The Event: CF Bathroom Observations

Just a little CF bathroom humor this morning. I was thinking of what a friend of mine said the other day when he returned after an extended period in the bathroom. Not long after, I headed for the same destination. He hung his head, chuckled and advised me to avoid the area for as long as possible. Apparently, as he reported, had just suffered "An Event." I chose to use their other potty!

It reminded me of the issues that every CF family experiences. When Holly was diagnosed and in the hospital, even the nurses held their noses when they came in our room as they insisted on examining each diaper. I advocate hazardous duty pay for anyone who's assigned that job.

When we started a parents' support group, we all laughed at the gross topics that became common in our discussions. We were surprised when subjects normally considered inappropriate in polite company became common in our midst. We never expected to discuss our children's poop: floaters, sinkers or just a film of fat coating the surface of the water. But we learned that poop provided a great deal of important information we needed to pay attention to.

Thinking about the unique digestive issues that people with CF experienced caused my, admittedly, a little off-kilter mind to consider solutions to these frequent bathroom Events. I came up with, what I think, is a brilliant solution.

The ideal CF bathroom would open with an airlock door and contain a television right in front of the toilet, complete with surround sound and a stereo for the occupant's entertainment. Of course, a library filled with favorite books would be close by as well.

Now I got the next idea from observing the precautions hospitals take for extremely contagious diseases. The bathroom would be vented outside as fresh air is pumped in. An automatic fragrance dispenser would spritz a gentle fresh scent as needed.

Of course, rather than the usual toilet, this one would have a padded seat and back, complete with head and arm rests for the occupant's comfort. It would be fitted with jets that that would very gently spritz warm water at the touch of a button, similar to a bidet. A discreet container matching the room's decor would hold soothing creams or gels to use after the completion of An Event.

The door to the room would boast a carefully calligraphed sign saying: "Enter" or "Enter at your own risk," and CF families would live happily and odor-free ever after.

5 Ways to Maintain a Healthy Relationship With Your Adult Child

When our children are babies, we learn to cope with one set of difficulties, such as how to get them to take their enzymes without burning their mouths, ensuring they swallow the applesauce, or whatever medium you use before the enzymes digest it. And then there’s the challenge of finding a way to entertain those little ones, so they cooperate with treatments when all they want is to get down to crawl and play or toddle around.

Then they grow, and as they become adolescents, we plead, we cajole, we fight, we do everything we can to entice them to sit down and do their aerosols and chest physiotherapy (or pounding, as we called it) or the Vest. We beg them to “just say no” to cigarettes and so many of the other things that teenagers often experiment with. We do all this, because we love them, and we know the work, the commitment, the sacrifices made are worth it to help them grow up to live out their dreams, while all they want to do is just be “normal,” which, of course, to them means no pills, no treatments.

Then, for those of us parents who are blessed to have our children reach adulthood, we face a whole new set of problems that many of us find ourselves unprepared for. Now they’re independent. They answer to us no more. We’re thrilled as we watch them do what we’ve prepared them for. Perhaps they go to college, maybe they get jobs and live out of reach of our daily supervision. At this point, their independence dictates that they make the choices about their health care. We discipline ourselves to avoid calling every day to check up on them. Then, some of them marry. When that happens, their relationship with us changes for good. Now, someone else replaces us as caretaker. That’s right and healthy and good. But it isn’t necessarily easy for those of us who have, until then, been their primary caregivers. We restrain ourselves from jumping in when we’re sure we know best. We resist the urge to “check in” frequently.

Knowing that we must make that adjustment in our thinking and our behavior and actually doing it are two very different things. Everyone who has children experiences this to a certain point when their nest empties. However, those of us who have committed our lives to caring for our children who cannot be healthy and, quite honestly, might not survive without our time and attention, undergo a more significant loss and experience greater anxiety.

So how do we deal with this? I have been forced into a serious change of behavior by being told in no uncertain terms that I am not allowed to ask about Holly’s health. Ever. At all. That’s hard for any loving mother, but if I am to love her the way she needs to be loved, that’s what I do. Not easy, but worth it to maintain the relationship.

Perhaps if you, as moms of children/adults with CF, realize what independence means to them and take appropriate action from the beginning, you can avoid the extreme, painful and anxiety-provoking consequenses I’ve undergone. How do you do that? Well, obviously, I’m not exactly an expert at it, but here are my suggestions:

1.     When your child leaves home, be sure to talk about her activities, her interests, her friends, whether she’s enjoying her life and other questions that parents of healthy children would ask them. Avoid questions about her health.

2.     Let your child take the lead in discussions about health. If he wants to talk about it, he will. And, he will appreciate the trust you’re demonstrating in his ability to be an adult and take care of himself.

3.     Don’t automatically assume that you’ll go to clinic visits with your child just because you always have. Wait to be invited.

4.     When your child needs you, be there unconditionally. Don’t shotgun her with questions about what she’s been doing to care for herself and immediately tell her what needs to change. Ask questions only occasionally and offer suggestions only if asked. Let your intimate knowledge of your child and your intuition guide your behavior.

5.     Let his CF specialist be the advice-giver. It will go down much easier from an objective party than from mom. Resist the urge to intervene.

This major change in your relationship to your child will not be easily navigated. You will make mistakes. However, mistakes present an opportunity for your relationship with your adult child to grow and improve as you demonstrate trust and open a dialog about your fears and your child’s need for independence.

And last, develop a tough hide and hang in there. It’s worth it in order to maintain a close relationship with your adult child.