Slipping into Madness

H1: And the Moral of That Is

The Duchess does seem to find a lot of morals in things, so tell us a non-fictional event that left you with a most important moral you’ll never forget. (<1000 words).

Four years ago last October, my sister Rachel had twins, Lily and Laurel. Even before they were born, we knew that Laurel was going to have physical issues—possibly spina bifida. She was not moving her legs at all, but because it was a multiple birth, the doctors couldn't get a good look at it. This was Rachel's sixth pregnancy, and she was able to carry the twins nearly to term, which was good.

Rachel was hoping not to have to have a c-section, mostly because she doesn't like hospitals.

About a week before the twins were due, Rachel was brought to the hospital after an appointment and had the twins by c-section because the babies were exhibiting distress. Rachel wasn't sure why she needed to have a c-section, knew that she might never know, but she was ready to be in the hospital for that even though she hated the idea.

I was at home with the other four kids aged twelve, nine, six, and three (I said six pregnancies, the fifth child was Caleb who died at five days). And of course, there was an information disconnect between the hospital and me.

But the first thing we knew was that Lily was doing well with Rachel. Laurel, on the other hand, did not just have spina bifida. She had caudel regression syndrome.

Her father, Ed was told the diagnoses as they came, blow after blow over the course of her first days in the NICU at the Children's hospital, and he would share with Rachel, who was in a separate, Women's hospital, and then with the grandparents and me at home.

Her spine ended above her pelvis. She had fluid on her brain. She had a hole in her back where her spinal cord was dangling out. She had no functional genitalia, in fact, they couldn't determine gender at birth. A DNA test was required. She had no functional end to her digestive tract. She had only one kidney that was shaped like a U. They were told soon after her birth that she would be in the NICU for at least eighteen months while she had surgeries and was gotten to a point where she could come home. If she came home. Ed and Rachel had lost a child before. They knew they could handle anything but that.

In stages, Laurel had operations. In fact, as the doctors worked, there was always a worst thing that needed to be handled next. She had a stint in her head to stop the pressure on her brain. She was turned over and had an operation on her spine put it back where it belonged. Next a hole to drain her bladder and a colostomy to handle bowel movements. Step by step, she was getting healthier.

At two days, Rachel and Lily came home long enough to move in before they headed back to spend time with Laurel in the NICU. It was important to the family so she was never alone in the room. She was growing. She was eating. We knew from the start that she would never use her legs, but she was on a healthy curve. Finally, just before Thanksgiving, at only six weeks old, Laurel came home against all odds.

And four years later, she gets around. She plays with her siblings. She cuddles and climbs and sits and sings and talks. Rachel's home is a chaotic place, but no one ever steps on or over Laurel.

And the motto that I learned in the first six weeks of her life: Take each day as it comes. or There's always a path forward. or Focus on the next issue. or maybe: believe in miracles.

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