Both/And: What 57 Days Taught Me About Grief, Love, and Living

Today, we’re honored to share the story of mother, Amy Phillips, whose baby’s life was touched by cancer. Her words offer a glimpse into the heartbreak of loss, the enduring power of love, and what it means to carry your baby’s story forward.

September is Childhood Cancer Awareness Month. Over the years I've watched other mothers share their stories during this month, and I've always thought, “maybe someday I'll do that too”. It will be 14 years this coming January since I lost my daughter Annabelle, and this is me finally doing it. A story written by Amy Phillips.

Before Cancer

When I first knew something was "wrong" with Annabelle, cancer never crossed my mind. Not remotely. I knew she was sick. I knew something wasn't right. But cancer? That's not something you think of for a beautiful, healthy infant.

Annabelle was born seemingly perfectly healthy, 8 pounds, 2 ounces. She nursed like a champ and slept great for her first three weeks. Then I noticed her head seemed to be growing at a rapid pace. It took a few days of convincing everyone around me, and myself, that I wasn't just a needlessly worried new mom before I called our doctor. We were sent immediately to Peoria Children's Hospital. Our doctor already suspected hydrocephalus, but we needed to know what was causing it.

Even knowing it was serious, cancer still wasn't on the table in my mind. Who thinks that their child, born completely healthy, will be admitted to the PICU at four weeks old and gone three weeks after that?

In the seven weeks that followed, Annabelle went through a CT scan, an MRI, more pokes and prods than anyone should endure in a lifetime, and brain surgery. She only lived 57 days. And in those 57 days, she went through all of that, and more.

Fifty-Seven Days

I wrote the list below not long after Annabelle passed away, while it was all still raw. I've kept it as it was then:

Yet in those 57 days, I learned more than I ever had before in my life, and probably more than I ever will:

- I learned to love hard.

- I learned it's okay to open up and let people see you struggle and cry (although I'm still not good at that).

- I learned most people in this world are good, and will do almost anything, big or small, to help you.

- I learned I'm a lot tougher than I ever thought I was.

- I learned my husband and I truly have the kind of relationship that can withstand any storm.

- I learned a 9-pound baby girl can be the strongest person you will ever meet in your life.

- I learned someone can physically be in your life for only 57 days and still stay with you forever.

- I learned that I would never have a "why me" attitude. The real answer is why not me. No one is special. Cancer can take any person at any moment.

I could go on and on with everything I learned, good and bad. But I also learned, sadly, that cancer, that horrible, disgusting disease, can take a beautiful baby. Your child. Your heart. I learned what it's like to watch your child take their last breath. I learned what it's like to make the phone call to family and friends, the one they were dreading. I learned what it's like to plan a funeral at 31 years old.

The Miracle

While Annabelle was on hospice care at home, I posted this on Facebook. I want to share it here exactly as I wrote it then, because it captures something I couldn't recreate now:

People keep saying "miracles do happen" but what they can't see is that the MIRACLE already has happened. I was able to enjoy 9 months of Annabelle all to myself first. Then she was born into a loving family who adored, and still adores, her. And three, which is the hardest for some to see as a miracle, when she got sick we were sent to the best place possible for her. Even though they did not give us the news we wanted, they found the answers we NEEDED. And the most AMAZING miracle is she got to come home with us. Right now, as I write this, she, her sissy, and daddy are all snoozing away comfortably in my room. So you see, even though our hearts are breaking, we have seen MIRACLES. And we are at peace.

Love, Amy & D

Grief is a journey no one can tell you how to prepare for or maneuver. There's no way to "win" at grief, though I've spent almost fourteen years trying to beat it anyway, and failing.

When Annabelle passed and it was time for her funeral, people kept saying how well my husband and I seemed to be doing. We were far from okay, but we had already been mourning and carrying grief for Annabelle for about a month by then. The night she passed, a friend who was in the room with us noted that he could physically see the weight lift off our shoulders. He was right. It felt like a weight of anticipation, worry, and stress lifting, if only for a moment, replaced immediately by a different kind of weight. But it lifted, all the same.

Almost Fourteen Years of Grief

How I grieve has shifted and changed over these almost fourteen years, and so has what it looks and feels like.

In the year after Annabelle died, it was anticipatory grief. What would it feel like when she'd been gone a week? A month? A year? How was I supposed to act? If I didn't seem sad enough, would people judge me? Would this grief just keep growing into a heavier and heavier burden?

I'm someone who has a very hard time showing my vulnerable side. I try to hide the grief and the tears, and I mourn quietly, in my own way, though I want to be clear that's my own struggle, not a model for how anyone else should do it. It is okay to cry in front of people, to fall apart, to let others see you struggle. What I've come to believe, strongly enough now to hold onto it, is that your grief belongs to you. You owe no one any part of it, or any particular way of carrying it. In my case, that's true for everyone except my husband and our children. Outside of him, no one knows exactly how this feels, and no one gets to prescribe how I should act, what I should do, or how I show my feelings.

This is something I've shared with other mothers who've experienced loss, and it feels like a small way I can help, offering them permission to grieve without a layer of judgment on top of it.

Grief can also carry overwhelming guilt, guilt that, logically, I know isn't fair, but that weighs on my heart anyway. Fifteen months after Annabelle was born, our son Dexlan joined our family, adding to the joy our daughter Addilyne had already brought us. I recently admitted to someone I trust that when grief for Annabelle comes, it comes with guilt attached. Guilt, because if I hadn't lost Annabelle, I wouldn't have Dexlan. And guilt, because I believe I would go through this entire journey again to end up with the exact life I have today.

Both, And

I am a blessed woman with a loving husband and children who make me proud to be their mother every single day, children I'm told, again and again, are kind. And while I would give up almost anything to hold Annabelle one more time, I would not give up the life I have today. That's a hard thing to hold in a mother's heart at the same time.

Though I struggle with it, I share this so other mothers know: it's a both/and, not an either/or. I miss and love Annabelle so much, and I am blessed and happy with how my life turned out. My trials have been hard, but they've shaped who I am today, and I am so grateful for that.

If there's one thing I hope another grieving mother takes from this, it's that you don't have to choose. You can hold devastating loss and deep gratitude in the same hands, at the same time, for the rest of your life. That isn't a contradiction. That's just what carrying love for someone who's gone actually looks like.

If you are early in this, if it has only been days or weeks or months and it feels unbearable right now, I am not going to tell you it gets easier, because that's not really true and it's not really the point. What I can tell you is that you will not always feel exactly the way you feel today, and you do not owe anyone a certain version of your grief while you find out what it becomes. Go at your own pace. You are allowed to.