Holly Shares

I thought I'd take some time to share, from my perspective, a few things that I thought might be helpful.

First, I am very compliant with my therapies (my regimen was written about in an earlier blog), but was not always. As I've told many parents, what made the difference was a change in perspective from feeling (despite my parents' urgings to the contrary) that I was a slave to the CF master to realizing that the various therapies served my purposes. I loved swimming throughout my school years and college and realized that I swam better after a treatment. I lived in a dorm with a community bathroom and realized that I didn't have to be embarrassed when I was faithful with my enzymes. And now, as the mother of a 7-year-old basketball player, I can cheer louder and enjoy the concessions at games, when I've done what it takes. Looking back it seems that I really became compliant when I went away to school (contrary to popular wisdom) because of my pride. I had a lot invested in showing my parents that I could make my own decisions and to me that meant my decisions would not be the ones they would have made for me. But, when they weren't there to see it, I guess I felt I wouldn't be losing anything. Then I became convinced of the good it was doing me toward my goals and I kept it up even after I came home. So, I guess the nugget of wisdom I'd want you to gain from me is that it's okay to nag, because you're going to anyway - you love us, you can't help it, even now, my daughter gets onto me if I'm not getting to things fast enough for her - and to encourage strongly the participation in anything your child is passionate about, because at some point that will become it's own motivation and consequence which will be much more powerful to your child than your emotional distress. (And resist any temptation to mitigate the natural consequences!)


Second, I cannot strongly enough impress upon you the need to encourage and assist your child(ren) in dreaming big. Reality has little to do with dreaming. Little boys everywhere dream of being astronauts and little girls of being princesses and not because there's any real chance of that happening. Encourage them to dream of universities and scholarships and marriage and children, all the things you'd encourage any other child to dream of. Then, do everything within your power to help them find ways to realize those dreams - get creative. I have much of what I dreamt of, but little of it came in the conventional way and this is true for most of my adult friends with CF. I don't know of any circumstance in which your child would need you to tell him that his dream is out of reach. If it truly is, he will discover it on his own. If you think he's giving up too easily, push a little or find someone he will listen to that can push a little. Don't give in without a fight. This point goes hand-in-hand with the previous point, because if there are no goals to be attained there is no reason to be compliant. Treatments and therapies for their own sake are worthless.
I will give an example from my own life. I started out wanting to be a doctor. Nobody told me I couldn't be or shouldn't be, but somewhere around age 15 I realized that the only kind of doctor I wanted to be was a CF doc and that it would be very emotional for me. I wasn't sure I could handle all of it without taking it personally. I also realized that I really wanted a family and I wasn't sure I was prepared to make the kind of sacrifices it would take to have a family and be a really good doctor; I didn't want to give anybody less than my all. So, I started thinking about other careers. At this point, my health was really poor and I was out of school and in the hospital a lot. I was out so much, in fact, that I was in danger of being failed (my school district was not in compliance with Americans with Disabilities Act at that time, but we weren't in a position to challenge it). Instead of my parents despairing and concluding that all these dreams were foolishness, they looked for a way to make it work out. That way came in taking my GED. Then I started taking a few classes at the local community college, majoring in music education with a focus on violin, which I'd studied for years. I could tailor my load to what I could handle and they were much more flexible. After a few semesters, I was able to get a scholarship to a state university only 3 hours away and near the clinic that had diagnosed me. We worked with the Office of Disabilities to get a few accommodations to give me the best chance at success. One was lowering the amount of credit hours required for full-time status and another was getting permission to turn in assignments or take tests late if I were sick or hospitalized at the time they were due. After two semesters, my health was too poor to return. After a year of floundering about thinking the future wasn't anything to look forward to, I met my husband and married him in short order (7 months).
Now that I was more hopeful about my future, I began reevaluating my goals. I still wanted to teach music, but I knew now that my body wasn't built for a 7-4 M-F schedule. That was a freeing realization, because that meant that I didn't need a degree to get into the classroom. I started by taking a few private students. Then, I began taking "teaching lessons" from a master teacher, who opened the door for me to work with a Conservatory. Soon I was teaching a full studio of private students as well as group lessons and ensembles. I also got involved performing with the local orchestra.
It was rather a round-about route to success and it took some real and discouraging setbacks. But, it ended up much better because the kind of work I got allowed me freedom to rearrange my schedule and to take on more or fewer responsibilities as needed. Then when I became pregnant and had an infant, I had the flexibility I needed to care for her in the way I wanted to and continue to work some as well. there are more examples, but that serves to illustrate my point that my dream was in fact attainable, even though it took some unconventional means.

"Here endeth the lesson"
- Sean Connery The Untouchables

Guest Blogger

Hi, long lost friends! Forgive my long absence from posting. The freelance work I started in July has kept me busy, and I haven't kept up with my blogging as I'd hoped to.

Fortunately, my wonderful daughter Holly has offered to write a post or two. I think, as moms of children/adults with CF, you'll be most interested in her thoughts on things, which may range from ideas on giving your kids hope, motivation to do treatments (yes!), nutrition, and, in general, what it was like to grow up with CF.

She has my permission to share what we, as parents, did right and where we missed the mark. Holly is gracious to understand that we didn't have anyone who'd gone before us to give us the insight I hope she's able to give you. Enjoy, and please comment. We'd love to hear your thoughts.