Being a mother is the hardest job in the world. Being a mom to my two amazing boys at home, while missing my son who died, is even more challenging. As Mother’s Day approaches, I’m reminded again of his loss but also of the beautiful ways in which he continues to inspire me.
Some days what I miss is not only Zack, but the connections I had in my life when he was alive. Like the team of therapists who walked through our doors each week to support his development, or the nurses at the hospital who knew him by name and how to make him smile when he was sick. I also miss the doctors who were challenged to support his complex medical needs but always listened to me as the expert. Mostly, I miss my tribe of mothers. Mothers of children with special needs who could relate to each difficult day and sleepless night.
At SickKids, I was regularly part of the “Red Badge Wearer Club”—parents of children who were staying at the hospital. This group of moms were subtle and quiet on most days, but could be vocal and powerful when advocating for their children. Often we would communicate with each other in a no-words-necessary way as I walked the halls with Zack and his IV pole, met them in the family rooms on the units or during a quick break to line up for coffee in the Atrium.
Within the walls of SickKids, there were the strong moms who I’ll never forget. The ones with whom I shared meaningful moments, during difficult times at the hospital. I met new mom Michelle and her son Ben when we shared our first “step down” room after Zack was recovering from open heart surgery at only 2 weeks old. She had been there since the beginning of Ben’s life eight months ago. She was there without her husband, as he had to stay home to work while she was in the city caring for Ben’s critical cardiac needs. She inspired me instantly, with her strength to care for Ben in such a positive way each day. Her kindness was also evident when she brought me a tea or we shared a laugh during our days and nights alone in the room. Even her ability to decorate his crib with mobiles, stuffed animals, decorations, made me so jealous that I had to bring accessories from home so that my Zack could keep up with her Ben.
There was the new couple in the Cardiac Critical Care Unit (CCCU) when Zack was first born. Having been a mom for 4 years already with our first born, I could see the fear and confusion in this mother’s face. Her first week of motherhood was not at all as she had planned and she hadn’t been able to hold her little miracle yet. One day, we were in the CCCU room together and the nurses saw that this mother was fading, tired and defeated. I heard them ask her if she would like to try to hold her little son for the first time and the look on her face changed in an instant. It took a team of skilled nurses over 15 minutes to carefully readjust wires, tubes and machines, position the rocking chair and place the baby into the arms of his loving mother. We looked on with tears, as we still hadn’t held Zack, but I was so incredibly happy for her to have this moment. She had forgotten her camera, so we took the photo for her and emailed it to her husband. Her strength was renewed and as she placed her baby back in the crib, she was given a new energy to keep going.
Strong moms are out in fierce numbers at the ICU in SickKids. Their children are fighting for their lives with each passing breath and still they rally each day and pass your door with a forced smile, nod or even a hug. Often, no words are needed with this incredible group of mothers, to which I belonged. We “slept” on couches in the second floor parent waiting room with make-shift beds protected by tables of our personal belongings or coffee and snacks. Each family segregating themselves for most of the day, but every so often, we would bring a drink, share a story or ask how our children were doing today, fearing the answer but not wanting to appear uncaring. When Zack had one of his most difficult days, one mom came to me and gave me a good luck bracelet to wear. She said that it came with a prayer, as her son was also battling an illness right next door. She knew exactly what I needed to find the strength to get through that difficult day.
There isn’t a day that goes by that I don’t think of Zack, the impact he had on our family and the ways in which he created the mother and woman that I am today. Shortly after he died, Zack inspired the new career path I now find myself in. In my daily work, my hours are spent supporting moms of children with disabilities. This incredibly rewarding role has helped me to identify my own strengths, value the strength of these other moms and stay connected to my “tribe”.
This Mother’s Day, it won’t be flowers, candy, or a trip to the spa that I ask for. This year, I’m asking my family to choose something from the Get Better Gifts site that gives a SickKids mom just a moment of “normal” to smile and enjoy time with their child. Maybe the gift of a glider chair so that another mom can feel that joy of holding her baby in the NICU. Maybe it’s arts and crafts to take a few moments from talking about medical terms and test results, maybe it’s a gift to support the mom saying goodbye to her child by providing molds of her precious child’s hands. There are so many options that give strong moms just a moment of joy and a break from the reality that their child is ill.
Happy Mother’s Day, to all the strong moms.
This was created in partnership with SickKids, but all the opinions are our own.
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