Archives for posts with tag: care

2B692091-A0AD-4844-AFD3-6755D0873689Summer has officially begun. Grace and Graham were done with school last Wednesday. I’ve unpacked a lot of the school stuff. Communication book, drumsticks, catheters, formula, diapers and unused pencils for Grace. For Graham a video showing kindergarten highlights, and so much of evidence of all he learned over the last year. We puzzled through some of the spellings in his work and marveled at his drawings, letters, and numbers. He learned so much in kindergarten!

I’d say their only year together in the same school turned out to be a success. Both of Grace’s teachers mentioned that Graham frequently sought them out to say hello. On the day he used his dragon tracks to be principal for a half a day he came home and reported to us that he’d been able to choose some classrooms to go to with the principal. He went to his own kindergarten room, but he also asked to go to Grace’s general ed room. When Grace wasn’t in that room the principal took him to the special ed room. And when she wasn’t there they went to the band room where Grace’s class was hanging out because the air conditioning in the special ed room was broken. I thought it was very cool that Graham used the opportunity to look for Grace.

For her part as a 5th grader, Grace got the chance to make afternoon deliveries to all classrooms. Evidently, they frequently peeked in on Graham.

There was one day this year when I dropped Grace off at school after therapy and was stopped by the school nurse asking for me to come to her office as soon as I had Grace settled. And then she winked at me. After another trip to the van to get the rest of Grace’s stuff and a kiss on her cheek goodbye, I reported to the nurse’s office to find Graham there. His stomach was hurting. But after a few hugs and a snuggle, he skipped off to kindergarten. I waited for the nurse to call me that day but she never did. He was fine. I was so grateful to have had the chance to be there for both of them that morning.

On Wednesday I attended the end of the year assembly. After songs to make me cry the siblings of 5th graders were offered a chance to line up in the middle of the gym. I saw Graham’s kindergarten teacher help him get into place. Once everyone was lined up the fifth graders “left the building” through a tunnel of high fives. This is what I’ve come to understand is the 5th grade clap out. Grace went second. It all happened so fast I got zero pictures. Graham told me later he got tons of high fives but none from Grace or her nurse Garrett. He was a little sad about it –but glad he got to be right up front.

As I left the gym after her in a hurry I walked by and made eye contact with Grace’s third-grade teacher and then her kindergarten teacher. Obviously tearful I only managed quick greetings–torn between getting to my girl and telling them one last time how much I was thankful for them I ended up following my girl.

And when I got to Grace her nurse and her aide were in hurry to get her water and get her cathed and get her to the park.   This huge moment was done. Life was going on. I walked out of the building crying and cried most of the way home. I swear a few trees cried with me as the wind blew and small leaves blew down around me.

Grace was done with the school she’d been at six years. “We have them the longest” her special ed teacher had said when we had Grace’s transition meeting to middle school. “It makes it harder to let them go” the speech therapist continued.

I’d been up to 11 the night before her last day trying to find words to thank so many people on Grace’s team the past six years. People who have loved her, cared for her, spoken for her, assured she wasn’t passed over. They’ve been with her literally half of her life. How do you thank people for that? And the thing is…the thing that makes me feel so helpless is that I imagine I only have an inkling of what she experienced there. That longing for communication, for knowing what it meant for Grace to be loved by them in what I’m sure were a million small and big ways escape me.   I’m sure that I’m not yet done processing what it means for Grace to be moving on from them. I’m sure there is more crying in my future on the topic.

But to bring this to an end I’d just say that on their last day of school in the same building I missed the opportunity to get a picture of them together. It didn’t work in the morning because they don’t get ready at the same time. After school Grace had a wheelchair appointment, Graham had taekwondo and that was that.

I’m so grateful they had their year- that they experienced sharing in this way this one time. I’m grateful for all the people who were in each of their stories their kindergarten and fifth-grade years.

And now we begin summer stories…

Joy

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calendarTwo weeks ago I wrote an email to my boss telling her that our home health nurse was leaving and that the nursing agency had told us there’d be no one to care for Grace until at least July.  We were going to be on our own for at least two weeks.

“That’s the last thing you need Joy” came the reply.

She was the first person I’d told who hadn’t said something about how good things will come out of this.  In a way it felt like she was the first person who’d really heard what I said.

A home health nurse – a really good one anyways – is an amazing creature.  Capable of coming into your home, caring for your child, speaking for your child (in our case), doesn’t notice the dishes in the sink, and doesn’t mind that there is a little brother who needs attention too.  That nurse sees you when you are sick, knows when you are behind on laundry, and gently tells you that Grace needs more bibs or extra clothes at school.  That nurse sends you pictures now and then so you can see what Grace is up to.  That nurse never minds that you call to check in because something about Grace just wasn’t quite right the night before.  That nurse takes care of Grace with such a combination of gentleness, enthusiasm, caring, attentiveness, and love that you never question Grace is being cared for.

We are having to give that up.  There’s a loss there.

A new nurse is a new nurse.  There will be lots of things to figure out.  Someone else will need to learn all the ways a seizure can look in Grace.  Someone else will have to learn the differences in her vocalizations.  Someone else will have to learn to let her go so she can walk on her own.  Someone else will have to learn the cues Grace gives us when she’s not well.  Someone else will give her medicine, feed her, diaper her, and all that goes with that.

Selfishly there’s also a loss of vacation time that I’ve been mourning.  The only time I’ve taken off in quite awhile has been to take Grace to doctor’s appointments.  We go to Minnesota a lot for those appointments but I wouldn’t exactly call it fun or relaxing.  My hopes of a few days just to get away will have to be delayed.

And in one moment of grief I thought to myself that maybe this was the universe telling us that we can’t take care of her.

My mom and dad are coming in, saving the day in the amazing way that they do.  They have graciously worked it into their retirement (which is incredibly busy and sounds wonderful).  I hate to take them away from it.

We will make it.

A new nurse will learn.

It won’t be the same.

Graham is really struggling with the change.  He’s asked for the nurse each night.  He’s been very concerned that no one else would be able to find his favorite episode of the show “Super Why”.  He likes “the puppy one.”

The thing is the nurse knew that and before we’d be there she’d have the puppy one all ready to go on Netflix.

Such a thoughtful thing that made life easier.

Joy