by Trish Adkins, ALSF staff writer and Hero Mom
Mothers of childhood cancer heroes learn how to do all sorts of things they never thought they would have to do: flush ports, sleep in chairs at the hospital, search for clinical trials, manage pain, entertain children in clinic waiting rooms and put on a brave face when their child is diagnosed.
When my daughter was diagnosed with a brain tumor at 14 months old, I was just figuring out how to be mother. Immediately, everything changed. I learned that nothing was guaranteed, except that my love for my daughter (and later, her siblings), would grow exponentially no matter what cancer threw in our path.
One of the amazing perks of working for ALSF is the time I can spend with other hero moms. They each have their own wisdom gleaned from the frontlines of motherhood and childhood cancer. I asked each of these women how childhood cancer changed their idea of motherhood and what they learned. Here are their lessons:
1. How to Survive Change and Challenge
“Childhood cancer changed motherhood for me because it changed my entire perspective. His diagnosis is a constant reminder that we've endured one of life's greatest challenges. When something comes along that we may find challenging, I take a breath and remember what is truly important - our family.”
-Lisa, mom to childhood cancer hero Michael and SuperSibs Ryan and J.J.
2. The Chance to Experience Childhood, Again
“Survivorship has made me value motherhood so deeply! It’s been interesting to experience childhood through my daughters, because I didn’t really have one. My childhood was spent in and out of hospitals, and I had to grow up really fast. So I’m learning as I go, and that’s a gift! My girls have given me a chance to do some of the things I missed out on like hosting sleepovers, going on vacations, having friends over and playing outside with the neighborhood kids.”
-Brenna, childhood cancer hero and mom to Madelyn and Lydia
3. Never Wait, Just Do It
“Childhood cancer changed motherhood by demanding a superhero level of care and vigilance for my son. I never look at a fever, fatigue or any kind of illness the same way again. Even though he is a survivor, he is at risk for developing other cancers as he ages. I find myself always checking on him more than my daughters.
As for lessons... always go for the second and third opinion as needed. Trust your instinct above any medical degree. Surround your child and family with love and positivity. Plan the vacation... don’t wait, just do it. It’s a credo we still live by 11 years later.”
-Keren, mom to childhood cancer hero Cole and SuperSibs Maggie and Maeve
4. Loving Hard is the Only Option
“Being a mom of a childhood cancer warrior taught me to love deeper, have great empathy for all people who are faced with illness and loss and always rejoice in the present. Time is a great gift. Our children, family and friends are blessings no one should ever take for granted. You get to keep the love you shared even when your child is called home.
I focus every day to be present and strive to be the Mom all my children deserve. I am lucky to have been chosen to be a Mom! “
-Jody, mom to childhood cancer hero Danny and SuperSibs Jackie, Stephanie, Cassey and Matt
5. What It Means to be Strong
“Strong is the love we have for each other. Strong is the bond between a parent and child. Strong is the faith my child has in my willingness to be honest with him, to protect him to the best of my ability and ensure he receives the best medical care available. Strong is my son who is fighting this battle with courage.”
6. The Strength of Mom Friends
“Childhood cancer made me question myself and what I didn’t notice or overlooked until I met wonderful moms who put my mind at ease and helped me to understand how to go forward. It also made me appreciate my kids' resilience and strength.”
-Lilli, mom to childhood cancer hero Morgan and SuperSibs Michael, Miles, and Mckenzie
7. It's Okay to Miss What Was
“Childhood cancer put an urgency into my motherhood and that changed me. I miss my 'before childhood cancer' motherhood every single day.”
-Megan, mom to childhood cancer hero Declan and SuperSibs Brendan and Thomas
8. That You are Doing Your Best
"It’s the daily lessons of knowing you're doing the best for your kids even while your second guessing yourself the whole time. I never thought I could love as much as I love them.”
-Beth, mom to Childhood Cancer Hero Cameron and SuperSibs Skye and Emma
9. To Rethink Old Truths
“Being given a terminal diagnosis on day one as a childhood cancer mom really made me rethink every truth I held prior to that day. I went from my daughter is only 12 to 'oh my God, she will never be 13.' I thought, 'What experiences should I help her to live in these next 7-9 months?' All the things that I believed to be paramount suddenly weren’t so important after all. School for example, was her attendance that important after all? I mean did it matter that I had put so much importance on the kids being at school no matter what. Was I missing the boat or had I already missed it? Books or movies I thought were too mature based on a multitude of factors; did it really matter?”
-Deb, mom to childhood cancer hero Hope and SuperSib J.D.
10. Gratitude for Each Day
“I was a fairly 'new' mom when cancer invaded. In minutes, my life changed from the perfect family—my son with beautiful blond curls so excited about kindergarten and my daughter who emulated everything her big brother did—to asking our ER nurse to pray for my son because I couldn’t think of anything else to do and couldn’t remember how. The world of motherhood became a world of bravery, hope, love and faith… Normal no longer existed.
From that day—July 16, 1991—forward, I cherish every single moment on earth that we have as a family. I am grateful for sunrises and the sunsets that bring the promise of a new day and the chance to offer hope to others.”
-Anita, mom to childhood cancer hero Mike and SuperSib Morgan
11. It is All Short and Precious
“What did I learn? Don't take anything or anyone for granted. Life is short and precious. Children are strong-willed and resilient and have an amazing ability to adapt to whatever life throws at them. Live in the moment, be flexible, and make the best of things. Gather information and look at all options. Don't be afraid to ask questions. Try to be easy on yourself and your family members, everyone is just doing the best they can under the circumstances. Take time out to just have fun and enjoy life whenever possible. There is no why.”
-Aimee, mom to hero Kendall and SuperSib Zachary