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“For the first time in nine years, I finally feel hopeful.”

By Katie Reilly

Today my daughter, Fianna, turns one—an incredible milestone in her life. I never realized what an unforgettable one it would be in mine.

Growing up, my parents created a very loving and sheltered (and privileged!) world for me. I had different relationships with both of them, but I loved them both dearly. I grew up feeling incredibly lucky to be raised by two inspiring and special people. I woke up most days happy and excited for whatever task was at hand, and honestly believed life was full of beauty just waiting to be discovered.

So, when my mom’s voice was slightly slurred during my final year of law school in 2009, I wasn’t worried. And when she underwent medical testing to determine the cause, I stayed positive. When my mom told me that she had ALS the weekend that I graduated, my first thought was that we will find a way to beat it. When she expressed fear that she wouldn’t make it to my wedding, the words did not sink in. To this day, my mom is the strongest, most badass woman I have ever met. 

I honestly believed that her superpowers would even find a way to beat an incurable disease.

Over the next year, I moved in with my parents. I watched as my mom’s strong muscles slowly atrophied. She gradually lost the ability to speak, eat, and breathe. Throughout the whole process, I gave myself pep talks. I set out plans. I went into battle mode. I was raised to be a positive, hard worker and there had to be a way to get through emotionally intact.

When my mom finally took her last breath in July of the following year, I felt more lost and confused than I had ever been in my life. I was in total shock. My brain was exhausted and overwhelmed by the trauma of watching the death of someone I loved. The feeling of powerlessness is indescribable. And I experienced the intensity of true anger for the first time. Why did ALS take my mom and what had happened to me?

The world made no sense, but at least I could navigate this darkness with him.

It’s not surprising that my strongest pillar through it all was my biggest supporter my whole life—my dad. We always had an incredible bond and caring for Mom together only solidified it more. The world made no sense, but at least I could navigate this darkness with him.

The following summer, I was ready to take a leap of faith, to re-train my brain to believe in the world again. I had fallen in love with my now-husband, Peter, an Irishman, and relocated from D.C. to Dublin to be with him. I felt like things were starting to move in the right direction.

Dad came to visit at Christmas, and the minute he arrived in Dublin, I knew something was wrong. When he returned to D.C., he was diagnosed with cancer. Immediately, every alarm bell went off in my body. But, again, I tried my hardest to dig deep for positivity. I flew home after two of his chemo treatments and I hid loving Post-it notes all over his room so that he would find them after treatments and not feel alone. (He showed me those notes two years later—another example of what an incredible dad he was.)

The cancer finally left and I breathed deeply. Peter convinced me to move back to D.C., a decision for which I will be forever grateful. He and I arrived in D.C. in November 2012 and we had an amazing year and a half with my dad. By the beginning of 2014, Peter, Dad, and I were a little crew, having dinner weekly and planning our amazing Miami wedding. I finally felt like life was sending signals that I could let down my guard, but I just couldn’t.

I could no longer muster the energy to stay positive.

When my dad approached his two-year anniversary of being cancer-free and headed in for testing, I felt sick. I literally dreaded the results. I no longer believed that bad things could not happen to usI was afraid they would. I cried tears of fear in a bathroom stall at work the day the results were supposed to come back. I could no longer muster the energy to stay positive.

The cancer had in fact returned. Dad’s health deteriorated rapidly, and by June 2014, he was unrecognizable. In July, I got a call at work that he was in the ER. He never left the hospital. I said goodbye to his body in the early morning of August 12, 2014—my mother’s birthday. Two days later, I identified his body (in the same morgue where I identified my mom’s) before he was cremated. Four months later, on New Year’s Eve, I walked down the aisle by myself at my wedding that we had all planned together.

In the years that followed, I tried my hardest to stay emotionally afloat. I desperately wanted to feel “normal” again and to return to the Katie that existed before her parents died. I wanted to get rid of the intense sadness and the loneliness that accompanied navigating this world without them.

I found out I was pregnant in September 2016. I didn’t know what kind of mom I would be or how it would feel. I had always heard women rave about their kids or talk about the profound change motherhood had on them, but it didn’t resonate for me. I knew that becoming a mom would evoke incredibly difficult memories of my parents and would be a glaring reminder of their absence in my life. I worried that my grief made me unfit to be a good mom, not to mention that I was terrified of giving birth in a hospital, since both of my parents had died in hospitals.

On June 4, 2017, my Irish warrior, Fianna, arrived, 10 days late and nine-plus pounds! I won’t go into the details of my labor, but there were around 12 people in the delivery room, including an entire NICU team. I was so incredibly scared that I was going to lose someone I loved again. But the minute she arrived—healthy and happy—I changed.

Parenthood is inevitably filled with tough moments, but after my experience with my parents, the difficulties of parenthood (which is insanity!) feel like privilege.

All of the hours and sleepless nights that I spent worrying about my parents dying make every second of watching Fianna grow sweeter. When I was at the end of my rope, feeding her at every hour of the early morning, I was comforted to know that every day she was getting stronger and that I get the opportunity to watch her flourish. Parenthood is inevitably filled with tough moments, but after my experience with my parents, the difficulties of parenthood (which is insanity!) feel like privilege.

Since the minute Fianna arrived, I have laughed harder, loved deeper, and slept more soundly (although a lot less). I have experienced a joy and appreciation for life that I forgot existed. After years of self-help books, therapists, anxiety, working out, overworking, self-doubt, loneliness, weight loss, sleepless nights, shame, weight gain, fights, intense anger, sadness, and a ton of tears, Fianna has created a brand-new space in my heart.

Of course, the void in my heart that exists due to my parents’ absence remains. Not a day goes by that I do not miss my parents. I am keenly aware of the experiences that I could be sharing with them, particularly on the first birthday of their granddaughter, who will never meet them. And the intense sadness and loneliness that I have experienced since their deaths continue to be a part of my life today.

But for the first time in nine years, I finally feel hopeful. And instead of trying to find my old self again, I am hopeful that this new Katie—covered in the battle scars of ALS and cancer, as well as the wounds of grief—might be able to discover the beauty in the world again. 

Grief & Loss Children Family Finding joy Finding meaning Loss of parent Mother's Day Post-traumatic growth ALS Cancer
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