Parenting a Child with a Life-Altering Illness or Condition
“Like they tell you on the airplane: first, put on your own oxygen mask. Then, you’ll be able to put your child’s on them.”
Bad things happen to good people. We know this, but when something happens to a child, when they are diagnosed with a serious illness or condition, their illness also “happens” to their parents or caregivers. Caregivers often must put the rest of their lives on hold to attend to the sick child. But those of us in that role must also take care of ourselves so that we are strengthened to give that care.
Personal Story
My youngest daughter was diagnosed with cancer at 7 months old, and then had a recurrence when she was 3. I didn’t even know that babies could get cancer! Those first couple of weeks, my head was spinning as I tried to listen to doctors, get more information, and figure out how we were going to deal with this. I felt like I couldn’t breathe. I needed oxygen.
Finding Others: I found my “oxygen” in several forms. The first came when I discovered a group of people online whose children all had the same cancer as my daughter. We were able to exchange information, and swap stories. There is immense value in finding people who have had the same experience; they understand on another level what you are going through. Perhaps most importantly, they remove the feeling that you are alone in this.
Fun with Friends: Because a cancer patient has such low immunity against germs, my daughter and I were fairly housebound. My friends persuaded me to go out with them occasionally, to see a silly movie and have dinner. These dates were a lifeline to me; they replenished my spirit by being nothing more than ordinary, dumb fun. With them, I wasn’t a “cancer mom,” or even a mom. I was just me.
Self-care: The importance of physical details such as getting enough rest and healthful food shouldn’t be minimized. Accept the offers of help by asking for someone to bring you dinner. Find a way to get some rest, even if it’s in the form of a nap while someone takes your child to the hospital playroom, or plays “Candyland” with your child in your living room. Exercise, even if it’s walking around the hospital unit.
A Place to be Real: I have grimly joked that on the day my daughter was diagnosed, I was handed a halo and angel wings for myself. Our society does like to make heroes out of sick children and their parents. It’s easy to do—I know I’ve looked at a friend of mine whose child has Williams Syndrome, a neurodevelopmental disorder, and thought of her as an angelic warrior. But we are also human, and we need a place where we can just be ourselves, without trying to live up to labels such as “brave” or “strong.” A place where we can complain, whine, cry, and let our worst fears come out. Perhaps this place for you is a certain circle of friends, or a support group. Maybe you can find it through writing, either in a journal, or an online blog. Find a place where you can be your most authentic self, with both strengths and weaknesses.
Spirit: Just as it’s necessary for the parent or caregiver to receive nourishing meals, “food for the spirit” cannot be overlooked. Squeezing in some time for prayer, meditation, or another spiritual practice can strengthen you for the day ahead. Parenting a child with a life-altering condition may also bring a spiritual crisis as you re-examine your beliefs. Take the time to journal what you are thinking and feeling. It may be the time for questions, not answers. Write them down, and let them just be, for a while. The answers may come later.
It is hard work you do, getting up each day, continuing to put one foot in front of the other. First step: put on your own oxygen mask. Then, you can take care of your child.
A Prayer
Spirit of Life, our hearts overflow with love for our children, our children who face challenges greater than the ordinary. May we find what will equip us so that we may better care for them: patience, strength, fortitude. May we have a sense of humor to sustain us, and a feeling of peace at the end of each day. May we be blessed, both child and adult. Amen.
A Spiritual Practice
Find a simple song that helps to buoy you up. When my daughter was in the ICU, my husband and I softly sang “Come, Come, Whoever You Are,” to her. Its line “ours is no caravan of despair” was a promise we clung to, and the melody was soothing and peaceful to all of us.
Come, come, whoever you are
Wanderer, worshiper, lover of leaving;
Ours is no caravan of despair.
Come, yet again, come.
“You will get through this.” Those were the life-affirming words given to me by a friend who had gone through something similar. It was not an empty promise, but one born of experience. You can do this. And you, too, will get through this. May the Spirit of Love go with you.
- The Exquisite Joy of Being Miserable - May 21, 2012
- Realities of a New Baby - November 11, 2011
- Accepting Help - November 11, 2011
