written by Martha Sharkey, Founder TODAY Is A Good Day
Every single morning, she is there. She’s with me when I wake up. Thoughts of her come to me at different times throughout the day.
She was with us for 2 weeks…our “stronger” twin, twin B who weighed 1lb. 4oz. compared to her sister who weighed only 1lb. 2oz. when they were born at just 23 weeks & 5 days. She opened her eyes first. She had the better start in life…and then she passed away in our arms at 2:15pm on Sunday, November 28, 2010, the weekend after Thanksgiving. We knew her time with us was limited. She had been very sick for the past few days.
As a parent who has lost a child, the hole in my heart never seems to heal. I can feel the small hole that was left the day our Mary Gladys passed away. We believe she earned her angel wings that day. And, while we believe she is watching over us, days still present difficult moments even seven years into this journey.
Through our lives we meet others who have traveled not only the NICU journey but also the journey of losing a child. The difficult moments, the “what ifs,” and the thoughts will always be there. The hole is always present.
The thoughts of what life would be like can hit me at the craziest times like the dinner table. Last night, I watched Claire give kisses to her baby sister, Martha Rose, during dinner. My mind imagined what life would be like with Mary standing beside Claire. I could almost see her standing there with her sisters. We know what she would look like as they were identical twins, but what would her personality be like? Would she be as outgoing and personable as Claire? Would she be a nurturer with her baby sister?
The pain also strikes like a bolt of lightning when someone asks, “How many kids do you have?” It’s a simple question and one asked by so many daily. Living through our journey, however, I know the question is not always a simple one to answer.
When Claire came home and life moved on, people would ask us about our family and how many kids we had as most people do during conversation at work events, social gatherings, etc... When we first started our life with Claire at home, I would freely and openly go into our story with the person who was just trying to make small talk. I would share that we had identical twins and our stronger twin passed. I would overwhelm them with our journey as a way to help myself grieve and keep Mary’s short but important life relevant. Often, people would not know what to say except “I’m sorry.” As time moved on, my answer started to change. I would tell the stranger making small talk with us at the grocery store, in line for ice cream, or an event that we have a daughter. I may add that she was born extremely premature, but she was doing great. If the person asked more questions or shared a similar story, I would then share more details about our journey. While I felt as though I was saving the person from shouldering undue burdens by hearing our journey, I always felt as though I was not giving Mary the recognition she deserved as our 2nd born child. The answer to this seemingly simple yet loaded question has changed over the years.
Today I’ve found my answer…“We have two girls at home and one keeping watch from above.”
With each of the answers above, I most often hear “I’m sorry” in return, which is completely understandable. “I’m sorry” is an answer that makes sense when you talk about a loss. It is almost expected, an obvious answer. However, for those unsure of what to say to me when I share our journey, you don’t have to say “I’m sorry.” I am so grateful when you ask me questions about our sweet Mary, when you ask me how we celebrate her short but impactful life. Or when you simply say “Thank you for sharing her with me.” I love to have the opportunity to share her name and her story.
I will tell you that we talk about her to our girls on a regular basis. I may share with you a sweet memory of a visit the cemetery to place pink roses at her gravestone on her birthday or my dear friend’s family tradition of placing a grave blanket on her gravestone at Christmas. I will talk with you about our family’s nonprofit we founded to help other families with premature babies in her memory and in her sister’s honor. She may not be here with me, but the memories of holding her, reading to her, praying for her, and celebrating her life are always fresh in my heart and mind. For you to ask me about her means so much to me.
For those of us who have had to say goodbye to our children, to the memories never made, to the “what ifs”, and the difficult moments in each day, know that you are not alone. To my friends who have lost their children, thank you for sharing their photos on Facebook, for sharing your child’s life and your memories with me. Thank you for talking about your sweet child. I am grateful to be a part of your journey.
What is most important to our family is having the opportunity and the space to share Mary’s journey and talk about her. The hole never gets smaller, but we continue to get stronger.
I use the phrase “Take Today” regularly. The phrase is a reminder for me that I only have TODAY. I need to look at the day with optimism and possibility. I will Take TODAY to remember Mary, to celebrate Claire, to love Martha Rose, to be thankful for my sweet husband, and to be grateful for ALL things along this journey we’ve been given.