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When my daughter Katy died, she was 12 days old. It was 2011, and my pregnancy with her was so different from my first textbook perfect pregnancy. Katy was SICK. She had an almost fatal complication of pregnancy called fetal hydrops, which is a complication due to hundreds of causes. For Katy, on paper, she was perfect—the amnio, the microarray, all of it—PERFECT. And yet, she was born at 36 weeks SO incredibly sick. Her APGAR score was a 0, 1, and 4. She was, for all intents and purposes, dead on arrival. Were it not for the wonders of modern medicine, I would have never had a single moment with her. And yet, I got 12 whole days. 

Twelve days of pumping my milk. 
Twelve days of snapping pictures. 
Twelve days of talking about her adorable little button nose.
Twelve days of tears. 
Twelve days of ignoring doctors’ orders to rest after surgery.
Twelve days of demanding answers. 
Twelve days of NOTHING but pure love.

And on the twelfth day, at 1:11 a.m., I got to hold her for the very first time as they removed the ventilator and she took her last breath in my arms. 

I thought surely my heart would break into a million pieces at that moment. And it did. But it’s amazing—the human body’s ability to heal—even to heal a broken heart.

A year later, I found myself pregnant again.
At my 12-week check-up, he was healthy.
At my 18-week check-up, he wasn’t.

Fetal Hydrops. Same diagnosis. Same unknown cause.

But because we caught it early, we were able to pursue fetal therapies and placed intrauterine shunts into his chest cavity to drain the fluid off his lungs.

I thought SURELY we deserved a different result.

But interventions are sometimes futile. Especially when your water breaks at 27 weeks and you then have a placental abruption.

Micah was born on Thanksgiving night. He was SICK. Sicker than any baby I’d seen. I lost an incredible amount of blood. It was the scariest night of my life. And I thought I’d already experienced that night. 

Micah fought like a warrior. He spent nine months in the NICU before finally coming home. He came home dependent on O2, g-tube fed, on 13 different medications, and we STILL had no diagnosis.

Those early, long days turned into months, which turned into years. And we ultimately did get a diagnosis: a rare recessive hereditary lymphatic displasia. I took comfort in knowing that Micah beating his neonatal term increased his odds of survival exponentially. Until he was diagnosed at 18 months old with Systemic Juvenile Idiopathic Arthritis (SJIA). It caused dangerously high fevers during flare ups, joint pain so bad he couldn’t walk, a systemic rash, and an overwhelming autoinflammatory response in his body during each flare.

These flare ups increased in frequency, and we spent our lives in and out of the hospital. He was on Biologic injections that cost $1,000/injection out-of-pocket. But he was walking. He was starting to find his voice. He was, for all purposes, THRIVING.

His last new word was “yellow”.

It was the Friday before Mother’s Day weekend, and he came home from preschool that afternoon, and he said “yellow” with that big Micah smile on his face. Mother’s Day night, two days later, Micah spiked a fever of 106. We rushed him to the emergency room, where he was admitted, placed in the PICU, and ultimately intubated, all within the span of six hours. Hours passed. The team searched for answers.

I knew the answer.

At one point, I walked into the bathroom in his room, shut the door, and let it ALL out. I screamed, hit the walls, kicked the door, punched the mirror, and cried the tears of a mother who already knew how the story ends, because she’d lived this story before. Micah was stricken with Macrophage Activation Syndrome (MAS), a rare but often fatal complication of his SJIA. By Tuesday morning, I held him in my arms, and he breathed his last breath.

Micah was three years old.
He died from ARTHRITIS. 

And now, two-and-a-half years have passed. Thanksgiving marked his sixth birthday. He would be in kindergarten. But he’s not. 

I get asked the question quite a lot: how do you remain thankful?

I guess if I’m honest, my response would be, do I?

Do I have to be thankful? 

I’ll be completely honest, I’m NOT thankful for their deaths. I’m not thankful for the fact that I have lived a mother’s worst nightmare. And I am SO not thankful that my oldest son has to grow up without his brother and sister. I’m not very thankful for the PTSD, for the insomnia, and for the panic attacks that have become a part of my daily life. I’m not thankful for the fact that most around me just can’t relate to me anymore at all.

But I am thankful for my time with THEM.

I’m thankful I got to kiss her face, and I’m so incredibly grateful I got to love him and kiss him and put him to bed at night. I’m so overwhelmed with gratitude that he knew I was his momma, that he was the sweetest soul I’ve ever known. I’m thankful for his messes everywhere. I’m thankful for the doctors visits, and for the flare ups, because they showed me what it meant to be a warrior.

My son was a WARRIOR.
And I got three and a half WHOLE YEARS with him.

If that’s not a reason for gratitude amidst pain, I don’t know what is. 

You may also like: 

To the Moms and Dads Who Suffer Loss: You Are Not Alone

This is Grief

To the Mom Sitting Next to a Hospital Bed

To the Mother of a Sick Child, You Are a Warrior

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Mary Michael Kelley

Mary Michael Kelley, M.Ed. MPA is founder of the Mothers’ Milk Bank of Alabama, a nonprofit donor breast milk bank born out of her experiences in infant loss with her daughter and her life with her special needs son, Micah, who passed away in May of 2016. She lives in Birmingham, Alabama with her son Thomas and four crazy animals. 

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