Goodbye forever, 2018

Ringing in the new year of 2018 was a different experience from years past. There was no new, clean slate or promise of hope to look forward to, no lists of resolutions, no champagne or even black-eyed peas.

A big bed rest celebration with Jack and Skooart on New Year’s Eve in 2017. I am not sure, but I bet we were watching Curious George.

Just one week earlier, on the night of Christmas Eve’s eve, Ben, Jack and I rushed to the hospital. I was nearly five months pregnant and something was wrong. We had lost a baby in June, just a few months earlier, and this was starting to seem all too familiar. Jack brought home a stomach bug from his school. We had been up all night with him the night before, cleaning, consoling and trying to contain more mess. On this night, Ben was now looking a little green.

After my mother-in-law had come to the hospital to get Jack and take him to spend the night at her house, Ben and I, teary and exhausted, waited hours for test results while the whoosh of my womb and the unborn baby’s heartbeat played in the background. We watched old black and white movies to pass the time. We held hands, each of us doubly squeezing the other’s hand randomly, an unspoken practice that we have done for years that simply means, “I love you.”

“Doesn’t that heartbeat sound weird?” we’d ask each other over the next few hours. We had recently learned that this baby was a girl, something that both of us wanted. We already knew she would be named after her two paternal grandmothers, taking both of their maiden names, and we would call her Ellie. We knew that her first name, Ellis, would make her easily mistaken for male throughout her life. I didn’t see this as a bad thing. “People will think she is a man when they see her resume,” I remember saying.

Around 2 a.m. we were being sent home with instructions for bed rest. My OBGYN delivered Jack in this hospital and I had held him for the first time in this very room. She knew that it was important to us that we get to spend Christmas at home. I was instructed to lie flat, come back in three days for another ultrasound and then wait for the high-risk pregnancy doctor to call with a follow up appointment.

“I’m sorry Mrs. Honaker. Somehow no one called to confirm the appointment with you. If you can’t be here this afternoon at 3 p.m., then we won’t be able to see you for another three weeks,” I heard over the phone from the doctor’s office receptionist a few days later. Ben was in court and wouldn’t be out in time.  

I was all by myself when a genetics counselor in Alaska, who I met with via teleconference, talked to me about all of the health issues facing our Ellie. I was seated across from a tiny camera and a computer screen when I heard words like Down syndrome and multiple complex severe congenital heart defects. This woman learned from my face that I had not been prepared to hear any of these things. I was just expecting to have another ultrasound and go home to wait for the results. She gave me her cell phone number so I could call her later when the shock started to wear off.

I rode down in the elevator with another pregnant woman. I remember being filled with rage and sadness while my chest was so clogged with fear that I couldn’t even swallow. My ears were hot and ringing and what seemed like one million thoughts were firing off in all directions in my brain. I made it out to the car before I called Ben. I don’t really know what I said or how I said it, but I silently rehashed for months how I should have handled that phone call better.

Everything that I knew about everything felt wrong. The next day, week, month, every moment over the past year has been upside down and backwards. 2018 has taught me a lesson that has been hard: sometimes no matter how much you prepare, no matter how much you plan, no matter how hard you work, there is no way to be ready for the situations that life throws at you. I feel safe when I am prepared. I feel like I am in control and I will work circles around anyone in order to keep that control. In reality, I have zero control. The rug has been pulled out from under me.

If we can make it to February 1, then the baby’s chances of survival will increase… We will be able to see more of the baby’s anatomy in three more weeks… In two weeks, we can compare results with the last test to get a real idea of what her heart surgeries will entail… When she is born, she will immediately be taken from you and sent to the children’s hospital so they can intervene to save her life. I did everything right, just like the doctors told me. I believed that if I checked all of the boxes, then in the end, we would escape this life that I didn’t want to live and everything would be what I wanted it to be.

Ben sent this picture of newborn Ellie after she was settled in at her hospital. This was before surgery, so she does not have a zipper scar yet.

“You won’t be able to hold her, but I will make sure you at least get to look at her before she leaves the room,” my doctor told me as she was already elbow-deep in the c-section. Ellie was on her way out of the OR in the arms of a nurse, already outfitted with an oxygen cannula, when Ben got to look her in the eyes and tell her that we loved her. The anesthesiologist had the forethought to ask for Ben’s phone so he could grab the only pictures of Ellie that we have from her birth. I wouldn’t get to hold her for three more days.

Someone at some point over the last year told me that when the genetics counselor talked to me about what was in store for Ellie, the only person in that room who changed that day was me. It was true that Ellie was already who she was going to be on the day we would meet her. I was the one who had to experience the grief, fear, uncertainty and anger that I lived with for months before she arrived. Once she was born, anger gave way to mostly fear but eventually hope actually started to peek in. All of these feelings and thoughts have kept me up at night, from getting out of bed some days, from answering phone calls of family and friends but have actually even kept me putting one foot in front of the other.

As I reflect back on the last year, I am not sure that I can see the forest beyond the trees yet. I still have more fear and sadness in my heart than hope. I think that parenthood puts new fear in a person anyway, but when you add the responsibility of Ellie’s conditions to all of the times that we had to leave Jack with others while we were fighting for Ellie’s life in the hospital, the heavy weight of the reality of this life versus the life I imagined seems too great.  

By this time next year, I want to feel more hope and joy and ease. I have to, really. I am tired, my patience is too thin, and I can’t keep this up. I want to spend more days at the zoo and the park. I have to find some way to stop trying to absorb all of the pain, sadness, anger, disappointment and tension in the room (as if that is even possible) and be okay with just sitting still. I want fun, not fear, to set my agenda each day with my husband and kids. And, while I do adore every person in the CVICU at Arkansas Children’s Hospital and am beyond grateful that they love my baby the way they do, I sure hope that I spend more nights at home with Ben, Jack and Ellie than I do in the hospital.

Hello, 2019. May we create more this year that we can be proud of.

7 Comments Add yours

  1. Susan Johnson says:

    Beautiful. I am blessed with an 11yr granddaughter who was born with Down syndrome. She has never heard herself described this way so she knows nothing about limits. She has a normal childhood filled with her activities, school, friends, church, swimming. She’s busy! She has a big brother & big sister who treat her like a little sister with no limits. Your days will level out & things will get brighter as your precious little one grows & becomes the child that God has created her to be as she is fearfully & wonderfully made.


  2. Debra Pool says:

    Heather, love that you are sharing this. Beautifully written.


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