Sunday, August 2, 2015

For Our Friends

Meet my friend, Ann.

Ann and I have known each other since high school.  We were Maids of Honor for each other, she is Margot's godmother, and our husbands are best friends.  Our friendship is in full bloom and it is beautiful.  I always knew that Ann and I would be friends until our last breath, but then we started having kids...


One day, when Sylvia and Cecilia were about two years old, I watched them play together and I was catapulted into the future.  I caught a glimpse of their high school selves.  Sylvia, leading the way and demanding Cecilia to follow, yet fiercely protecting Cecilia's heart, just like I did for Ann.  Cecilia, the "yes" girl, always up for adventure and bending over backwards to accommodate everyone, but always putting Sylvia first, just like Ann did for me.  It became suddenly apparent that our friendship had sparked something new.  It would last long past our last breath and would continue on in these sweet little girls, like a circle that has been completed and would roll on and on into the future.

Now, meet my friend, Lindsey.


Lindsey and I met four years ago when I started a new teaching job.  I have come to love and respect her as a teacher and a mother and I pray that our friendship will continue until our last breath.  Lindsey has a beautiful daughter, Stella, who has become fast friends with Sylvia.

 
Watching Sylvia and Stella play together should also catapult me into the future.  I should see a complete circle of friendship rolling on and on.  But if things don't change, these little girls won't get to see a fully bloomed friendship.  You see, Stella, our sweet friend, has Cystic Fibrosis.


Have you heard of it?  The Cystic Fibrosis Foundation's website explains it well:

Cystic fibrosis is a life-threatening, genetic disease that causes persistent lung infections and progressively limits the ability to breathe.  In people with CF, a defective gene causes a thick, buildup of mucus in the lungs, pancreas and other organs. In the lungs, the mucus clogs the airways and traps bacteria leading to infections, extensive lung damage and eventually, respiratory failure. In the pancreas, the mucus prevents the release of digestive enzymes that allow the body to break down food and absorb vital nutrients.

In other words, Stella's lungs have mucus in them that make her extremely susceptible to infections.  Lindsey is diligent about keeping Stella away from germs, making sure she eats a healthy diet, and giving her daily breathing treatments.  It's a lot of work to care for a CF patient, but Lindsey does it with grace.

I want you to meet one more friend of mine, Marlayna.


We met two years ago when our daughters became friends in preschool.  As our families spent more time together, it became clear that we are identical.  Our husbands are exactly alike.  Her oldest daughter, Addie, is Sylvia's long lost twin, and her second daughter, Norah, is just like Margot.  In fact, I'm convinced that Norah and Margot are going to burn the preschool down together next year.


Our friendship is blooming and when I watch these girls together, I should see a bright future, but guess what?  Norah has Cystic Fibrosis, too.



Let me tell you more about CF.

Today, there are 30,000 Americans with CF.  We know and love two of them.  Stella and Norah undergo multiple breathing treatments each day.  Treatments include an inhaler and a vibrating vest that helps break up the mucus in their lungs.


They also take enzymes with every snack and every meal to help their bodies digest food.  Their diets are carefully monitored and they are very familiar with doctors and hospitals.  The smallest infection could be life threatening for them.  Since they are so susceptible to germs, and because of something called cross infection, two CF patients can never be around each other.  Which means we can never have our friends over at the same time.

This is completely unacceptable.

These girls deserve life-long friendships.  Their mothers deserve to see their babies carry on into the future, rolling along on the circles of friendships that we've started.  They should be able to cause trouble together and plan weddings together and find godparents for their own babies.  Their mamas shouldn't have to lie awake at night and worry about the next trip to the hospital.  And, although it's petty compared to what Lindsey and Marlayna have to go through, I shouldn't have to pick which family we invite over for a barbeque.

The good news is: there's hope.  Life-long friendships are possible.  A cure is SO INCREDIBLY CLOSE.  Lindsey and Marlayna, along with countless other parents and friends, are running the last mile of this marathon.  They are running it fiercely, too.  In the 1950's, a CF patient rarely lived long enough to attend elementary school, but thanks to warrior mamas like my friends, CF patients now have a life expectancy of 41 years.  That's a huge improvement, yes.  But it's still unacceptable.  That's only half a life.  So, these moms are raising money like....well, like their lives depend on it.

I once asked Marlayna's husband, Jason, how they manage.  How does a parent even make it through the day knowing what we know about CF?  I have a hard time feeding my own kids consistently - how do they do it?  The treatments and the enzymes and the constant, CONSTANT fear of germs....

Here's what he told me.  "You know, it's normal for us.  Norah and Addie are good girls.  We are actually very lucky.  There are others out there who have it so much worse than we do.  If you met Norah at the park, you wouldn't know she has CF.  She makes us laugh.  We make her laugh.  So...you know...that's really all that matters."

I am confident that Sylvia and Stella's friendship will last forever, and that Margot and Norah will be friends until long after my last breath.  I know that a cure will be found soon, but it won't be found without my help.

And your help, which is why I'm writing this post.

Here's what you can do to give these girls the life-long friendships they deserve.  Join us at Night Out For Norah on August 21, an event to raise money for CF research.  It's a night of good drinks, good food, good music, and some amazing silent auction items.  If you can't attend on August 21, or if you live far away but would like to contribute, you can donate on the same webpage.  A cure is close for our friends.  Let's close that circle and let it roll on.  Let's cross that finish line.  As the CF community says, let's make "CF" stand for CURE FOUND!



Click on the link above or go to www.nightoutfornorah.com to purchase tickets or make a donation.  My personal goal is to raise $250 for Night Out For Norah, either through tickets or donations, so if you chose to contribute after reading this post, please let me know!

1 comment:

Lisa Petrie said...

I am Norah's Aunt, Norah's Godmother and I am crying. This is beautiful. I want to thank you for writing this. Marlayna is and always will be my first born (in my heart anyway). I have seen this girl grown into a strong lady I am so proud of. It never ceases to amaze me that each time I turn around I am meeting another friend of hers that is incredible. She is lucky to attract awesome people. I can't wait to meet you as well. I have a hurdle or two to get over to be able to attend the event this year but after reading this blog, I am so ready to try to make it work. Thanks!!