I Learned What It Means to Be a Mother When I Had a Fatally Ill Child

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May 9 2013 7:15 AM

Mothering Cal

What I learned from parenting a terminally ill child.

Photo of the family from their Make-A-Wish vacation to Martha's Vineyard.
The author and her family during their Make-a-Wish vacation to Martha's Vineyard

Photo courtesy of Randi Baird

I have three beautiful children, the oldest two, who are 9 and 13 years old, excel at school and run track and play baseball and have friends. Their teachers tell my husband and me these children are kind and empathetic and smart and filled with promise. And yet, even though I have been a mother for more than a decade and I have written an influential book about motherhood and have been called a nationally recognized expert on families in the United States, I didn't know anything about love and sacrifice and children and mothering until last year when the doctors at the finest children's hospital on the planet told me that my youngest child, who was 2 years old at the time, was dying.

Calliope Joy, or Cal, as she is known to us, has metachromatic leukodystrophy, a rare, genetic disorder that damages the wiring of the brain called myelin. MLD is a white matter disease, in the same family as MS, but because my daughter’s body cannot produce this single enzyme, her brain's white matter is being destroyed and her brain cannot communicate with her nervous system at all. The doctors tell me her brain will just turn off one day like a light bulb burning out.

Cal is not expected to live beyond the age of 5 and before she dies she will become paralyzed, blind, and nonresponsive. Every milestone she had achieved, walking, talking, feeding herself, using the potty, was reversed within three months of the diagnosis. In June of 2012, Cal started to lose her balance, by September, she could no longer walk, speak, feed herself, or sit up on her own. A year later, at 3 1/2 years old, Cal struggles to hold up her head and receives hospice nursing care at home.   

In the months since my daughter's diagnosis, I have spent a great deal of time thinking and writing about what can be learned from all of this, to make meaning out of our grief and loss. There are no medical miracles or happy endings waiting for Cal, but, in the wake of this pain, all I can do is try to learn and teach and harvest this pain for wisdom.

And so, for this Mother's Day, I feel compelled to share with all of you who get to parent children who are healthy and strong and growing up what mothering a child who will never grow up has shown me.

1. Cherish the fact that you can tell your children that you can make things better and that they believe you. The ability to say this is an astounding statement, as I learned when I had a child to whom I could not really honestly say it.

2. Ask yourself what the families in Sandy Hook would do if they were given one more week, or even one more day, or just a single hour, with their children. I am not saying you should buy them the Xbox they have nagged you for or take them to Disney World. But, what would those parents say and do and hold onto if they had known they would never see their children the following day. As someone who is moving in slow motion to experiencing the kind of grief the Sandy Hook parents took on, I cannot tell you the joy I take in reading books to my daughter and going swimming in the pool and snuggling with her to watch her favorite video or sing a song. The tasks that were once squeezed out of daily routines become the moments of pure and most magical joy. Force yourself to imagine, if only for a moment, how you would feel if you lost them. This is a powerful exercise for fighting the complacency that corrodes family ties and the societal obsession with achievement that makes a child's success in the future the only thing parents concern themselves with.

3. Please stop playing with your smart phones and your iPads when you take your children out for ice cream or to the park or for their swimming lesson. Let me assure you that it is a miracle, a profound gift, to see a chubby toddler figure out how to swing or watch a 5-year-old blow bubbles in the swimming pool. Stop being so impatient for your children to get to school and get to the next level. Now that I have a daughter who will never go to school or earn an A or attend her prom or head off to college and live on her own, I can see that the things that seemed like milestones to be achieved were amazing gifts for me to watch. How eager I was to take credit for my children's ability to throw a baseball or excel in math or read with ease, but I deserve no more credit for these things than I have earned blame for passing on the genetic mutation that is killing my youngest child.

4. When you see your friends with sick or special needs children, stop thinking they don't want to discuss their children or that the kind thing is to act as if you don't see what is going on. Here is what you say to parents like me: “I think of you so often.” Please don't say, “You are my hero and I don't know how you do what you do.” We are not heroes, we are obligated to do this and if you found yourself in the same circumstances you would be no different than us. As for the children, hug them and talk to them as if they are no different than other children. They crave your attention and interest just like anyone else. Children who cannot hold up their heads or have lost their hair from chemotherapy or whose bodies are swollen from steroid treatments or who must use a tube to eat are beautiful too. Say she has lovely curls and amazing brown eyes and a nice smile. This gives any parent, but especially mothers like me, great pleasure. And if you want to say anything nice to me, please tell me: "You are a really good mom."

5. Find out if there is a program they would like you to support or ask if you can come and visit with your own child. Contact your local children's hospital and school and donate crayons and toys or, better yet, ask what such programs need. Have a bake sale and ask your PTA to support chronically underfunded programs serving families with seriously ill and special needs children. Yes, it's great to give money to research and find a cure, but so many families lack the resources to get the costly equipment to care for their seriously ill child and so local families will, without question, need your financial help to get a wheelchair or a specially modified vehicle. If you are comfortable, ask parents in situations like mine if they need financial help taking care of their child. Many insurers don't cover more than the most basic wheelchairs and there are precious few funds available to remodel homes. If you don't want to ask, suggest someone close to the family who can inquire. We love your homemade lasagna and delicious chocolate cookies, but there are other kinds of help that can be game-changing.

6. Please don't feel sorry for parents like me. Love us, support us, talk to us and even talk about us, but don't feel sorry for us. My daughter is perfect, she will never hurt anyone; she only seeks loves and creates it. I mourn for a world that doesn't see her perfection. It is not true that a parent should not have to go through what I am going through. Complacency and comfort are just illusions from the messy, chaotic pain of real life. We need suffering to experience joy, we require loss to know love. Would we worry and protect and care for our children if nothing bad could happen to them? Understand that my daughter's impending death is tragic and I am filled with fury and rage over it, but, please don't suggest that her death, and even her suffering, doesn't make her life any less valid. Let me assure you, she will accomplish more her in her short life than many who squander their time on this planet.

So, this Mother's Day, please try to see your children the way I do: beautiful, healthy, and filled with promise. Remind yourselves of the mothers who will never get to do so many things you hardly notice, like take a walk, get a kiss, give their child a bear hug, sing a song, or play with a toy.

Be mindful of how fragile this all is, and don't let the fear of uncertainty immobilize you. Let it lead you to love your children with clarity and joy and profound gratitude.

Maria Kefalas is a professor at Saint Joseph's University-Philadelphia, author, blogger,  and co-founder of the Calliope Joy Foundation to support children and families with pediatric neurologic disease.