Friday, February 20, 2015

February 20 - Dear Nicholas Sparks

Dear Mr. Sparks,

It's Day 5 here outside of Raleigh of being snowed/iced in.  

We didn't get that much snow and ice but my house sits on top of a hill with a steep driveway and a neighbor who likes to park directly across the street from the bottom of the driveway.  So that even if we did try to leave, the odds of sliding into his car are high.   To make matters worse, our driveway always takes a minimum 3 extra days to thaw out than everyone else's driveway in the neighborhood because it is in complete shade all day long.  

First world problems, right?

20 years ago, when my son was little, this was my norm.  We didn't leave the house for months during the cold and flu season, except for doctor appointments.  The occupational, physical, speech and sight therapists came to our home.   There were no trips to the store with him in too, no visits with family and friends except for the holidays - if no one was sick.   I was in my early 20's and while my friends were out partying and being kids, I had a kid.  A sick kid at that.  Months on end locked up without the internet or a smart phone in 1994... can you imagine?   I actually read books, painted and watched movies and my son had my undivided attention.   We played, we learned, we were a family.  

Isolation is common for CDH kids, or should be.   These children do not have healthy lungs and a common cold can kill a CDH survivor.   I know I wrote before about the CDH community losing a child to RSV this year.  Now, it's up to 4 children lost to CDH and more hospitalizations from pneumonia than I can keep up with.  

Our CDH families are posting warnings on their doors asking friends and family to stay away.  There are notes on strollers and face masks, asking strangers not to talk to their children out of fear of germs.   Vaccine fears are high for kids of healthy parents these days with all the measles and whooping cough cases in the news.  That fear is multiplied by 100 for CDH parents.   And these families still fight tooth and nail to get everyone to understand how severe CDH is and why their children who look "healthy" need protection.  

Moms and dads now have social media to not feel lonely during the winter.   They can talk to people 24/7 if they want.   I imagine seeing photos of healthy kids playing in the snow must be hard, but our CDH survivors will get there too as they get older and more stable.   There will be snow days and snowmen, laughing with friends, snowball fights.  Someday, not that far away for these kids. 

Honestly, I am grateful for those days of isolation and grateful the internet wasn't around yet.   While it may have seemed hard at the time, those were the best days. 

Dawn Torrence Williamson
Nostalgic Grieving CDH Mom

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