This is Eli

A blog about Eli. A blog about survival – and by that, I mean life!

I intended to write about money tonight.

I’ve been trying to make that my Monday habit — writing about getting our financial life in order.

Then Mark went out to watch the Bears game.

I seized the football-free TV zone opportunity to watch BBC’s Call the Midwife, a drama set in the 50s in London’s East End, the poorest sector of the city at that time. It revolves around child birth and lives of midwives who serve the neighborhood from a convent. The series is based on a memoir by Jennifer Worth.

Perhaps it’s silly that I would relate to a TV show based on a book set over a half century ago, but one episode really hit home. So Dave Ramsey can take a number. I started the financial guru’s course at work.

I’d rather write about my son. And themes surrounding birth and new babies from the book and the show that are still relevant.

Eli and mama

A mother in the story had a baby boy, and there was something wrong. Her child had a severe form of Spina bifida, an abnormality of the spinal chord. The spinal chord is sometimes exposed, jutting out from the back. The child from the story would face numerous, serious hurdles, like bowel problems and deformities in his extremities.

The mother fell apart after learning this news. She couldn’t bond with the infant. She refused to walk the child through the neighborhood, or even care for the baby. The father was the same. The mother also liked keeping up appearances, her own and her family’s. A baby with a disorder that revealed itself outwardly didn’t fit.

The nurse who delivered the baby, Jenny Lee, tried to get the family to care for the child. Eventually, the nurse directed them to an orphanage, worried for the baby’s well being.

The parents finally came around. The father, at first, wanted to give the son up. He had a change of heart after visiting the facility. He couldn’t send his son away. He decided to act like he wanted to, like he was dead set on it. That’s when something snapped in the mother. Her her instinct to care for the child flickered on. It had been numbed by shock of a diagnosis. Her love flickered on and then shone like a beacon. The father had bet on it.

The way the show was written, you could tell she was going to be the baby’s biggest advocate.

This isn’t directly applicable to us.

We never had the thought that we wouldn’t care for Eli, because he is different, because he has a disease.

However, just like the mom on the show, I was in shock after I had Eli and learned he had a genetic disease. I grieved after I had a live baby.

It was strange, but the genetic counselor told me this was extremely common.

You think for 9 months you’re going to get a perfect life and a healthy baby from your dreams.

Then you have a baby, and there is something that is out of line with your vision. Maybe it’s a diagnosis, like cystic fibrosis, or Spina bifida. Maybe it is more serious, or less serious.

While Eli was in the hospital, and all we had at home with us was an empty crib, we had to start to come to terms with his diagnosis, that of a deadly lung disease.

I can’t recall what I wrote at the time, but I’ll just confess it now: the grief I felt was very deep. I cried and cried and cried. The only type of hurt I have to compare it to is losing my mom, and yet, it wasn’t the same at all. Because we had a real, live baby boy.

The genetic counselor told me that eventually, our real-life baby would replace the baby we were grieving for, the one who was only in our dreams, our minds. In my perfect picture, everybody was healthy.

Eli real baby came home and he replaced the dream baby had grieved for. Eli is a light, and he has changed us for the better in so many ways, even though he is still very little.

our buddy boy

our buddy boy

Now and again I still feel sad he has CF. It strikes at the oddest times and usually in the rare instances my mind is quiet. A few months back, Mark and I went to a movie. Out of no where, I zoned out of the story on the screen and started thinking about about Eli and cystic fibrosis. I thought to myself “I can’t believe he has this. How is it that he has this? My son has a deadly disease.” I started to cry. Not like those early, from-the-gut sobs that I let loose while Eli was stuck in the NICU. Just watery eyes, silent tears and sadness, because, it’s not right that he should suffer, at all. It’s not fair.

Eli is 11 months old now and I can say those moments are few and far between.

That’s good, because a person can’t live in that state. It isn’t good for anyone. It’s not healthy to focus on what you don’t have, or what you believe you’ve lost. So I try not to. Real life Eli makes that easy for me. He’s a delightful fellow.

The mom from Call the Midwife came around a lot later than I did. I think it’s a good example and a reminder that every person moves through the stages of grief at their own pace. She grieved for the perfect baby of her imagination that never arrived. She was lost and ready to give up her real son. Then, she refused.

“Douglas, Jr., is going nowhere. He’s staying right here, with us,” that mother told the nurse defiantly.

That was the 50s and I’m sure birth defects and disorders carried a stigma more so than today.

And this is now, and now, we have Eli.

But like the defiant mom and dad from 50s London’s East End, we plan to live the best life we can together, and to fight for our beautiful little boy.



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