When my oldest daughter started school this past September I focused on how she would handle new social settings. I wondered if she’d make friends or if the kids would think she was a weirdo because she wore glasses. I hoped she’d sit still long enough to make it through the teacher’s lessons and that she wouldn’t catch too many “bugs” in the classroom.
My fears were unfounded. She made lots of friends and not a single person made fun of her glasses. She sits still and thoroughly enjoys all of the teacher’s lessons and she hasn’t gotten sick any more than she normally would.
What I didn’t think about was the amazing friendships she’d create at such a young age.
After her first day of school she came home and told me she’d met a boy named Miguel. Of course we said what every parent says, “Ooohh… is he your boyfriend?” a little gentle teasing. “He’s my best friend, mommy!” she said. I’d wait to pick her up after school and each day, which ever one came out first, stood and waited for the other one and they’d come bounding down the stairs together, sometimes hand in hand, always with big smiles on their faces, towards me and Miguel’s mother, Darcie.
We’d struck up a friendship waiting for the kids, watching how they lit up at the sight of each other. I’d never even thought of that part of having a child in school. I’d get to meet new people too!
One day, as we were trying to corral the kids to each of our cars, she said “Hey Miguel, we have to get home to do a treatment.” and I thought, oh, he must have asthma. I said something to that affect and she said “No, actually he has cystic fibrosis and so does his little sister Maya.”
Wow. I was shocked. So many thoughts flooded my mind. All of my worries seemed so trivial in comparison. My heart broke thinking of what they must go through daily in order to maintain a normal life, and the fears they must have about the future.
But this is not a sob story! Miguel and Maya are living in an amazing time for cystic fibrosis research and treatment and even a CURE on the horizon!
A little info about cystic fibrosis from www.cff.org:
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:
- clogs the lungs and leads to life-threatening lung infections; and
- obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.
Symptoms of Cystic Fibrosis
People with CF can have a variety of symptoms, including:
- very salty-tasting skin;
- persistent coughing, at times with phlegm;
- frequent lung infections;
- wheezing or shortness of breath;
- poor growth/weight gain in spite of a good appetite; and
- frequent greasy, bulky stools or difficulty in bowel movements.
- About 1,000 new cases of cystic fibrosis are diagnosed each year.
- More than 70% of patients are diagnosed by age two.
- More than 45% of the CF patient population is age 18 or older.
- The predicted median age of survival for a person with CF is in the early 40s.
Miguel and Maya are awesome kids! Miguel plays baseball, loves Legos and has the most amazing laugh. Maya does gymnastics, loves her sunglasses, and tells the cutest little stories. They are just normal kids fighting a tremendous battle with a huge army behind them.
You can be part of that army, or one of Miguel and Maya’s Amigos, by walking with them on Saturday, May 3rd, at Riverwinds Community Center, in West Deptford, NJ for their 7th Annual Great Strides Walk! Registration is at 9 AM, Team Picture at 9:30 AM, Walk Start 10 AM. Why not take a nice walk for a great cause?
If you’re reading this from a far away land and would care to donate to this amazing cause, visit Miguel and Maya’s Amigos.
Tonight Felicity started talking about when she got older. She said “Mommy, I want to be an artist, and a dancer and a scientist. I want to make potions that can make people feel better and be healthy all the time. I can do all of those things, right? I don’t have to choose?” “Yes”, I said, “you can do them all.” Let’s help make those potions, people!