As the the four year anniversary of Isabella’s terminal diagnosis creeps closer, I have been entertaining a lot of the same old questions, but also realizing some new feelings/ thoughts along the way. This whole grief thing is definitely a process, as I have heard it compared to peeling back the layers of an onion- just keep going- getting closer to the core .
December 17, 2019 we had our gender reveal sonogram with our midwife, because we were wanting to know if we were expecting a boy or a girl. Also- our midwife requires this sonogram even if you doin’t want to know the sex so that they can determine if there are any conditions or reasons to be concerned. Which as the case with us. We found out we were expecting a girl that day. But three days later the midwife called to tell me Isabella had “severe brain abnormalities.”
It was Friday, 12/20. It was the lunch hour, but I was still at work. I remember so many sobering details about those minutes that forever changed me. So many questions and all she could do was just read me the notes from the sonogram and let me know I’d be referred out of her care- another blow. Devastation. She had been with me for both other births.
I remember leaving work at that moment sobbing and driving to Mike’s work. He was gone for the day so I drove to his home. He had no idea what I was going to say- and after I told him that our baby was really sick and they don’t know if she’ll be okay or live or have lifelong disabilities- we laid on the couch and cried for four hours.
You may have had your own sobering, gut wrenching, very HUMAN experience such as this. It makes you feel so alone and yet so very human at the same time.
Christmas Eve 2019 was spent for hours with the Internal Fetal Medicine Specialist, into the later afternoon. Moments before Christmas and we are living our worst nightmare. Being told about holoprosencephaly, a word I had never even heard before that day.
I do walk through all of these memories each December. I was angry then; mad that this news had to come during the “most wonderful time of the year…” Like Christmas would never be the same. And while in some ways that is true, I have used this season to just reflect on what we walked through but also what we’ve grown through.
I think at that moment, 39 year old me, 18 weeks pregnant- I knew whatever happened to this child, I would not get pregnant again. I wouldn’t even try. I was 40 years old when Isabella was born. And I couldn’t handle the heartache of losing another baby. Maybe that’s a lack of faith, or negative thinking or not being brave, but I just knew I wouldn’t. I think along with knowing the seriousness of Isabella’s condition, I also was grieving the life I wanted for her, and the loss of having another child ever.
My worst nightmare has always been losing a child, even before I had children, and I was living it. In some ways I often thought, if this can happen, if I am living out this terrible thing, then truly– anything is possible. My heartache could become heavier. My losses could mount up.
Now, I look back and I don’t understand why my tears, and my grief and my anxiety came as such a surprise to my physician. I had been pulled from what I wanted and what I knew and what I was familiar with: homebirth and midwifery care and thrown into a world new to me.
I still believe it was what was best for Isabella and for my own health as I carried our little girl- but it was all so different. The weekly doctors visits and monitoring and waiting rooms with all these happy and healthy (I assumed ) moms and babies.
I din’t want to be there. In this medical environment where I had to always remind people my daughters condition was terminal. I didn’t want my daughter to die. And I knew I would never have a child with Mike. All of this.
On one of my latter appointments I remember my doctor saying he was concerned about me and didn’t understand why every time I come in I am crying….
I alternated appointments with the OBGYN and the specialists weekly, sometimes two times a week for the last 20 weeks of my pregnancy. My daughters condition meant she would not live, or if she did it wouldn’t be very long.
I had toured Hospice. I had been in counseling. I had put my kids in counseling. I didn’t want to be delivering at a hospital.
And yet, he didn’t know why I was crying every time I came in for an appointment.
I was grieving the loss of my child. I knew I’d never have another baby. I knew Mike and I would not have a living child together.
Medically, I was “fine.” Fine as can be expected in a situation such as this, but I don’t get the insensitivity. My tears were justifiable. My being upset does not require an apology. I will never understand this lack of empathy or this question. Even from someone as tenured and educated and high ranking in the hospital – No empathy. Nothing to validate my experience or feelings.
I’ve realized things the more time has past- I never had any Braxton Hicks contractions with Isabella. Not one. I had them from 20 weeks on with my other two pregnancies. I don’t know why it took me three years to realize that, but I guess grief is its own world.
Isabella was breech- feet first- from that first sonogram on. She never turned around. I think her body and my body knew- something wasn’t right. She had to come via cesarean- one, because of the amount of fluid on her brain and how her head was swelling quite rapidly at the end and two- despite my stubbornness, that was our only chance at meeting her and seeing her alive.
While I adore this family we have together, on weekends we are alone, I think what it would look like if Isabella were here. I remember, before that sonogram in December 2019, I dreamed of a busy house and no weekends without kids, but we would always have someone here with us.
This weekend is especially lovely, unseasonably warm and Christmas events are in abundance around our town. It’s simply stunning out, 75 degrees and the leaves are falling like snowflakes. We drove by a park with our windows down and with the screech of the swings you can hear children playing.
We’d be right there: collecting acorns, eating apple slices and catching that girl at the bottom of the slide.