Advocating for a Child who has Cystic Fibrosis.

Interview with Lisa Greene, mother of a child with Cystic Fibrosis.

By Pat Linkhorn

Could you please share your personal story of parenting your children who have special health issues?

I have to start with saying that, like many of you, I never dreamed that I would be writing about parenting special needs kids or living it. Life has so many unexpected twists and turns…

Both of our children have cystic fibrosis which is a genetic disease that causes the mucous in the lungs to become thick and sticky which causes lung infections and scar tissue and can lead to lung failure. The median life-expectancy is currently about 37 years of age and climbing due to great advances in medical technology.

There is lots of medical care involved with CF. Of course, this gives us great hope for the future but is also what causes day-to-day frustration because it is a lot to manage. Our kids take 14 different medical prescriptions each day between them. Three are inhaled along with doing chest physical therapy so that takes us about 2 hours per day to get through. Our kids have had five nasal surgeries between them and Jacob was hospitalized for two weeks for heavy-duty IV antibiotics (a normal part of CF life). Add in the normal demands of life like homework, sports, friendships, etc. and life can get pretty busy and stressful!

I had never even heard of cystic fibrosis until our kids were born with it. Perhaps naively, we were completely unprepared for the possibility of anything other than a "normal birth." It has taken me awhile to adjust to the reality of parenting children with serious medical challenges and I have finally come to the place of acceptance. But just when I think I have things figured out and "under control" some new challenge comes along that needs to be dealt with. So life with two CF kids, for me, is a continual balancing act. It is filled with great joy and blessings and can also be filled with great pain at times, too.

What are the biggest challenges in parenting children with cystic fibrosis?

There are many things to juggle doctor's appointments, dealing with insurance companies, managing medications, hospitalizations, school and peer issues, time management challenges, etc. It takes a lot of time, patience and energy to handle all of these details. But what I find most difficult is handling the emotional aspects of raising kids with CF. It seems like we "live on the edge." It doesn't take much to trigger the sadness, worry, and fear that continually lurks beneath the surface.

Since CF is a progressive disease, our children will most likely get sicker over time barring any major medical breakthroughs which we are very hopeful for, of course. Both kids are relatively healthy right now so most of the time I am able to stay focused on the hope and enjoy the blessings of today. But when one of them gets sick or I hear about another young person dying from CF, I can quickly go back to the "dark days" of their initial diagnosis.

Even the simple things in life can cause angst: "Will my son take his medications and eat properly at the sleepover?" "Will his classmates make fun of him about his long bathroom breaks and excessive gas (both a part of life with CF)?" I want my children to live as normal a life as possible so how do I balance "being normal" with being safe? How do I best prepare my kids for the real world where I won't always be there to protect them, take care of them and kiss away their tears?

It's important that I cope well with these challenges so that I can empower my children to cope well, too. Easier said than done! And, that's why I asked Dr. Cline to help me write this book- because I need answers to these tough questions. My kids' lives depend on it.

How have these principles helped you cope with cystic fibrosis?

I know that I am doing all of the right things to give my kids every chance at living a healthy, happy, long life. Good parenting skills are critical when the stakes are so high. We need to be very intentional about our parenting styles and responses when kids have serious health issues like cystic fibrosis or diabetes. As unpopular a notion as this is, there really are right and wrong ways to parent a child. Using the wrong approach with the wrong child can have devastating consequences when dealing with medical issues. Teenage rebellion can become truly life- threatening if a child uses his or her medical issues in a battle for control with parents.

The problem is that it isn't always obvious what works and doesn't work when kids are young. Then when they become teenagers, it's more difficult to course correct. Using threats and punishment might work well in the short run because parents can scare most kids into complying. However, this can cause problems with rebellion in the long run. Bribes work, too, in the short run when kids are young but then they come to expect it and that's a problem. And parenting is a completely different story when hormones and peer-pressure kick in so bribes, threats and punishment don't work so well anymore.

