Keeping Hope Alive When Your Child Has Special Medical Needs
by Lisa C. Greene
I pull into the carpool lane to pick my kids up from school and am yet again touched by the sight of a service dog with a bright pink lunch pail hanging from her mouth as she trots alongside a young girl in a wheelchair.
And then there is the computer-generated voice that says “Amen!” at just the right moment during church. I am inspired by the young family in the front row as they minister to the physical and spiritual needs of their disabled son who is barely visible amidst the medical equipment that surrounds him. It would be so easy not to go to church but there they are, week after week.
How do these families and others like them keep their hope alive in the face of such daunting challenges?
I am no stranger to hope- or hopelessness for that matter. Both of our children were born with cystic fibrosis. CF is a genetic disease that causes the mucous in the lungs to become thick and sticky which causes lung infections, scar tissue and eventual lung failure. The median life-expectancy is currently about 37 years of age and climbing due to advances in medical technology.
There is great hope for the future of those living with cystic fibrosis and I am generally optimistic about my children’s future. But I know of a beautiful young lady who recently died from the disease at the tender age of twelve. And the many pills, medical treatments and hospital visits that my two children endure serve as a bleak reminder of our race against time with this progressive disease.
Sometimes the icy fingers of hopelessness hide in the shadows around my heart, waiting for a beat to falter so they can enter. But I don’t let hopelessness sneak in. I can’t. My children depend on me. Not only am I their caregiver, but also their role model. They will pick up on my cues as they learn to navigate their own way through a lifetime filled with the trials that their illness will impose upon them. If I model hope, they will be hopeful. If I model despair, then they will be hopeless. So, how do we keep our hope alive even when we don’t feel very hopeful?
Throughout my “CF journey” I have had many teachers encourage me, inspire me and lead the way. And I have noticed they all have one thing in common: gratitude.
A little research on gratitude turned up some interesting things. It is not clear why some people are naturally more positive than others. Perhaps it’s genetic. But it is clear that purposely focusing on what we are thankful for, instead of what we are upset about, will help us feel more optimistic about the future as well as more loving, forgiving, joyful, healthy and, of course, hopeful in the present.
Anabel Stenzel, co-author with twin sister Isabel of the book “The Power of Two,” says:
“Because of my CF, I have received many gifts: resilience, closeness with loved ones, the amazing people one meets in the CF community, and the maturity and depth that living with a chronic and life-threatening disease can bring. Despite living with progressive lung disease that required me to have a lung transplant at age 28, I have learned, loved, seen, heard, eaten, walked, talked, touched, thanked, hoped and dreamed in my lifetime. And I have no regrets."
Ana and Isa are living examples of counting our blessings one by one. The good news is that an attitude of gratitude is a choice. Anyone can be more thankful with a little awareness and effort. Here’s how:
1. Pay attention to your thoughts. Make the decision to replace negative thoughts with positive ones. For example, say “I am thankful for having medical insurance” rather than “What a hassle this insurance company is!” Repeat over and over as necessary!
2. Stay in the present. Focusing on the challenges of the past or on what might happen in the future can rob your joy today. What are you grateful for right now? Clean clothes? A family? Food on the table? Start with the simple things in life that we often take for granted.
3. Take five minutes each day to meditate on one or two things you are thankful for. What blessings did your day hold? A meaningful moment with a loved one? A beautiful sunset? A word of encouragement given or received? A job well done?
4. Begin a “gratitude journal.” Write down one different thing that you are thankful for each day for three weeks. Notice how much happier you feel. Then, keep going.
5. Share your blessings each day with your family- especially your children. Ask them what their blessings were, too. An attitude of gratitude is contagious!
Sometimes it can be difficult to muster up the will to count our blessings. Here are some tips for keeping our hope alive during those especially hard times:
Keep your expectations reasonable. Hoping for a cure can keep us going but can be devastating when it doesn’t happen quickly enough. Miracles can happen! And it’s also important to stay grounded in reality. Having faith with reasonable expectations helps us stay balanced.
Take the time to grieve: Bad things happen. And when they do, we understandably respond with shock, anger and despair. The way to acceptance is through these emotions by allowing ourselves the time and space to grieve. The key is to find a balance and not get stuck. Elise Free, mom of a two-year-old girl with CF nicknamed “Froggy” explains:
“There are levels to my own grief: One day I feel elation that Froggy lives in a time of progressive medicine, and in the next second, sorrow that we were so unlucky to be the one in being a carrier of a defective gene, passing on something dreadful to our child. And then there is the warm wash of gratefulness leading me to appreciate every moment with a monumental love powered by the knowledge that life is fragile and our time together is measured in breaths. We have been given an opportunity: to see life in a dark light, a constant balance of pain and peace, hope and devastation, sorrow and joy. And maybe that is the purpose of life, to find the balance, to accept the reality, but live in the hope.”
Faith filled folks have more hope! When times are really tough, we need something to hold on to- some sort of anchor in the storm. We can find comfort in knowing that there is something bigger than us in all of this; that there is some meaning and purpose for it all- even if we don’t know what that might be.
So, how do we keep our hope alive? Marla, mom of sweet baby Emma (who has cystic fibrosis), sums this up for us perfectly: “I look at my daughter's face. Seeing her beautiful smile gives me hope.”
Lisa C. Greene is the mother of two children with cystic fibrosis, public speaker, and co-author with Foster Cline MD of the book “Parenting Children with Health Issues: Essential Tools, Tips and Tactics for Raising Kids with Chronic Illness, Medical Conditions and Other Special Needs.” For information, free audio and articles, visit www.ParentingChildrenWithHealthIssues.com.