Would You Want To Grow Up Like This?

The difference between a twelve year old and a thirteen year old girl is more than just one year! Turning thirteen means you are officially a teenager even though you’ve been acting that way for a long time. They think it’s creepy and disgusting to get hugs and kisses from their parents, Facebook is for old folks, and going out to eat with your parents is not cool. Yet, they are indeed getting older and more mature – one step closer to high school where they will assume even more independence and a host of other responsibilities.

With Deirdre recently reaching the teens we’ve experienced each of these scenarios and a whole lot more. But we were caught off guard at a recent Children’s Hospital visit when they asked her to recite her medications and pulmonary responsibilities. Maureen and I are used to doing this for her but since she has turned thirteen Children’s want kids with cystic fibrosis to gain more independence as they get older and prepare to leave the nest in the next five years or so.

She flawlessly rattled off each one and wowed us all. Yet, as she was doing so we could see her looking at us with the corner of her eye as if to say, “I’m not a little girl anymore and growing up faster than you think.” So true indeed for her and her sisters Leah (17) and Theresa (15). We did reassure her on the way home that we will be with her every step of the way as she battles this dreadful disease. (Oh, and she did let us buy her lunch that day as long as she didn’t see any of her friends!)

As Deirdre gains more independence, the burdens will be greater than those of a healthier child. She struggles with demanding schoolwork, multiple sports and physical training programs – trying to squeeze much into a 24 hour day. Many a night we find her asleep on the couch hooked up to her vibrating vest – a machine that performs chest physiotherapy that frees her lungs of the mucus that builds up. She continues to take upwards of  20 pills a day along with multiple inhalers and sprays.

Have I mentioned she’s thirteen and been doing this for thirteen years?

Cystic fibrosis is a genetic disease affecting the glands that produce mucus, tears, sweat, saliva and digestive juices. The most serious threat is respiratory failure caused by a thick mucus buildup that harbors bacteria which causes lung infections. It’s a horrible, life-threatening disease cutting lives short and depriving people like Deirdre of more tomorrows.

I’m guessing half of the kids you ask do not want to grow up. Have any one of them walk in Deirdre’s shoes for a day and I’m quite confident that none of them would want to live with cystic fibrosis at any age.

Please help us with one of our responsibilities – making sure Deirdre has more tomorrows.

Thank you,

Peter & Maureen