Hope
Today marks the six month anniversary of Isla's death. The year has gone by so quickly. I keep remembering how joyful life was this time last year. We knew the baby would have medical problems, but it was a season so full of optimism and anticipation. Death was the farthest thing from our minds.
Dan lost both of his grandmas last year, within six months of each other. We were fortunate to attend the funerals of both Nana and Grandma, and a story that Jim told us about how Grandma Johnson passed was so inspirational. Eleanor was a tough lady, lived alone and mowed her own lawn on her farm in Clifton. She suffered a stroke and was discovered by her daughter the next day. After some time in the hospital, Eleanor's five kids brought her home, where they knew she wanted to be. They spent time with her as a family, and when she was ready to go, she was in her own house that she had built with her husband, surrounded by her kids and grandkids and great grandkids. They stood around her bed and put their hands on her as she took her last breath.
At the time, we wouldn't let ourselves think the unthinkable. The only little nugget of usefulness I ever got out of the "What to Expect" books was that if I braced myself for the worst, I would just miss out on whatever time I did have with her. There is just no way to prepare for losing a child, so I elected not to. I didn't see it as denial, but just embracing the positive. From the day our baby's heart condition got diagnosed and we chose to take the long road, our heart doctor told us, "from here on out, we focus on the positive". So we didn't think about Isla dying, but instinctively knew that in our arms, in a calm place, surrounded by love was the best way it could be, if it had to happen. And that's how it was.
The day she died, we held her nonstop, talked to her, told her everything we possibly knew about life, and covered her in kisses. We took a lot of video the last 48 hours that we are still not ready to watch. The photos are still hard to see. The loving nurses and medical staff that had gotten to know her so well over the previous 5 months held vigil in the hallway for the long hours of that Monday morning. When she took her last breath at 1:01pm, she was unattached to medical equipment, and she was peaceful and in our arms. When we eventually opened the door to her room, doctors and nurses came in to pay their respects, and we didn't put her down for some time after that.
So, we got our wish. We got to be there when she was ready to go, and it was serene. We got 5 months with a child that wouldn't have lived a week if she had been born a couple of decades earlier. Best of all, we are able to give hope to the next family--our doctors learned new techniques from treating her. Maybe the next family will get 6 months, or 6 years, or 6 decades.
I love this picture of Isla right after she successfully ripped her feeding tube from her nose, sometime in April. She was so jazzed about getting it out of her nostril and just couldn't stop grinning. Her little body couldn't keep up with her spirit. She continues to touch so many lives, and we love and miss her so much.
