Guest Post :: Loving October, Living my Purpose

Zoe, 2nd day of life.

My girls at 8 months – Zoe was still in the NICU.   My sister is a photographer and set up a mini-photo studio in her hospital room.

October holds fond memories for me when significant experiences have occurred. In 1998 my husband and I married on one of those perfect cool Autumn days in North Carolina. If I could have hand picked the weather for that day, I would have picked exactly what we got. Fast-forward nine years to October 7, 2007, when I finally got that wheelchair ride out of the hospital with the last of my triplet daughters, Zoe Rose. My girls were born 15 weeks early, and while Zoe’s sisters, Avery and Lily, spent 120 days in the NICU, Zoe was a much different baby with a far more complicated NICU course that lasted 291 days.

October 7, 2007 – NICU Discharge Day – My wheelchair ride! Saying goodbye to her primary nurse, Susan.

Much like my wedding day, October 7th was another perfectly cool and sunny day. I remember how Zoe’s eyes squinted when we first went outside. It was, after all, her first time outside in the sunshine in the 9 ½ months she had been alive. The only other outdoor experience she had was a stretcher ride from the hospital to the transport ambulance that took her across the street to the Children’s Hospital in the middle of the night for a procedure. I’ll never forget that sunny day though…strapping her into her car seat and watching her calmly take everything in around her. My cheeks ached that night from smiling so much.

Our family at home!  One of just 2 family photos we have.

Finally! I would have all three of my daughters under one roof, and it wasn’t the hospital’s roof! It marked the beginning of the season in my life I refer to as “controlled chaos.” Controlled because our weeks were scheduled out several days in advance full of in-home therapy appointments, follow-up appointments, and strict feeding schedules. Chaotic because we had three special needs infants at home each with their own medications, milestone goals, and specialists to see. I loved it.

Unfortunately, just a few months later on February 16, 2008, Zoe died very suddenly from a secondary infection contracted during a brief hospitalization with flu and pneumonia. My controlled chaos turned into a messy, unfocused, painful existence; an existence where I found myself at the bottom of a pit of grief, feeling completely alone, and desperate. I didn’t know which way was up or down, left or right. Most days I had to will myself out of bed, verbally give myself commands so I would know what to do next “wash my face, brush my teeth, change the diapers, etc.” I would collapse during nap time and I forgot to eat.

I began to search for someone like me, someone who knew what this felt like, someone who could tell me if I was just a grieving mother or if my brain chemistry was being permanently altered. I had my triplets and more group and I had my micropreemie group, what I needed now was a loss in multiple birth group whose members also knew what it was like to survive the NICU experience. I did find a couple of groups like this, but I often found myself feeling guilty as a majority of the moms had lost a twin – I complained about someone calling my survivors twins, while they rarely got a chance to reveal that they in fact had twins. Many of these moms grieved what they never got to know because their babies died in utero or shortly after birth – my daughter was 14 months old, she was an older infant. I got to know Zoe. I got to know her well and to see her smile and hear her laugh. I got to rock Zoe in my arms, bathe her, and sing in her ear at bedtime. I felt guilty because I had what these moms never had a chance to experience. But I was hurting too, I wanted more than 14 months with my little girl.

Zoe, just 2 weeks before she died.

I found myself in a major depression, and cut off contact from many of those that knew me and loved me. I felt like they couldn’t relate to me, not having lost a baby themselves; and in order to protect myself from something insensitive they may innocently say in an attempt to comfort me, I preferred to not chance those situations. So I searched. I searched and Googled and searched some more. Read books about grief and probably a thousand blogs of grieving mothers. I met moms with several babies gone too soon over the course of several pregnancies. Other moms spent years trying to have a baby only to give birth to a premature infant with a chromosomal abnormality that was incompatible with life. I met moms whose full term babies were born still or whose four month old died of SIDS and one mom I met had a little boy, Baby Bobby, who was born with JMML, a rare form of leukemia and would only live for five months. The stories and the circumstances vary widely, yet the grief remains the same. The grief of a parent having to say goodbye to their child is incomprehensible unless you live it yourself. The searing pain mars our hearts and our souls forever and life is never the same. It truly does not matter how many breaths are or are not taken outside of the womb. Each of these babies was desperately desired and will be deeply loved and missed forever.

I immersed myself in the world of pregnancy and infant loss and learned that October was Pregnancy and Infant Loss Awareness month. October had always meant Halloween and Breast Cancer Awareness to me in the past, now I had an awareness month I was intimately and forever tied to. I decided to participate in the International Wave of Light and light candles for Zoe and for the other two babies who I never got to meet. As I continued to correspond with these other loss moms I couldn’t just honor Zoe, I felt the need to show love to these hurting moms. I had to make sure they knew that I understood their grief and I shared the craving to know that someone thought of their angel and spoke that precious baby’s name. This simple act began to grow – first 2 or 3 names were added to my list, then 7, 10, 25…by the time October 15th came, we had 150 candles for 150 babies in Heaven. Last year, during our 4th Annual Rainbow of Roses Remembrance we lit 450 candles, each for a baby whose parents never got to hear their first word or watch them start preschool.

While our event has been held in Georgia for the past four years, I recently had to make the very difficult decision to move the remembrance to Mississippi, where we now live. It has always been important to me that our surviving daughters are able to participate in the candle lighting. I feel it gives them a positive way to remember their sister who they know once lived and played with them, but who they don’t have any real memories of. Avery and Lily look forward to this special evening and we are happy to be able to spend this October 20th from 6-7:30pm with a few families in our local community we have come to know and support. They also have surviving siblings and have never had an opportunity like this for their children to take part in a remembrance. I hated to leave the dear families in Georgia, but I have to think of my family first – my family still needs to heal and we need to be able to spend this night together.

I do still love October, and this particular month now offers even more than the chilly breeze I enjoy so much. Now, I have a chance to live out my favorite quote by Mother Teresa: “We can do no great things, only small things with great love.” So please remember that grand gestures are not needed when someone you know has had a miscarriage or lost an infant. There is no greater gift you can give than remembering their baby.

As another woman I admire, Elizabeth Edwards, once said: “If you know someone who has lost a child…and you’re afraid to mention them because you think you might make them sad by reminding them that they died, they didn’t forget they died. You’re not reminding them. What you’re reminding them of is that you remember that they lived.” Every life is precious, every baby a gift, no matter how many breaths they did or did not take outside of the womb.

For a beautiful line of cards and other gifts to send to parents who experience a pregnancy or infant loss please visit Small Bird Studios. In all the searching I’ve done for the perfect remembrance gifts, Francesca Cox, bereaved mom of Jenna, is wildly talented and pours the love she has for her children into each piece she creates.