I’ve been busy this week managing a new medical crisis with one of the kids (as I suspected, our Little Boy has more secrets) and planning a secret weekend getaway for my husband, so I hope you’ll forgive the lack of writing originality as we enjoy some quiet time away together. This is a repost from January 2009. This is what I was sorting through a year ago.
All last year, I followed the story of a little boy named Coleman who was battling spine cancer. His mother is adept at word pictures, writing the way he talks (he referred to cancer as “tancer” for example), and sharing the strength that she draws from God as they watched him deteriorate over the fall and holiday weeks. Early in January, another notice hit my inbox… their Carepage had been updated. My stomach twisted as I clicked on it — the news all through December had been very bad and he hadn’t been doing well at all. My gut told me that this was “the message,” and it was correct. Coleman lost his battle with cancer the night before.
His mom wrote about how they had to leave the house with half the Christmas gifts unopened, just as it was, to go to the hospice center. And how strange it was to return, without Coleman.
Her story reminded me so much of Elli’s last day, and of the morning she died. My mind has returned over and over to those last couple of days, and all the last things that we didn’t know were lasts.
On Friday, I drove her to school because the bus was late. That was the last time I loaded and unloaded her in her wheelchair. It was the last day I met her school bus at the foot of our driveway and saw her grin at me from the top of the lift.
Saturday morning, she woke up early and I found that she had thrown up in her bed. I gave her a shower, a rare thing for me as her daddy usually serenaded her during evening showers when I had no energy left for such things. We took our time, enjoying the suds and the warmth and just getting clean. I bundled her up in comfie clothes and we settled in on the couch for a day of snuggling my sick girl. That was her last shower, and I feel incredibly privileged to have given it to her.
That afternoon, she fell asleep on the couch. Elli never ever ever took naps unless she was sick. So I sat across from her and just drank in the beauty of her sleeping, relaxed, peaceful face.
Saturday night, I missed her last bedtime routine. I had messed up my ankle Thursday or Friday and by that evening, it was pretty stiff and swollen. I made a concious choice to stay in the family room with my feet up while Scott put the kids to bed. I remember thinking that I really should hobble down the hall and participate, but deciding not to. What a selfish decision.
Late Saturday night, I went in to check on Elli and give her some more formula and her night-time medicines. I kept the lights dim, but checked her to be sure she hadn’t thrown up again. She was sleeping soundly, barely stirring as I fiddled with her g-tube. I gave her a kiss and closed the door. The last time I saw her alive.
Then Sunday morning, as I was just getting Little Boy out of his pajamas, Scott’s tone and words shattered our morning routine.
“Joy, Elli is very still.”
Set Little Boy down. Shoot across the hall from the kids’ room to Elli’s bedside. Drink in Elli’s face: eyes not quite closed, body more still than even when she was under anesthesia, skin still warm and soft. Trembling fingers under quiet nostrils, desperate to feel a whisper of a breath. Nothing. Feel her chest for a heart beat. Still… for the first time since she was 4 days old. We had missed her last breath, her last heart beat.
Giant frantic footsteps toward the phone. Dial the dreaded but hopeful numbers. 9. 1. 1.
Scoop her up out of bed, rip off leg braces… all for the last time. Chest compressions counted in sobs as sirens near.
Throw on clothes and grab medicines as the EMTs do their work. Last surreal ride with her, sirens wailing my prayers through the beautiful dawn morning. “Please God, let this be clear one way or the other. Please take her or heal her. Please don’t force us to make decisions about life support.”
Watch the EMTs continue working on her, but know by the way they were working that she is already gone. Think, “Is this really it? I thought it would feel different somehow.”
Then. It stops. Kind and sorrowful doctors and nurses tell us she is gone. We sit with her as her skin loses its life-warmth. But we know that the child we love is not there in front of us anymore. We walk out of the hospital. Without her.
We are those rare parents who experience the end of our task of raising a child. It is finished.
Despite the tears and the pain of it, I still cherish those lasts. And I look forward to the day when I meet my daughter again, in her new and able and perfect body. And we begin a whole series of firsts in the life to come.