Before I had children, my cousin lost his third child to anencephaly, a condition in which the forebrain does not develop. Erin lived for four hours before succumbing in the arms of her parents.
I remember when my mother called and told me about the diagnosis. I was stunned and grieving for my cousin and his wife. “Could I survive that?” I asked my husband. At the time, I couldn’t fathom a world in which I said goodbye to one of my children, even though I had none yet.
Then my daughters were born, and the love I had for them shook my world. Then I knew that I would never come back from one of their deaths.
“I could never survive that.”
It’s a statement that loss parents hear all the time. We listen to it along with “you’re so brave (or strong)” and “I don’t know how you stood it.” Frequently, those of us in the child loss community complain about hearing these platitudes.
We’re not brave or strong by choice.
And we did survive it.
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But there’s a secret amongst us in this hellish club.
We think those thoughts too.
I had the great misfortune of coming across a Facebook video post that depicted a toddler drowning in an inflatable pool while her mother texted within arm’s reach. And I thought, “I could never handle that. I couldn’t survive it. The guilt and what-ifs would kill me.”
Because it’s true, fathoming the experience of another child loss parent is difficult. Though we’ve all lost children, we lost them in different ways.
Every story is unique. Every goodbye is different. While we can understand another loss parent better than others, there are still things we cannot understand.
With my son, we had time to tell him farewell. He opened his eyes, and he looked at us. We were able to shower him with our love. We held him as he slipped away.
Holding that sweet boy while he left this world was one of the greatest gifts I’ve ever received. Despite having to make the horrible decision to turn off his ventilator, I was grateful for the time we had and for the knowledge of what was to come.
We were not shocked by his death, not in the way that poor toddler’s mother must’ve been.
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I hear other stories of child loss – SIDS, accidental death, and even murder, and I think “I couldn’t stand it. At least I was able to say goodbye to my son.” It’s a paradox because I know the truth.
I could survive it. I would survive it. The human heart can stand these losses, somehow.
The human heart is resilient.
I will never forget my son. I will love him forever and will never stop missing him and yearning for his presence.
And still, I go on. I raise my daughters, teach them about love and laughter – and also about loss, because it is a part of life. And we will all suffer loss. Hopefully never a child.
But loss comes for all of us.
You will survive it. You will be “strong.”
Trust me. I am proof.
——
Photo credit: Viktor Yakovlev
I am mother to three children, two beautiful girls and one gorgeous baby boy, James. James was diagnosed with trisomy 18 at 32 weeks gestation. He was born Aug 1, 2016 and lived 154 amazing days cradled in the love of his family. He died on Jan 2, 2017 due to complications of pulmonary hypertension. Because of him, I learned that a mother’s love has no bounds. My grief is enormous, but only because my love is enormous.
Our sweet son is buried in our backyard. We brought his body home and had a home visitation and home burial. This was facilitated by a Cuddle Cot. Due to this, our baby boy never left our arms. He was with us from the moment he was conceived until the moment we gave him back to the earth. Since his death, we have been trying to educate others about the beauty and healing of a home burial.
We live in western NC. I am a veterinarian and mother. My husband is a mathematics professor. We are expecting our fourth child, a baby girl, in July 2018.
That is amazing information about the Cuddle Cot. I had no idea you could do a home burial.
We are military, so it would not have been helpful for us, but the cot itself would have been nice to have in our room. Thank you for sharing. Our daughter lived for 4 days on a ventilator in the NICU. I wish there has been more privacy.