cysticfibrosismom

I'm just a regular mom, figuring out life with my daughter Sophia, who has cystic fibrosis.Take this journey with me.


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Lessons from my children

Children are pretty incredible little beings. There they are- so little, so dependent. Stuck in a world where all they see in a crowded room are pant legs and jackets. Groping desperately for mommy or daddy. We are their life line. Without us, they would starve for food, for love, for safety. And here we are- so big, so strong. We keep our little ones warm, comforted, sustained. We are so quick to judge when they cry or whine. They should know better. But really, why should they? These poor little creatures are just trying to get by. They desperately want their independence, but know it’s all the way on top of the coat rack. There’s no way they’re going to reach it, but they’re going to get that chair and stand on their tippy-toes trying to get there.

After a particularly rough parenting day/week, I feel so tired I could cry. If a blink lasts too long, see you tomorrow. What makes me so weary? Well, lots of things, but whining, screeching, bossiness, and a healthy dose of heel-dragging doesn’t help. When I get to feeling sorry for myself, I take a look at my desktop background picture (below) and I smile. How can I keep up my grumpiness for long when I see that grin? There’s a little guy who faces obstacles every minute of his life, but is always willing to share a smile. I could learn a thing or two from my little man. Even when ‘life might end’ (aka mommy didn’t let me stand in the middle of the dining room table), there’s always a game hiding around the corner. As long as I take the time to acknowledge the ‘unfairness’ of my actions, Simon will recover and be his jolly ol’ self within minutes.

By writing, by talking to friends, by leaning my head on my husband’s shoulder, I acknowledge my own feelings. Thank you Simon for teaching me to shake it off and get back to having fun.


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The Secret Garden and Cystic Fibrosis

Growing up, I had fond memories of reading The Secret Garden. It captured my imagination. I could picture the wild garden, locked up for years, waiting to be discovered. Every rose petal, every robin’s nest, every blade of grass, every butterfly, was etched in my mind. I could smell the flowers, feel the sun’s heat as I imagined this wonderful secret garden.

A quick recap: Mary Lennox is an ornery girl who goes to live with her uncle after her parents die. She plays on the moors by herself, until she meets Dickon, a quiet and friendly boy who knows a thing or two about gardening. They share the secret garden together. A small and sickly boy named Colin is found crying in one of the rooms. Mary befriends him and introduces him to the garden, where his health improves.

Recently I started pondering the connection between that story and my life today. As you know, I am immersed in the world of cystic fibrosis. I seek to understand what the researchers are studying, and how that knowledge will improve lives. After re-reading The Secret Garden I felt that the analogy to our current understanding of the human body was too cool to ignore. I can’t claim that it’s a perfect analogy, but I like it. Bear with me as I try to explain what’s in my head.

Decades ago, our genetic makeup was poorly understood. Like the Secret Garden, scientists believed genetic diseases to be too complicated to sort out. At first Mary ignores the garden, and plays outside on the moors. As Mary begins to develop an appreciation for the sultry beauty of the moors, and becomes more comfortable exploring her simple surroundings, she gains clarity. Every hill has its place. Every blade of grass follows a pattern. This environment is like the human body- we too are seemingly random, yet greatly ordered.

Once the building blocks of the moors are better understood, the wild garden becomes less daunting. It’s no longer a web of tangled vines and weeds, but rather contains beautiful and intricate regularity. The moors contain our body systems, the garden is our genetic makeup. Less than 3 decades after DNA’s double helix is discovered, a gene responsible for causing cystic fibrosis is found. Interest in genetic research around cystic fibrosis picks up. Mary has a new friend, Dickon, who helps her tame the garden. Few are in this exclusive club, but bit by bit the weeds are being cleared. Those early researchers were faced with a huge challenge. Their ability to see beyond the chaos, to work through the uncertainty, is what has led to success in understanding genetic diseases.

Colin, a small boy confined to a wheelchair, is like the CFTR protein in cystic fibrosis. His weak and poorly formed legs limit him from running with his peers. He sits awkwardly in the Secret Garden, unable to climb the highest tree. The CFTR protein also sits awkwardly, unable to function effectively. Both have the potential to work properly, but there’s work to be done. Until the beauty of the garden can be fully appreciated, the undiscovered sections will lie in waste.  Why can’t Colin explore every corner of the garden? A simple question with a complicated answer.

If Colin’s only limitation is his ability to unlock and open the gate, then researchers have found the key. If he can run boldly to the gate, then the key is truly all he needs. Unfortunately there are few with problems so ‘easy’ to treat. Less than 5% of those with cystic fibrosis have a CFTR deficiency like this, where the protein works properly but cannot pass through the ‘gate’. Most of the time the protein itself is abnormal. It cannot effectively interact with its surroundings. Just like Colin, with weaknesses and malformations that keep him from reaching the gate at all. The key’s discovery falls short of a miracle for him. Scientists are working hard to find a cure, so that he may one day stand up from his wheelchair, run out the gate and into his father’s waiting arms. I hope with all my heart that researchers are close to discovering a treatment for Sophia’s CFTR mutation. If she never struggles to breathe, then my dreams have come true.


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Tough Mother?

Every once in a while I like to challenge myself. Those of you who know me well are probably smirking, thinking ‘yeah, she’s a little crazy sometimes.” Over the years I have made fast decisions about intense physical challenges. I am usually whole-heartedly committed before I really have a chance to think. Some examples that come to mind: running a half marathon, 5-Peaks cross country races, adventure races (8 hours of biking, orienteering/running, and paddling), orienteering races, backcountry camping/hiking the Long Range Traverse in Gros Morne National Park for my honeymoon (multi-day adventure with only a compass, no marked trails). I have rarely trained properly for these events, but am able to get through them on pure mental determination and adrenaline. At the end, I always feel an incredible sense of accomplishment. The endorphins feel pretty awesome too. Jason and I have completed a few races together (and of course our honeymoon), and I feel closer to him and more amazed by him every time we cross a finish line together.

Most recently, I have committed to doing the Tough Mudder. This race is designed by the British Special Forces to be a grueling and intense 10-12 mile obstacle course. It includes climbing 12-foot walls, running through a field of live electricity, jumping over/into mud pits, and running through fire, to name a few. It’s a team event, and requires collaboration to get through successfully. This time I think I should really do some proper training. I have begun a circuit training program set out by Tough Mudder. It’s difficult, and I’m embarrassed by my inability to do burpee’s, but I’ve also had a bit of a reality check… and I’ve come up with a few revelations:

I am healthy. The biggest obstacle I have to face is my weak muscles. I have nothing to complain about. There are thousands of people out there with cystic fibrosis who are struggling to take each breath. I have no excuse not to do this race.

Even though Sophia will likely face challenges with her lungs, there’s a chance they may not limit her. I recently read about a woman named Lisa Bentley who has cystic fibrosis and has WON 11 Ironman competitions (check out http://www.lisabentley.com). That blows my mind.

I want to be a role model for my children. What better way than completing ridiculously hard physical challenges? I hope that the message they get is that you can do anything you set your mind to… not that mommy makes bad decisions 🙂

I’ll keep you updated on my training progress… and if anyone is crazy (or awesome) enough to want to join my team, send me an email: FavoursForCysticFibrosis@gmail.com