A Partridge in a Pear Tree Helps Us Keep Things in Perspective

Thinking about the "Twelve Days of Christmas" and the upcoming holiday season, it strikes me how perfect the timing is for this particular holiday. At the end of the year, it's a time for reflection about the blessings, joys, and challenges experienced through the year past. And, with a New Year approaching, it's a time to look ahead with hope and anticipation for what the future brings.

As I reflect on the hard year that our family has personally experienced, like so many other families during these tough times, it's tempting for me to fix my gaze on the challenges: my husband's job struggles, the financial problems, and the kids' health challenges (both have cystic fibrosis). And, then of course, the news reports don't help much as bad news screams from every street corner. It's hard to get away from it all!

And then I think about the song, "The Twelve Days of Christmas" and it reminds me of all the many blessings I have to be thankful for. I am thankful that my true love isn't giving me a bunch of birds, maids, lords, and drummers. Although five golden rings do sound nice.... And I am thankful that we don't live in the 1700's which is when it is thought this song originated. Talk about tough times!

Life then was primarily small farming communities. What you raised or grew, you ate. No electricity, running water, plumbing, internet, or Safeway. Imagine that. Probably half of the population lived at the barest survival level. The poorest families lived together, packed into just one room. There was no welfare or unemployment checks or SSI. If the king or queen didn't like you, off with your head! Of course there was plenty of civil unrest and war: both the French and the American Revolutions occurred during this time.

And then there was the medical "system." Until 1745, barbers performed surgical operations. Yup, you read that right. "Will you be getting your hair cut today or having your appendix removed?" Ewww! In fact, did you know that the red and white barber pole is thought to represent the "blood and bandages" associated with those early dual-role days?

Smallpox was a major scourge during these times. It killed 400,000 Europeans during the 1700's alone and quacks abounded. Because medical knowledge was so limited, desperate people were vulnerable to the promises made by slick and sleazy characters hence the term: "snake oil salesman."

One of the most common treatments for many ailments was bathing in spas. Or drinking spa water. Ewww again! Was that before or after everyone had their weekly bath? Bringing this to a more personal level, babies with CF died fairly soon after birth. But today, those with CF can be very hopeful about living a full, rich life due to the many medical advances we continue to see.

So, as hard as this year has been, in light of the time and place we live in now, I am thankful. Thankful for my faith, my family and friends, my work, my country, and my freedom. And, I am thankful for a wonderful community of people like you, our doctors, and the many others who dedicate their passions, skills, and lives to helping those of us who live with CF to live better. Thank you. And I'm also thankful for a "partridge in a pear tree" for helping me keep things in perspective.

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Lisa C. Greene is the mother of two children with cystic fibrosis, an author and public speaker. She wrote the award-winning book “Parenting Children with Health Issues” with Foster Cline, MD and published by Love and Logic. For more information, see www.ParentingChildrenWithHealthIssues.com.

For more Tips for CF Parents, visit Lisa’s website at www.TipsForCFParents.com.

Turning Knowledge Into Wisdom: Being an Effective Advocate

Sue has a serious chronic medical condition and visits many different doctors each month. She is on top of her medical situation and sometimes brings in new research papers to discuss with her team. When a new doctor prescribed her a medication without explaining what and why, she gently but firmly told him, "I am happy to follow doctor's orders as long as I understand them. When would be a good time to answer my questions?"

Sue is an advocate. She seeks accurate medical facts and information. She empowers herself with knowledge. But knowledge is only half of the story. What good is knowledge without wisdom? Wisdom is knowing how to use knowledge effectively.

Sue sees herself and her doctors as a team. She believes in a collaborative approach to her medical care. But her style is not without conflict. There have been times when busy doctors with a brusque bedside manner didn't particularly like being "second-guessed." But Sue has a great way about her and it's hard not to like her. She is able to detect when she is starting to get some resistance and goes into her "Conflict Resolution Mode":

Step 1. Show empathy and understanding for the other person's position. "Ohhh, it looks like you are super busy today and probably don't have time for my questions. I can understand that."

Step 2. State your position using "AND" and "I" language: "And I can take much better care of myself if I understand the reasons behind your decisions here."

Step 3. Suggest alternatives: "Is there a time that we could talk about this later by phone or even email? I won't take much of your time, I promise. I just have a few basic questions about what you are suggesting. Thank you for being willing to help me out."

Sue is a successful advocate for her healthcare because:

1. She is knowledgeable about her medical condition. She actively seeks accurate information from reliable sources.
2. She stands up for herself and isn't afraid to be assertive.
3. She is calm and respectful even in the face of resistance or conflict.
4. She doesn't take abrupt (some say "rude") medical professionals personally.
5. She is not demanding or threatening.
6. She doesn't tell others what they have to do but instead shares what her needs are.
7. She understands that having an effective approach is in her own best interest so she works hard at learning good communication skills.
8. She tries to be appreciative of the doctor's knowledge and expertise (even if she doesn't like the doctor as a person).
9. She understands that being an advocate is not the same as being pushy or aggressive.
10. She uses a collaborative approach to solving problems.

Sue knows that her good health is ultimately up to her and the choices she makes. And, as an effective advocate, she is prepared and empowered to make good decisions that will impact her life, and those who love her, for years to come.

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Lisa C. Greene is the mother of two children with cystic fibrosis, an author and public speaker. She wrote the award-winning book “Parenting Children with Health Issues” with Foster Cline, MD and published by Love and Logic. For more information, see www.ParentingChildrenWithHealthIssues.com.

Giving Our Child Gifts for a Lifetime: Using Tough Situations as Teachable Moments

A mom of a ten-year-old boy with cystic fibrosis (CF) shared her experience of how her son had been "interrogated," without permission, about his medical condition by two school psychologists. They wanted very detailed information including what kinds of medications he was taking, how much, and the specifics of his medical status.

