“Baby Got (a hole in her) Back”…5 Steps

ˈspīnə ˈbifidə/
a congenital defect of the spine in which part of the spinal cord and its meninges are exposed through a gap in the backbone. It often causes paralysis of the lower limbs, and sometimes mental handicap.

“This can’t be happening to us”…”Not our baby”

They say the first step in dealing with loss and grief is denial…isolation.
As I laid on the ultrasound table during our first of what will be many ultrasounds I felt so alone. My happiness (and shock) of finding out we were finally having a baby immediately spiraled to worry and fear…and complete doubt about the competency of Carol, my ultrasound tech. “She can’t be right. This isn’t right. There has to be someone else to tell me this is a mistake. I need to find that person, they will make it better.”
Carol is lovely, by the way. And a fully competent sonographer. I’ve known her for years, worked with her for several of them. I knew this wasn’t the news she wanted to deliver. I knew she didn’t want to be tight-lipped. I knew the last thing she wanted to do was leave me in that room all alone and sticky-bellied to make that call to the doctor that no one wants to make. She still wasn’t right though, I had to believe she wasn’t right.

“Your baby has Spina Bifida…and it’s a fairly large opening”
“Normally a better outcome would be the lower and smaller, the better. Your baby’s is higher and longer. Much higher than we would like to see”
“Paralyzed” “No bladder or bowel continence” “Clubbed Feet” “Agenesis of the corpus callosum” “Termination”…termination.
Stop. It. Stop. It. Stop. Talking.
“No one really knows why this happens” “We see this more commonly in women who don’t take prenatal vitamins for folic acid before they become pregnant.”

I did this.

I did this to my baby…
(Further research showed that even if I would have taken prenatal vitamins, done everything right from day 1, this still could have happened. It can reduce the probability, but cannot prevent it. This isn’t my fault and I know this. Now.)
When ‘experts’ talk, I listen. When ‘experts’ say “You won’t ever get pregnant on your own.” I tend to listen. What would be the sense in taking prenatal vitamins if I can’t get pregnant? They make me gain weight, they make me constipated. They are more expensive than my gummies. All those things could justify why I didn’t take them. But mainly I wanted nothing to do with babies anymore.
After the first in a series of negative pregnancy tests and procedures and bad blood work I couldn’t look at a pregnant woman or a baby for that matter without being jealous. And angry. Anger is the second step. James and I are a happy, stable couple who desperately want a child. Why is this happening to us? It’s not fair.
At the time, I worked in an OBGYN clinic. I talked to pregnant women every day. I saw them waddling down hallways, waddling into bathrooms, wrangling in all the other kids they brought with them, listened to their problems, smiled, laughed, asked what they planned on naming their new baby…smiled. Then I would clock out, walk to my car and cry. Almost every day.
They say repeatedly doing something planning on a different outcome leads to insanity. I felt like I was going to eventually go insane.
When you can’t get pregnant, everyone is pregnant. Friends are pregnant. Family is pregnant. You can’t get away from pregnant women. They are everywhere. They are a constant reminder of what you cannot and will not ever have. I’ve had 2 nieces enter my life during this whole process. They are beautiful, wonderful little people and I love them. But I couldn’t hold them. I didn’t want to…not for long. I would hold them and look at their little hands and watch their little eyes follow mine and then I could feel my eyes filling, my arms weakening, my heart failing. I would gracefully pass them off and excuse myself to a bathroom where I could cry… They didn’t deserve to be part of my sadness. They were innocent. Looking back, this makes me the most sad. I couldn’t get past my grief.
So how can someone tell me that my baby, the baby I’ve longed for, is less than perfect? How dare she even suggest that we terminate? Who was this new doctor I had never met that didn’t know me, didn’t know my husband, apparently didn’t understand who we were?

Bargaining. The third step.
If only I had known. I am an idiot.
We can get a second opinion.
Why didn’t I take those damn vitamins?
Dear God, I will do ANYTHING if you will heal our baby. PLEASE heal her. PLEASE let everyone be wrong. I am at your complete and utter mercy. Please don’t do this to her…don’t do this to US. Just please… And repeat. And repeat. Rinse and repeat.

Depression…my dark little space where I can feel sorry for myself. It’s a place where I can close my eyes and imagine a dark haired little girl running, jumping and dancing. And laughing. Laughing uncontrollably.
It’s the first time I’ve actually been depressed WITH someone else. We were grieving for the loss of our daughter. Our make believe daughter.

They say the last step in dealing with loss and grief is Acceptance. This is the step that found its way to me first, actually.
From the moment I knew what I was looking at on that screen, I accepted Eliza James. I accepted her whole-heartedly. Never in my life had I ever accepted anything or anyone so completely so immediately. She was immediately mine. And perfect. She was half me and half of the man of my dreams, how could she be anything less than perfect? I was immediately protective of her. I was immediately in love.
So I guess the Acceptance step has come full circle now.

I accept the fact that our child has been diagnosed with Spina Bifida.
I accept the fact that despite her mother not knowing she was in there, Eliza James has thrived!
I accept the fact that our child is a fighter. She is strong. She is resilient.
I accept the fact that she is already stronger than me.
I accept the fact that my husband is in love with 2 girls now and I couldn’t be more tickled.
I accept the fact that we have a pink room in our house now, a very pink room with sparkles.

They say that Spina Bifida kids are like snowflakes…no two are alike. That’s the common denominator in everything James and I have researched. We will have no way of knowing what Eliza James is capable of until she decides to show us.
And we cannot wait.


5 thoughts on ““Baby Got (a hole in her) Back”…5 Steps

  1. the title is soo clever!! lol! Last night Scarlett was saying her prayers and she said, “Jesus thank you for “InLiesZa Janes” she is the best baby ever”..when she was done I said well her name is Eliza James and thanks for remembering to pray for her. Scarlett said, “well Jesus knows who I was talking about and I was talking to Him.” KML

    1. Charlotte….that is just precious! And I love how our children can sometimes remind us of things in life….God does know all!

  2. Oh my gosh, I’m n awe of the two of U, a strength like no other, a mission to fulfill, and a love that will conquer all!!!! This sweet miracle is going to be the luckiest little angel in the world to have U as her parents!!! I pray daily several times a day, for healing, for understanding, for strength and for the 3 of U, I love them title, only U Jess could think of that!!! Too precious….U are AMAZING!!! And I love U!!!!
    Aunt J.C.

  3. Oh Jess! And you were worried that you couldn’t “add” to James’ beautiful letter! I believe this piece is just as amazing! You and James are truly special souls…..I thank God every day that you two are in my life…..and that you both are sharing so much with all of us….even very private moments. LOVE YOU MOSTEST…..and I might have to admit that I love EJ just a little more. 😉

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