The Pain and the Gratitude


It all started with being jerked awake by some kind of sixth sense. I figured it out quickly: something was wrong with my four-month old daughter. I remember screaming at my husband, “Something's wrong!”

He took one look at her and told me, “Call 911.”

A Long Journey

This began as a story of intense caregiving and is now a story of intense grief.

That early morning was my daughter, Ruby’s, first tonic-clonic seizure. Some people might know them better as the old terminology of “grand mal," but the definitions of seizure types have evolved. That was the beginning of a long journey, and it is odd to me what I remember and what I don’t. I remember calling 911. Initially, all I could say was, “My baby! My baby!” The 911 operator was patient and recited my address, asking me to confirm it. When I said, “Yes,” he said the ambulance was on its way. I promptly hung up on him and had to call back. Again all I could say was, “My baby! My baby!” He recognized me, asked how old my baby was, and I told him. He politely thanked me for the information, but I could hear the shock in his voice.

I remember a few other things, like the second EMT coming into the house yelling, “I got the baby bag!” Who knew there was a whole set of equipment for infants that only certain EMTs had? I remember telling the EMT they needed to take her to the local children’s hospital, and the EMT looking me square in the eye and telling me the other hospital was closer. Left unspoken between us was the knowledge that Ruby might not survive the extra fifteen minutes to the other hospital, as he looked at me with tears in his own eyes.

Over the next few years, I learned to be able to call 911 calmly and efficiently. I learned how to give emergency medications and use medical equipment. I learned how to advocate for my child in the doctor’s office, the specialist’s office, in the hospital, in the ICU, and in schools. I learned how not to see other peoples’ eyes fill with tears, because I couldn’t afford to let my own fill. I learned how to be exhausted and function. I learned how to balance care for myself and my children. I became the parent of a medically fragile child.

Facing a Nightmare

Seizure after seizure, year after year, Ruby’s health declined. The damage to her brain made it harder for her to learn and, over time, impacted her ability to run and walk and just be a kid.  She was undiagnosed for years, with medication after medication tried and discarded. Genetic testing was finally introduced as the last step because (at the time) it was so expensive and so rarely produced any results.

Except it did produce results. Ruby had Dravet Syndrome: a rare mutation in her SCN1A gene that impacted her sodium channels and caused seizures. There was no cure and no effective treatment. There were signs that medical marijuana was helping kids with Dravet, but it wasn’t legal anywhere yet. And the worst part? One in five kids with the diagnosis died every year. Scouring the internet brought stories of only a few with Dravet who lived to be older than eighteen, out of about 9,000 children worldwide with the disease. My family was facing a nightmare.  

Years earlier, before Ruby was born, I'd had a nervous breakdown. I don’t even remember what the professionals called it back then—severe depression, I think. Somewhere in my medical files, “recurrent episodic depression” crops up as well. It was those years of depression, starting with that nervous breakdown, that sent me to therapy and gave me skills to keep myself healthy. I learned to reach out, ask for help, articulate my needs, make moments for self-care, and rely on my faith.

After Ruby’s diagnosis, I didn’t have time for depression. I reached out and realized that, unbeknownst to me, I had been building a huge support network—other moms, church members, co-workers, and other people I called friends. People who did their very best to assist me even when they didn’t understand what life with a medically fragile child was like. I also sought new communities, parents of other Dravet children, who really got it. Parents who understood the heartache in watching your child have seizure after seizure. Parents who made impossible choices between medications that stopped your child from seizing but stole the spark from your child’s eyes and made them dull. Parents who made choices between quality of life and potential quantity of life.

So when Ruby died Christmas Eve of 2014, I was surrounded by love.

Figuring It Out

There are so many things I could tell you about that time.

The most overwhelming memory is, of course, the pain. Did you know that mothers cry out after their children die? Not always the moment after—sometimes a day, maybe two later. For me, it was that night: the cry was guttural and the sobs wrenching, and I couldn’t stop. A few weeks later, I read about another mother, whose same type of cry had been heard through hospital walls. I confirmed it with a few other mothers who had known loss. It is like your body takes over. I hope to never feel that way again.

The next most overwhelming memory is of gratitude. So many hands, so much love, so much support. From family members who sorted through pictures, to those who brought food to the funeral home. From friends who helped me clean out my daughter’s room, to friends who just checked in on me daily. From coworkers who picked up my workload, to those who took to me out to lunch to keep me sane. From my mother, who not only grieved the loss of her namesake, but was torn in two by the path her daughter was experiencing. They have all given so much and asked for nothing. I will be trying to "pay it forward" until the end of my days.

The pain hasn’t stopped, but it has lessened. The gratitude and grace make every day brighter. I live for myself. I live to raise my son into a man. I live to honor my daughter. I have not fallen into depression again, but sometimes my house doesn’t get clean. And there are a few things (okay, more than a few) that I have trouble sorting through and throwing away. The mismatched socks in the basket on the washing machine have sat there since December 2014. But those socks don’t stop me from enjoying the life I have now.

I wish I had a valuable life lesson to share. All I can say is, you figure it out when you get there. And gratitude always makes a difference. Thank you.

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