Monday, January 19, 2015

January 19 - Dear Nicholas Sparks

Dear Mr. Sparks,

CHERUBS celebrates our 20th year this year and that is making me often look back over the past 2 decades at all the people who have helped our charity over the years.

It also makes me look back at my own personal CDH journey.   My journey includes my son, the charity and all the families that I have met along the way.   It's been almost 22 years since Shane was born so I have many years of experiencing CDH under my belt now.

I have told you my own story, shared how CDH affects families and marriages.  I thought that today I would share with you how CDH affects other relationships.

When your child is diagnosed with Congenital Diaphragmatic Hernia, it not only turns your life upside down but it analyzes every bit of your life.   Your career takes a back burner to life and death at your baby's bedside.  Your marriage quickly becomes a blanket of solace and support or a lonely island.  Your household and bills become just minor distractions.   Your other children are one of the few things still in focus and you're split between them and the new baby so that no matter where you are, you know there is somewhere else you need to be. Your health, sleep schedule, diet, personal care can easily be forgotten.  

All of these things sound pretty expected given the circumstances.  When any member of a family has a major medical crisis, all of these things come into play.

But what no one tells these families, or maybe what we wouldn't believe even if we were told... is the permanent changes in our groups of close friends and family members.   Not only are we, as parents and as people, challenged to find inner strength and be better people.  But so are the people around us and many will fail.  Many will not even try.

I come from a huge family.  By huge I mean I have 13 aunts and uncles and over 40 first cousins.   We are all not close due to geography and life but we are still family.   I also had 3 younger sisters and 4 older half-siblings.  The family members that I was closest to, the ones that I grew up with, the ones that I always thought would be there... disappeared.  It was "too hard" for them to handle the "emotional stress" of watching me deal with my sick child.   "Yeah, ok then, I'm sorry it's hard on YOU" was a sentence that popped through my mind sarcastically in response but I never cared enough to argue with them about it as I had bigger fights to fight for my son.   I was too busy taking care of my son to care or give them much thought for a long time to be angry and when my son became somewhat "normal", they were back.  Only to disappear forever when he died. 

Yet, family members who I wasn't very close to where the ones genuinely crying at my son's funeral.  They are the ones who put things on his grave.  They are the ones who occasionally donate in his memory.   The first time our charity marched in Washington DC, my cousin took a day off of work and bought her children to march with us.  I've always liked my cousin but I'm older so we didn't have much in common and weren't especially close.  But she dropped everything that day to walk with me and my family in memory of my son, 14 years after he died.

22 years ago I wouldn't have believed any of that, but people's true colors come out during hard times. You see the character of those around you for good or bad and see compassion and loyalty inspired where you least expect it. 

Friendships are the same.  Some survive CDH, some don't.   There will be friends who disappear all at once and those who slip away little bit by little bit.   Most even think they are doing the right thing by not sending that baby shower invitation and not accepting your Facebook friend request.  They "don't want to upset you" when your child is sick or, God forbid, doesn't make it.  There are high school friends who you've survived everything in life with who disappear after CDH.   But that spot is replaced by the friend of a friend you met at that party last year who heard about your child and drops by with dinner and stays for 3 hours just listening to you or watching your kids so you can take a shower.

We've often told families and we're constantly proven right that it's always the people who you would least expect to be there for you, who are and those who you would bet your life would not walk away are the ones who do.  

Looking back my own journey, my life was like a chalkboard wiped clean with the diagnosis of CDH.  Everything I knew was gone.  Everything had to be rebuilt as if there was some great fire that had consumed my entire life.  My home had to change, new job, new location, new friends, new family, new me.

All that sounds depressing and terrifying but even though it was scary, it was a blessing on every level.  I learned what was most important in life and my priorities are much more in order than most.   I am more grateful for the people who stick it out with me during the hard times and can now easily let go of the ones who don't.  I found new friends that have become like family for 20 years now.  I learned that everything else but my child and my little family was negotiable for me.  I became stronger for him.  I leaned on my faith more.   We created a new life that was harder yes, but beautiful beyond measure.  Being a mom was worth every bit of it a million times over.

It's a bit like graduating high school and suddenly, you have to fly on your own and life is completely rebuilt and people leave and new people come in.   It can be a wonderful part of life if see in the beauty inside the terror that is CDH.

So looking back over the past 20 years and thinking about who is still here, who isn't.  Who left and who didn't.  Who we have lost along the way.   Who changed for the better and who changed for the worse.  I have to say that I can see how it was all needed.  People needed to leave so that more suitable people could come in.  Friendships needed to end.  New friendships came along.   This is part of CDH that you don't expect.

I know it may seem like I am rambling and I am sure that my grammar must drive you insane, but I hope that my letters come across as giving more insight into the different parts of CDH and how it affects families forever. 

As families go through their journeys and deal with the emotions of all these complications of CDH, it's important that they know they aren't alone and that their feelings are normal.  That they aren't the only ones whose friendships and families have changed.  It's important that we warn them of things like this when we can so they aren't as brokenhearted and better prepared.  This is just one of the many, many ways CDH affects these families and one of the ways that CHERUBS tries to help.   Our charity is place that these families can come to and cry and vent and celebrate with people who do understand because we've been down that road too.

One thing that keeps going over and over in my mind as I write these letters to you is that I hope, through you, that at least one family finds our charity.  One more family not alone.  365 letters are worth that to me.

Dawn M. Torrence Williamson
Hoping to reach more CDH families

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