Joy & Grief

I've known Heather Harper longer on social media than IRL. I've always admired her sense of humor and authenticity that shows up through her photos and short statuses. I felt bonded to her after we both gave birth to children born after our youngest was much older - 'big gap' babies.

Infant loss is not new to me; I often feel strange that I have never experienced the trauma when so many of my friends have. Heather's willingness to share on about feelings of deep sadness amongst the loveliness of everyday life reminded me that we can experience two true feelings at the same time. Heather bravely shares about the grief that engulfed her after losing her son, Desmond.

Joy & Grief

When I was five months pregnant with our fifth child, a boy we named Desmond, he became tangled in his own umbilical cord, which cut off his supply of oxygen; he died inside my body. I only knew something was wrong when he stopped moving. I delivered his nine-inch long, nine-ounce body on July 10, 2016.

Today, I should have a busy almost three-year-old boy running around, and instead have a three-year-old grave to visit.

Desmond’s death was my first foray into intimate, soul-crushing loss. I had lost grandparents and other loved ones, and then three months after Desmond, my sister (and only sibling) died. None of those experiences were like the death of my unborn baby.

It didn’t just happen to me; it happened inside of me. It wasn’t only a death I had to emotionally accept. I had to physically carry out the act of delivering his body into this world, even after he had left it. 

My grief was not linear, nor did it follow any predictable path. Shock for sure, but even days and weeks later, shock would hit me over and over again, is my baby really dead? My son can’t really be dead.

Guilt weighed heavily on me - as any parent must feel when their child dies. Even when your brain knows there was nothing you did or didn’t do to cause the death, you try to find a way to blame yourself. I had too much sugar or caffeine and that’s why he was so wiggly and got tangled. I wasn’t happy to be pregnant, and I wished him away. That one hung on a lot. I wished him away. I wished him away.

I had both physical and psychological grief reactions. My arms ached. I read somewhere that this happens in the postpartum period to remind a mother to hold her baby. But I had no baby to hold. These aches in my arms gave me nightmares of being at his grave and digging up his tiny casket with my bare hands just so I could hold him again.

In my waking hours, I tried to appease these instincts by visiting the cemetery almost daily, and pulling up clumps of grass to bring home, just to feel some closeness to him. Thoughts came into my mind that sounded like my own voice, but were not my own. For a long time, the most logical thought I could have was that I should also die.

I understood starkly that death is a one-way door, and that he couldn’t come back to me, but I could go where he had gone. 

In the midst of our overwhelming sadness, we started trying to conceive again pretty quickly. At almost 38 years old, I didn’t have the luxury of taking a year to sort through my feelings. Beyond that, I yearned to be pregnant again as soon as possible. I needed to recreate different memories in that hospital.

I needed to carry a living child out of there, not kiss the cold tiny forehead of my dead baby goodbye and leave empty-handed. Terrified of going through another loss, I once even joked, “If we ever do get pregnant again, I just want to go live in the hospital so if anything goes wrong, they can take the baby out immediately.” My doctor assured me that umbilical cord accidents are freak and to have it happen again “would be like being hit by lightning twice."

Eighteen months later, we conceived again. At my eight week ultrasound,  we found out we were having twins. There was barely any time to react to that news before learning they were an extremely high-risk type of identical twins who share one placenta and one amniotic sac.

Twins sharing one sac (called MoMo twins) die just about as often as they survive; up to 24 weeks, their risk is a steady 50% either way. They almost always die of the thing that had killed their older brother: umbilical cord entanglement.

Because they are so likely to die in utero, all moms carrying these types of twins check into the hospital 3-4 months before their due dates to be continually monitored. That way, the moment anything gets scary, they can be delivered and then continue their development in the NICU.

MoMo twins are always delivered at least 8 weeks early for their own safety. Should one baby decide to pull on the cords, or even turn a certain way, it could cut off the oxygen supply for one or both. My wish to “live in the hospital and be monitored 24/7” had come true.

This time, the odds were in our favor, and our girls did survive long enough in the womb to be born alive.

Indigo and Violet, our rainbow babies, came three months early, and spent four months in two hospitals before coming home. I was able to be awake for the surgery and had a quick glimpse of each of them as they were whisked off to another room. My doctor photographed their twisted umbilical cords and it became part of my medical record; a true knot at the top, and then twisted together all the way down.

An hour after surgery, they wheeled me into the NICU to see them. They looked almost exactly as Desmond had: perfectly formed, tiny little features, very dark red skin. It was excruciating to see them that way, and impossible to separate my joy that they’d been born alive from my dread at their appearance. In my mind, a baby who looked like that was close to death. 

What followed was four months of numbness, anger, depression, and exhaustion between two different hospitals in two different cities.

More doctors, therapists, surgeons, dietitians, and empty bottles for me to fill with my breast milk than I care to recall. Finally they came home just before Thanksgiving, 113 days after they were born. It felt surreal to have them at home at last, and so much better than having our family split between home and hospital. 

As I have watched Violet and Indigo grow and become healthier and stronger, I still find myself struggling to love them for who they are, not resent them for who they aren’t. That’s a very hard thing to admit because I feel like a better mother would never have those feelings.

People tell me so often, ‘They are miracles!’ It is true, they are miracles. They are one year old now, they weigh 20 pounds (ten times their birth weights). They no longer require feeding tubes or any medications at all. 

Their sweetness has brought immeasurable joy to our family.

Yet I will always know that they are only here because their brother did not get to live his life. Having these rainbows-after-the-storm did not give me the redo experience I wanted so much, but has healed me in ways I wasn’t expecting. Having been through the hell of losing Desmond, I was not so scared as some are when they get the MoMo diagnosis.  I knew very well my girls could die, and I knew I held zero control over it.

When your child dies within the safe confines of your own body, it makes you realize how futile it is to pretend to have any control over their safety: car accidents, choking on grapes, falling down stairs, running with scissors, any of it.

The only thing I did have control over was whether I chose to get attached to the babies and be a little excited about it, which I did. I was cautious at first - didn’t even purchase car seats until months after they were born - because hope is scarier than despair. Hope can be crushed.

I was foolish to think I could smooth over Desmond’s loss with a new baby.

A person, even a tiny person, can never be replaced once they are gone. But I am getting better at balancing joy and grief. I experience both on a daily basis. I’m really good at micro-breakdowns and have at least one every day. Washing the girls’ laundry and thinking wow they are growing so fast, and suddenly sobbing because there are no little boy clothes to wash. Remembering him on his birthday and then celebrating theirs 20 days later.

I don’t try to ‘get over it’ anymore. There is no getting over it, and I’m finally ok with that.