Loss for words and Fan Art

This will be short and sweet. Nate is taking a turn as the solo caregiver tonight and that means Angela and I are home together for one night. I’m writing this on my phone, and I hate doing that!

I was on duty last night and for the most part it was uneventful. Summer went to bed and I stayed up till after midnight to make sure I was not going to be neglecting her if she woke.

The room at night is silent except for a rainfall noisemaker. (Her favorite setting according to Nate) and we leave a lamp on but cover it with pillowcases to dull down the light at night. No TV and no music are played. We want the room restful.

The nurses do their normal rounds at 2 and 4:30 (ish) which is mostly moving Summer around and checking her vitals. When they came in the second time, I had a hard time getting back to sleep. I thought Summer might be “awake” awake. So, I put some more pictures on the Instagram story which has become my selfish indulgence of dragging out old pictures.

From then until 8Am it was tiring 30 minute mini-naps that had me feeling more tired than when I went to bed at midnight!

I checked on my girl and she was not really responding to my chatter. She was continuing to move her hands around with the same nervous energy-type motions that have been going on over the past few days.

I went into the bathroom to change (not for summer’s eye protection, but to save a nurse the embarrassment!). When I came out, she looked at me as I walked in front of her. I took that as a sign to say good morning.

Instead, it turned into me pulling her hands from her chest. Summer had been pulling at her access needle and the protective layers were all balled up. I kind of scolded her by saying “stop that”. She just shot me a look and went back to wringing her hands together.

I told the nurse what was up…. They were going to be delayed on meds unless we were ok with a needle. I told them to wait until the access could be repaired since she wasn’t complaining of pain. Later that morning, a new needle and access line were installed. I don’t think she messed with it since.

Unlike the last few days after waking up, I did not get those moments of clarity I love to see. I’ve been lucky on a couple of mornings to feel like I had Summer in a small capacity in the room. Today, everything was new and she would do her “tiks” over and over.

Angela came in later and we started making plans for the visitors list today. Great visits today with friends from out of state to an old teacher from St Joseph’s.

I played a game in the lunchroom with Mark, Tammy and Nate when the room was a little full.

Tonight, we had a good talk with Mom and Dad in the waiting area. Then, Steve and Lisa watched Summer as we went over to hickory river for some dinner. (No booze on the patio!)

About 9:30 we left Nate in charge. No parties we told him.

Like I said, unlike most days to the point. I did not see the vocal and responsive Summer. Yesterday, even when between painkiller treatments…. She had a few shining moments. Today, not so much.

I think she said “hi” to Grampy.

And in a tear-jerking moment, she told Nate she “loved him”. Nate had been rubbing her head and playing with her face when she asked for a kiss and said “I love you”. It was a tender moment that had me believing in true love. How lucky she was to have this guy in her life? (Sorry Nate, but that was an awesome moment that I was glad to witness!)

Nate bent over and kissed her on the mouth. As quickly as you can say I love you was how fleeting the moment was. After a few minutes the attention by Nate she was no longer talking.

Will we get any more “lucid” moments? I hope so.

The tribute image. Jenive had come up with this and we have been fine tuning it ever since. I suggested the “adventurer” in the bottom of the image as a suggestion of Summer’s personal spirit.

So.. What is this all about? It’s great for a Facebook profile pic. But, who makes a sticker/decal/patch when their child is in the final days of battling cancer?

Honestly, it seems kinda weird to me as well…. But I am getting used to it. Our last 10 years in traversing the country and the world have always brought us back home with travel souvenirs and a little bling to show off where we have been.

With that in mind…. Just like shopping in the gift shop, I want postcards, badges, and patches to be available to keep spreading news of her life after it is over. You can pack a lot of life into 21 years if you try and I want that to be the message.

I even reached out to a guy who makes Jr Ranger badges out of wood.

Tomorrow we want to get back early for Nate…. So, I am signing off. Thanks again for thinking/praying/doing for us. I am adding “doing” because it’s a thing…. And I am blown away every hour by something someone has done out is kindness to Summer’s situation.

Thinking/Praying/Doing

We are surrounded by some of the best.

I will leave you with this. More creative material from people who know her best. Mrs. Holly from DeeMack was her chemistry teacher. Years ago, in a project that married art and science together…. Summer presented Luciferin. The chemical compound that makes lightning bugs get their glow.

Summer dreamed it up and I helped her with wiring etc.

As you can imagine, she knocked a project using art and science together “out of the park”.

When the project was over, Mrs. Holly asked if she could keep it to give future students ideas. (Or anxiety that they have to overachieve! Lol)

Here’s a picture.

She also told me she was moved by Summers Cancer Journey to write this Poem:

Summer time

Fireflies
They light the skies
Their twinkle and shine
Magical in the Summer time
They flash to create with their mate
They bring the world love and not hate
Working to bring a group together
Flashing in Summer time wherever
But then the seasons of change come in
A change of a season that feels so grim
The Summer time that will change and end
But the seasons always change my friend
Leaving behind the lights of the past
The memories will always last
Summer time is coming to a close
As seasons change our love for Summer time shows
We are so lucky to have been
In her presence and see her grin
She flashed her light
She sure shined bright

Thank you God for blessing us with Summer time
Please be with us as we watch the sign each year
As fireflies begin to appear
Our Summer time will come and greet us
Her smile her grace
Her welcome greeting in this place
As for now we say good bye
Summer time it’s time to fly