured. The first part that truly speaks to me goes like this:

“Today’s a day like any other
But I’m changed I am a mother
Oh, in an instant
And who I was has disappeared
It doesn’t matter, now you’re here
So innocent”

And a few bars later these are the words:

“Two tiny hands, a pair of eyes
An unsung melody is mine for safekeeping
And I will guard it with my life
I’d hang the moon for it to shine on her sleeping
Starting here and starting now
I can feel the heart of how

Everything changes.”

As I look back I see there are no entries in Grace’s blog since her birthday. Frankly, it’s because Grace is changing and Kevin and I are trying to keep up. Her seizures have been messing with her quality of life more than we like. She’s been considered “malnourished” for a while; I hate that label it makes me feel like a horrible mom. As she gets taller she’s been deemed further malnourished. (Ugh) Her sodium levels are still low, and the doctor leading that arm of her care is discouraged he can’t diagnose her with something that explains it. Grace’s pediatrician and I had a good chuckle over that; Grace’s pediatrician long ago realized that Grace defies explanation and he is good with that. It’s one of the reasons we love him. Grace has had so much blood and urine tested for all kinds of levels it’s unbelievable. It took two IEP meetings to get her school plan figured out. One of the lenses of her glasses kept popping out. She’s outgrown the flexible soft glasses we’ve been buying her. And there are other things I can’t write about, but I believe I’ve given you a taste.

So, we’ve changed her medicine. We went up on one and we are adding one. The medicine we are adding is called Epidiolex. It’s derived from marijuana and FDA/DEA approved. It does not contain anything that would give Grace a high. There are only 10 pharmacies in the country that have access to it. Once we had the prescription we waited about six weeks for it to actually arrive. When it did we found out there were additional steps we needed to take to make sure we had all the documentation we need to travel with it. We have her on the lowest dose right now and will gradually be increasing her dose over the next month. I’m anxious to see what it will do for her and am daring to be hopeful that she could have fewer seizures, and if not fewer seizures then easier ones for her to bounce back from. As with any new med we second-guess ourselves about whether or not we are doing the right thing. We’ve known that a cannabinoid medication has been an option for Grace for a long time…but until now it had never been legal in the form we needed it to be. Cross your fingers.

We’ve changed her formula. No more pediatric blend for Grace. She’s now getting a formula for adults made primarily from whole foods, but we don’t have to do the mixing or blending. We now have to feed her every two hours when she’s awake so she can get the calories she needs. It’s intense. We are adjusting. The flexibility we had seems gone. It’s taken time to get her to the right amount and there have been multiple calls and emails between doctors, the dietician, and home care nursing all with us as the hub in the wheel between everyone to figure this all out. The amount of formula we get from the supplier to feed Grace in a month is exactly to the drop what we need to feed her. If we spill she misses calories…No pressure. Once we see how her sodium does, and if she plumps up a bit, they’d like us to introduce some blended real foods. That could be amazing.

Kevin, master of research, found glasses. He found a place willing to get a few pairs onsite for Grace to try. We paid for the transition lenses so sunlight isn’t so bright for her. We want her to hold her head up in the world- even outside! We are anxious to see how the glasses hold up to Grace’s abuse.

Through all of these changes, Grace just keeps going. She complains at times, but I have to think if I were her I’d be complaining more. One thing that has brought me comfort through all of this is watching her sleep. We watch her at night through a video-based baby monitor. She has slept the same way since she’s been little. She curls up on her right side. She tucks her hands under her right cheek and she sleeps. When you put her on her side in bed she usually just snuggles right in. I can easily imagine her little when I watch her sleep. She’s so beautiful and I don’t see ability or disability when she sleeps, I only see Grace.

And in those moments the song plays in my head. In an instant she was ours. In an instant we got a diagnosis. There were other instants she got more diagnoses. She is innocent. Her unsung melody could easily be lost to our fear or our complacency. We can’t hang the moon but we can try our best to do whatever we can for her. We recommit everyday to Grace because she is here.

Joy

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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

14-Harris

I was listening to my ipod today in shuffle mode. Ben Folds’ “Gracie” came on.

It’s a song about his daughter..her growing up.

It was the end that really got me – he sings

“there will always be a part of me, nobody else is ever going to see but you and me, my little girl, my Gracie girl”

I got to wondering what part it is of me that my Gracie sees when the two of us are alone.

Sometimes it’s my frustration that I’ve been peed on- again.

Sometimes it’s kisses on her cheek.

Sometimes it’s tears.

Sometimes it’s singing in her ear.

Sometimes it’s a prayer.

Sometimes it’s me telling her it’s going to be ok.

Sometimes it’s me saying “ I got you, I got you, I got you” as we wait for a seizure to pass.

Sometimes it’s me begging her to cooperate.

Sometimes it’s me telling her how much I love her.

Sometimes it’s just quiet- a snuggle- the longness of her body somehow still fitting into the shortness of mine.

Sometimes it’s me telling her “I’m almost done- I promise” as I comb her hair or brush her teeth.

Sometimes it’s me asleep beside her.

My Gracie has seen me:

Desperate and sad.

Brave and confident.

Madder than I ever knew I could get.

Exhausted.

Impatient.

Thankful.

Vulnerable.

Laugh with pride.

Experience wonder.

Experience grief.

Embrace quiet.

Experience love.

Experience doubt.

Try, and try, and try again.

I value very much that part of me that Gracie sees that no one else does. My thanks to Ben Folds for pointing it out.

Joy