It was about 9 months after the death of my 14 month-old daughter, Zoe. Zoe was a triplet born at 25 weeks 5 days and had spent over 9 months in the NICU. While everyone grieves differently, I felt for a long time that I had to feel the pain deeply and intensely in order to prove that I loved her enough. To whom I had to prove this, I do not know. I was terrified of forgetting her, afraid of what someone might think if I forgot to light her remembrance candle one day. Surely someone would judge me for not doing enough to save her. If I were to genuinely laugh or smile, that had to mean I wasn’t grieving anymore, that I had “gotten over her”. So I dug my heels in and refused to move forward. What was there to look forward to anyway, I once asked on my blog. A life without my daughter? A life with only two daughters when I was supposed to have three? How could I look forward to a future that did not include this little girl with green eyes and dark curly hair?
I cannot begin to count the number of times someone told me to “be gentle” with myself. What exactly did that mean? At the time, I suppose it meant to stop the cycle of blaming myself for her death, even if I could list for you all the seemingly “wrong” decisions I made leading up to those final hours. There was also the list of things I “should have” done or said, but did not. Anything here sound familiar to other bereaved parents?
Every month on the 15th and 16th I would relive those final 24 hours. I would replay the hospital scenes in my mind, willing myself to feel the pain that shock covered up those first few days. I wanted to drive that pain deep into my heart and make sure it stayed forever. I became obsessed with the pain. The pain was dull and aching on the inside and in some ways I sought pain on the outside. I got a large memorial tattoo on my arm. I would pull my hair out sometimes in chunks, rake my fingers across my skin and dig my nails into my thighs. I wanted to be enveloped by the pain, not just in an aching kind of way, but it needed to be tangible, as well.
On a cold and rainy November evening, I settled into Jeanine’s cozy, warm office set on staying right where I was emotionally. Sure I played the game of wanting to get better, but deep inside I really didn’t want that. I couldn’t feel Zoe physically anymore, I couldn’t hold her or care for her, so I needed the grief to hurt and I needed it to hurt immensely. My pain connected me to my daughter.
So there I sat, spilling my thoughts and sharing my daydreams of what life might be like if Zoe were still alive. I told my counselor again of all the wishes I had and berated myself again for all that I failed to do. She stopped me and said, “Keira, this rotisserie thinking is not helpful. It keeps you stuck. It’s as if you have dug in your heels and are refusing to get better. We need to help you grieve in a healthy way.”
Grieve in a healthy way. This wasn’t exactly what I was hoping to hear. She went on to remind me that I had two small girls at home about to turn 2 years old and a husband who most assuredly wanted his wife back. Jeanine was tough on me that day. She wasn’t letting me get away with much and she challenged me to think about how I was choosing to grieve. She even went so far as to tell me that I would one day forget to light the candle (never in a million years, I thought) and then she said it would be OK when I did (I didn’t believe her).
I walked away that evening and knew she was right. I knew that choosing to sit in the muck without even trying to get out of it was not what I needed to do, not for my surviving daughters, not for my marriage, not for my own health, and certainly not to honor Zoe. I hated it, but she was right.
Bit by bit I began to loosen my grip on the grief. That didn’t mean I stopped grieving. It meant I gave myself permission to be joyful. I allowed myself to enjoy Avery and Lily, without immediately imagining what life would be like in that moment with Zoe, too. When the 16th came, I let it pass by. Five and a half years later, I don’t even notice the 16th, except on her angel day, and that’s OK. The first time I forgot to light her candle, I cried my eyes out. Today, we light it on the occasions that are special to our family or when we want to feel her near, but it isn’t lit every day. For several years I continued to buy three of everything, but that has now subsided.
My pain connects me to her still in some ways and on some days I need that huge outpouring of grief, that big, loud, snotty cry. But, not every day. My pain does not define or quantify my love for Zoe. The love a parent feels for their child can never be measured, in quantity or quality. As Zoe’s mom I will love her until my last breath on Earth. The hole she left in my heart is still there, but it is not gaping anymore. It’s become filled over time with a constantly growing love for God, for all my children and my dear husband. It is filled with that love we share freely in the work we do to support and help preemie and grieving families. Not every day is easy. Life isn’t all lollipops and butterflies. Each time I hear the uncensored joy of Avery and Lily playing and how they double over with laughter almost daily, I am thankful I listened to Jeanine and chose to grieve in a healthy way. If I hadn’t made that choice, those moments of joy would be lost in the wind.
October 15th is International Pregnancy & Infant Loss Awareness Day and the Zoe Rose Memorial Foundation will commemorate this special day on October 12th with a candle lighting remembrance. To add your baby to our list and have a candle lit in their honor, please visit our website www.zoerose.org.