Of course this loving mother was very upset and justifiably so. Who wouldn't be? After getting feedback from others within the CF community, she decided to go to the school administration and register a complaint. It's worth saying that this happened in another country, not America, so our laws here might protect our children from this sort of thing. But that's not the point of this writing.

As I ponder her story, it strikes me that she was lucky this happened. Yes, you read this right- lucky. She is lucky because now she can teach and model to her son how to:

1. Handle the situation well without being victimized by it.
2. Deal with conflict in a healthy manner.
3. Have an opportunity to experience together the challenges of life with CF that he will face out in the "real world" as an adult.

This story reminds me that as parents, it's the "little" experiences in life that add up to shape and mold who our children ultimately become. If this loving mother simply rants, raves, and complains to everyone who will listen, it is quite possible that she will raise a child who does the same. He will become a victim of his CF.

If this mom goes into the school demanding "restitution" or threatening lawsuits, this child will begin to think he's entitled and will learn that being demanding and threatening is how to resolve problems (good luck to his future wife and children).

And if this mother goes to the school with a curious, open, assertive (not to be confused with aggressive), and collaborative attitude, then she will give her son great gifts: wisdom, the ability to work out problems with others, and a "can-do" attitude.

Here are some examples of some things she might consider saying during the meeting with the school administrators:
• "I am sure you thought you had a good reason to interview my son about his medical condition and I'm curious about what that might be."
• "Is there some reason that you chose not to speak with me about it first?"
• "Are there any issues with my son here at school that led you to feel the need to get his detailed medical information?"
• "In the future, I would like to know about such interviews before they occur. If you feel like you need to speak with my son privately, I am open to that as long as we discuss it first."
• "I would like you to get my permission before you interview him in such a manner again."
• "My son feels really uncomfortable about what happened. I'd like for us to have a discussion with him to process what happened."

Handling these types of moments is never easy but unfortunately, life is filled with them whether children have medical issues or not. Of course having special needs of any kind increases the number and intensity of these moments.

And in these moments- as a parent of two kids with CF myself- when I am tempted to over-react, it helps me to remember the influence I have on my children and it causes me to pause. As my children see how I handle such moments, then they will learn to handle these moments for themselves. And when I handle it well, I will be giving my children gifts that will last a lifetime.

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Lisa C. Greene is the mother of two children with cystic fibrosis, an author and public speaker. She wrote the award-winning book “Parenting Children with Health Issues” with Foster Cline, MD and published by Love and Logic. For more information, see www.ParentingChildrenWithHealthIssues.com.

For more Tips for CF Parents, visit Lisa’s website at www.TipsForCFParents.com.

Sometimes It Is All About CF

It's hard sometimes for my life not to be "all about CF" as much as I try not to let it be.

I just returned from a visit to "Gramma's House" in Florida with my two kids who both have cystic fibrosis. My son is on an inhaled antibiotic which must be done three times a day. So the all-day plane trip from Seattle to Tampa needed to include plans for that including the cleaning and disinfection of the equipment.

Then of course there was the packing. A whole duffel bag filled with medications, nebulizers, mini-compressors, and other medical paraphernalia. Plus there was the vest system (a 40 pound machine that costs about $15,000) that I also had to bring along for our three week visit. And it all needed to be carried on the plane and checked through security. I looked on with envy at other travelers who only had one little bag to carry compared to our seven. Yes, seven. Including our lunch.

Then there was the dog. Yes, the dog. We brought her, too. Figured we brought everything else, might as well add her in. I almost brought the kitchen sink but found a work-around by using Control III to disinfect the antibiotic equipment instead...

The vacation was wonderful and I'd do it all again. Our philosophy has always been: "Live life well with CF, don't let CF run your life." It takes a lot of effort but we do this pretty well, I think. Our kids (so far) are very happy and have wonderful, can-do attitudes. They have enjoyed many years of relative "good health" filled with adventures and just being kids despite the one-to- two hours of medical treatments they need to do each day along with schoolwork, sports, friendships and extra-curricular activities.

Usually I am up to the task of being the "mom-glue" that holds it all together. But today, I feel weary and worn out with it all. My husband's six month job loss has created no small amount of stress- primarily around the medical insurance issues since just our "everyday" medications alone cost about $100,000 a year. Thank Heavens for pharmaceutical coverage which knocks this down to about $12,000 a year out of pocket- still a lot of money but it sure beats $100k!

Then there are the doctors' visits nearly every other week it seems lately, sinus surgeries, and hospital stays for IV antibiotics. Now we have another upcoming visit to "Club Med" (aka: the hospital for a two week round of IV antibiotics) for my son next week as well as a sinus surgery for my daughter- all squeezed in right before school starts. Back to school shopping anyone?

We are so grateful that my husband now has a good job with excellent medical benefits. We hope that life will stabilize soon. Whatever "stabilize" really means when you have two kids with CF. I think that means a lull in between the crises.

I am ready for a good, long lull right about now- after my daughter's surgery and son's round of IV antibiotics, of course. And, I'll do my best to remember that my children are learning how to handle hard times by my example. I know that if I have a positive, "we can get through this" attitude, they will too- now and in the years to come.

I think that's the hardest part of parenting- being a good example when I am weary and sad. But, as a parent educator by profession, the knowledge of how important this is to my precious kiddos will help to keep me on track. Even if I'm not perfect. It's good enough to be good enough. They will also learn by my example that it's okay to be sad and weary for a little while when life is hard. And, as I get back on track, they will learn from that, too.

- Lisa C. Greene, mom of two kids with cystic fibrosis, author and parent educator www.TipsForCFParents.com and www.ParentingChildrenWithHealthIssues.com