Thursday, August 13, 2015

A Better Way

The CCHS community is in mourning now.  A young mother with two small children had CCHS.  She somehow went to sleep without hooking herself up to her ventilator and passed away. I did not know her and had no interactions with her but somehow it has hit me hard.  I can't imagine the pain her family is going through. 

We work so hard when our kids are young.  We fight for services, go through endless hours of lack of sleep, become nurses when we have no formal training, work tirelessly to keep our kids healthy and alive, even to the point of neglecting ourselves.  Then they begin to grow up.  We start letting go a little at a time.  We send them to school.  We allow them to go places without us.  They grow up.  Giving a vent dependent child their independence is extremely difficult.  I know that one day I will have to let Noah go.  He will leave our home and have his own home.  This is the most terrifying thing.  When our CCHS kids live with us, we control when they hook themselves up, we can hear the alarms and respond while they are sleeping, we drive them around in our cars.  What happens when they grow up?  They leave the house and are responsible for hooking themselves up at night, they are responsible for hearing (or not hearing) their alarms and responding, they are responsible for driving themselves alone.  What happens if they fall asleep watching tv?  or studying? What happens if they get in their car, have an accident and are knocked unconscious?  All of us, at one time or another, have fallen asleep, whether it was during a movie, studying, or even when we weren't feeling 100%.  Our kids do not have this luxury.  One small mistake of not hooking themselves up.  One small car accident.  This could cause them to lose their lives. 

As a fellow CCHS mom said, there has got to be a better way.  Relying on these machines to live is terrifying.  Machines fail.  People make mistakes and neglect to hook themselves up.  Our kids pay for it with their lives.  This is what scares us CCHS parents.  We need a cure.  We need a better solution.  We need to find a way to make our kids lives better. 

RIP Lauren.  May your family and friends find comfort in this difficult time.  May your parents know that they did everything they could do for you.  They are the heroes in that they let you live your life the way you wanted to live.  They let you grow up.  God bless you and your family. 

As for the rest of the CCHS family, we continue to fight.  We continue to look for answers.  We continue to look for a better way. 

(Special thanks to CCHS mom S. Yang for the inspiration for this blog and the blog title)


  1. So well said. My son has CCHS as well and this has hit me hard too. Thank you for your blog and writing what my mind and heart are feeling!!!

    1. You're welcome. It's hit all of us CCHS parents hard.