Shane

In memory of Shane Torrence (1/28/93 - 9/11/99)
A mom on a mission raising awareness of the condition that took my only child at age 6 and a half - Congenital Diaphragmatic Hernia CDH takes the lives of 15,000 children every year and harms 15,000 more.
Will you care? http://www.cdhsupport.org

Monday, September 13, 2021

Another Year

 I posted this on social media (that I use to raise awareness and for my job at the charity):

Another year without my little boy.
His death was preventable. If there had been better and more research, more patch options, more sharing of data, a Standard of Care to prevent his first surgeon from using a ridiculous material (never used before or since), a universal protocol on stabilizing CDH kids, better (ANY) info for us parents so we could’ve made informed choices.... my son would still be here. He was not a severe case.
All these years later, we are still fighting for the most basic of things most other anomalies / diseases have. We are still fighting for awareness, funding and an equal seat at the research table. We are still begging people to see these children.... and still even begging those who see them to help them.
We’ve made huge strides but it will never be enough as long as children are still dying.
My CDH family.... I beg of you.... please, please fight more. Not just for your own child. Not just posting on social media. Please roll up your sleeves and help a CDH charity and help build the community to save these precious children. All of them. Don’t “put CDH behind” you after you move on. Don’t say “I fight CDH every day” because you are raising a child with CDH... I did too. But we cannot CHANGE the future for these children unless we fight for the whole community. We have to have a bigger vision and more hands on board who care about these kids. And please, please don’t just post on social media or say” I support CDH families all the time” because they are your friends.
You send your child to school, you meet other parents, you help with homework, you do play dates, but if you don’t join the PTA, don’t volunteer, don’t work as a community.... you’re not helping to better the school that’s there for your child. Make sense?
And my doctor friends on this FB profile.... please, please listen to parents as your teammates. Use patient advocates. Give patients a seat at the research table. Treat us as equals. As partners.
I say all this not to wag a finger but out of sadness... because so many children are suffering and dying unnecessarily when together, we could stop Congenital Diaphragmatic Hernia so quickly.
I know it’s hard to donate. I have donated years of my life, rooms in my house, miles on my cars, my last penny to the charity at times. Because we need to fight CDH.
I know it’s hard to volunteer. I volunteered full time for 15 years. I had a child at home on life support when I began volunteering. I also ran a company for 10 years at the same time. I had a family. I had tragedies. I had illnesses. I have PTSD too. I grieve. I work all the time. Even now I work several jobs and run the charity.
I’m not superwoman.
I just know these kids need help and so few are actually helping them.
I don’t even have a CDH child here now to fight for since Shane died. I get up every day and fight for your kids.... won’t you join me and the other parents at CDHi who are fighting for your kids - and their kids - too?
Saving lives is never convenient or easy.... but look at this face.... all the faces of these precious children who deserve to grow up.... how can we not fight for them all?
So please, help them. Really, physically help them. Donate. Volunteer. Get involved. For all of these children.

But personally...

It's getting harder each year to live immersed in the CDH world for decades after you gone, Shane. You are with me every single day. I'm just getting weary of fighting Congenital Diaphragmatic Herni and begging others to fight too. We shouldn't have to beg. I don't understand how others don't want to fight it collectively to save children.

I couldn't "go on with my life" after your death, knowing that other children could be saved. I'm not made like that. It's hard for me to comprehend that most people are made like that.

I look at your photos every day because my job was created at a charity created because you were born.

I travel around the world now for research for CDH, rare diseases and congenital anomalies and I always have you with me... a pair of wings to physically take you through life with me. 1000's of photos of "you" now. I am trying to get that book done this year.

I am trying so hard to live my life and make you proud but I'd selfishly walk away from the charity and all this work in a heartbeat to have you back, to have never heard of CDH, to have a 28 year old son and dreams of being a Yaya to your children. All the 'what if's" seem to haunt me more with each passing year... all the "never will be's" are so so hard. The reality setting in that I won't grow old with you and a family... it's so hard. Some days it's crushingly hard. I made a lot of decisions in my life to put the charity before myself and now I am dealing with consequences and regrets and jealousy that others never had to make those decisions or give those sacrifices... and they have "normal" lives, families, etc... they could just walk away. I couldn't. It's hard. I just want you back. I want to go back to 1995 over and over again. I literally think about it every day... but I force myself to stop trying to live in the past and to move forward. And my life is GOOD! I am happy! I just grieve and I always will. Because it's not fair and you should be here and the life we planned should have happened. CDH took all that. I will fight that monster until I die. I suppose that's why others have "normal" lives... and why I fight, so they can have those lives. This is why I'm still here. Why I survived the past 2 years despite becoming a patient too. My job here is this. Your job here is this. I hope others whose job this is too will come help fight. I am weary but I won't lay down the sword.

This week, "we" are in Greece.


I always wonder what adventures we would've had if you had lived. I'm trying so hard to have all the adventures you should have had. I'm trying so hard to focus on LIFE!!!

I miss you so much, my love. So very, very much. To the moon and back, I love you always.

Love,
Mommy


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