the last two weeks…

April 11^th marks 8 months since Isla died.

Every reminder of Isla’s sweet face and contagious laughter sends me back to that last couple of weeks we shared. (I spent some time scrolling her mama’s Instagram page this week.) Many words may yet be written about the last few days of Isla’s short life. When I face the blank page, it’s almost as if I believe if I don’t write it, I can pretend it never happened.

I suppose there was a gift hidden in the fact that we knew it WAS her last few days. Once she came home from the hospital in July, and especially after the family’s quick trip to the ocean, we all knew what was coming. Every single interaction carried this weight of finality, our desire to remember our girl – each grin, every hug, every song and dance. I found myself paying better attention. I made a list of things she said and took lots of pictures.

We traveled to Milwaukee on Friday, July 24^th and checked into an AirBnB so we’d be available as needed. When we got to the kids’ house, we were immediately entertained with a magic show created and performed by Sawyer and Isla. She hid me behind a blanket, tapped it with her magic wand and declared, “AS YOU CAN SEE, Nana has disappeared!” Sawyer would remind her how to pronounce the magic word (I’m pretty sure it was alohomora from Harry Potter) and the audience would cheer as I appeared again by lowering the blanket. She did not tire of that game, playing it on repeat till dinner arrived. So many sweet hugs and giggles in between each “disappearance.” We loved having a photo shoot with the family on Saturday, and afterward, Isla and I shared my silly “Shall We Dance?” song, which I made up when her daddy was little.

Our last dance…

We didn’t know at the time, or exactly how, but that weekend was our last two days of “normal” with her.

One of the most difficult challenges of those last two weeks was that in response to one of her meds (and/or the frustration of not understanding what was going on in her little body), Isla became very insistent that only one person at a time (sometimes for an entire day) was “her person.” There were six adults to choose from, and 3 or 4 of us were usually in the house at the same time. But Isla called the shots on who would be her partner for the day, and it was so hard for those not chosen. Imagine traveling across three states to see her and having her push you away. Imagine her mama and daddy pouring their life and soul into her for 3.5 years and seeing her push THEM away. It was excruciating.

The Lord is close to the broken hearted; he rescues those whose spirits are crushed.
Psalm 34:18
Oh, how we longed for that rescue.

“My day” was Friday, July 31^st. It started out with Daddy as caregiver while I was cleaning the kitchen. But mid-morning, Michael asked me to take a shift, so Isla and I started playing video games. Thank goodness for her skill – it took me forever to figure out! We helped SpongeBob make pancakes and serve them in his restaurant. We popped bubbles with Daniel Tiger and chose party decorations for “Neighbor Day.” (One of those decorations was an off-season Christmas tree and Isla announced, “I get to put the star on top!” She had, in fact, had that responsibility the previous December, after all.)

Later, Miss Laura (music therapist from Children’s Hospital) came by to play. Not to be content with merely singing and playing instruments, Isla took the hand drum, turned it sideways as a shield and said, “Let’s play good guys and bad guys. Me and Nana are the good guys, and you [Laura] are the bad guy.” She hid us both behind the drum and whispered conspiratorially to me “I’ll protect you, Nana!” We did, eventually, get around to singing a few choruses of “The Itsy-Bitsy Spider,” “Old MacDonald,” and playing “Match the Beats” with the drum. After copying Miss Laura’s rhythm a few times, Isla flipped the script with “Follow my lead!” and enthusiastically dove in to calling the shots.

That was our Isla.

After her nap, she was ready for stories. Reading aloud is a joy of mine, and always, especially with Isla. One we used to share at the hospital was The Hello, Goodbye Window, a story with a girl just about her age. Isla had the whole book memorized and often finished my sentences or corrected anything I missed. We also made a recordable story book for her and instead of saying “Granddaughter” I recorded “Isla – you make the whole world grand!” Evidently she remembered that, since mama later caught a random video of her saying, with tremendous delight, “I make the whole world grand!!!” And she most certainly did.

On this particular day, she was so cuddly and affectionate. “Can I lean against you, Nana? I love you, Nana.” I obliged, of course, as we read about Curious George and Daniel Tiger. One story included a picnic at the park that was threatened by bees, which led to an impromptu game of pretend. She would pinch her finger and thumb together, buzz it around in front of her and then “sting” me. Then she would give it a kiss to make it feel better and ask me to do the same to her.

Later that evening the family had friends join us for dinner and we were playing outside with the kids. Isla was in the swing and started to act a little sleepy. I was pushing the swing, but she seemed to intuit that we were getting ready to head back to our place for the night.

“Are you still behind me, Nana?”

Yes, sweet girl, I’m still behind you.

“Can I give you a kiss on the cheek?”

Of course, you can.
(I came around to the front of the swing and crouched down to oblige)

“Now you give me one.”

You bet.
(I loved how Isla could direct a scene with clarity and authority!)

“I love you, Nana. I don’t want you to leave.”

I love you too, Isla.
(I don’t want you to leave either.)

Our last words.
Our special day.
One special day in the last two weeks of a terribly long year.