This is why it is so important to find a parenting program as early in a child's life as possible- one that teaches good, healthy parenting skills that carry over into the teen years and don't just address the relatively simple potty training years. Ours does this with our ages and stages information and the tools we teach are just as effective with teens as they are with elementary aged kids which is one of the wonderful things about Love and Logic. Of course I hope you give our book and audios a chance but there are plenty of other good parenting programs out there, too. Just make sure that they are based on positive discipline rather than fear-based, punitive approaches. Healthy parenting is not permissive nor is it demanding. It is important to learn how to be both loving and firm whenever we discipline our kids.

There are no guarantees in parenting. Even if we do everything "right," our kids might still make bad decisions and get involved in things we'd rather they not. And, plenty of ineffective parents have raised kids who have turned out just fine. But, there is no doubt that using effective parenting skills will increase the odds that our kids will make wise life-decisions. And I can rest in peace knowing I did my best for my kids. The rest is up to them.

What advice would you like to share with parents of children with cystic fibrosis?

Here are some of the bits and pieces of wisdom that I have gleaned along the way. And I'm sure there will be more down the road!

1. Be prudent, not paranoid: It is easy to become paranoid about a lot of things when parenting a child with cystic fibrosis but we have to remember that our kids are children, not a disease. When people with CF get a cold, it can develop into a lung infection so we have to be careful about exposing our kids to situations where they might get sick. But, we can't protect them from everything and it's easy to go overboard.

In the beginning, I did go overboard! At the sound of another child's sniffle we would leave the park. I tried to insulate my kids from every possibility of getting sick. I soon realized that not only was it ineffective because they still caught colds but also that over-protection would begin to impact their self-image and social development.

So I came up with this little mantra, "prudent, not paranoid," to help me when I feel the overwhelming urge to whisk my kids away at the slightest hint of a playmate's runny nose. It helps keep me balanced between being careful, which is of course important, but not going overboard. So, instead of leaving the park at the sound of a coughing kid, we just go to another part of it. I don't wipe down grocery carts with anti-bacterial wipes but I do still carry hand wash with me everywhere!

2. Knowledge is power: With a complex disease like CF, there is so much information to learn and it is an ongoing process. In the beginning, it can be overwhelming because of all of the emotions that are swirling about plus the medical lingo that is hard to understand. It is important to take off bite size pieces and take the time to absorb the information at a pace you are comfortable with. And keep at it. Never stop learning because knowledge truly is power. Medical professionals are humans and prone to error just like the rest of us. There is no substitute for being an involved, aware, and informed partner in your child's care. No one cares about our child like we do.

Internet support groups are valuable for helping understand complex medical concepts plus the love and caring of other people in the same boat can be like a life-line in tough times.

3. Good self care: In pretty much every book or article on parenting kids with special needs you will find mention of the importance of good parental self-care. That's because it is probably one of the hardest things to accomplish yet one of the most important. We cannot take good care of our kids if we are tired, stressed and burnt-out.

Furthermore, we are the example that our kids will follow. If we don't take the time to take care of ourselves, we are teaching our kids by example not to take care of themselves. So, as hard as it is, you need to take some time for yourself even if it is measured in minutes. Five minutes of quiet time, deep breathing or meditation can go a long ways during a hectic, stressful day. And don't forget that not tolerating disrespect from our kids (or anyone else for that matter) is an important part of taking good care of ourselves. And again, here is where good parenting skills can be so helpful.

In conclusion, I would like to say that despite the challenges of living with CF there have been many blessings that have come from this experience: the amazing people we have met along the way, the love that is shared, the gift of giving to others, the deepening of faith and compassion, and the understanding of what is really important in life. There is a lot of research being done to improve the quality of life for those living with CF and great hope for a cure in the near future. By staying focused on the positive and being grateful for our blessings, we can keep our spirits up and our hope alive.

Best wishes to you all for healthy, happy families.
Lisa Greene

Pat Linkhorn is a professional advocate for families with children who have special needs. She is the author of Off the Fence : Disability Advocacy. She is also experienced parent and has two girls with special needs - autism and blindness due to prematurity. Visit her website.