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

Sunday, September 11, 2016

Telling Shane's Story on the Annivesary of His Death

17 years ago you earned your wings, Shane.   It's been at least 10 years since I sat down and told your whole story.   I don't know why.  Maybe because it's my job to represent 6000 children born with CDH.  Maybe because it drives me nuts to see people work so hard to elevate one patient's name when so many others are sick and dying too.   Maybe because I was raising you to be kind and humble and I never wanted the charity to be about you.  Or maybe it was simply because it's painful to share so much and I just wanted to keep you to myself.

But more than half of the families at CHERUBS have never heard your story.  Many of the new generation don't see me as a grieving CDH mom too.   Your name and photo is rarely included on awareness projects when they list all their CDH friends' children.  I'm just here to provide a service, run the charity, give free stuff.... to some.  Not everyone thinks that way.   Some remember.  But this problem has gotten worse the past 2 years.  This generation is not like the one that was here when we started, when everyone just wanted to help everyone and no put their child first and there was no social media or cliques or drama.  The cause came first.  Saving babies came first.

So many have asked about you lately though... and I admit, the mom side, the human side of me... it hurts when you are forgotten.  Above all, I am your mommy.   You matter too.   You lived.  You fought CDH.  Your memory lives on.

So on your angelversary, I decided to do a live Facebook video and share your story.  I had no intention of crying, but then I wear my heart on my sleeve.  It is raw, it is true, is our story.  




I love you and miss you my son, forever. 

Wednesday, April 6, 2016

Congenital Diaphragmatic Hernia Awareness Month


This photo was taken in 2008. On the 8th anniversary of my son's death. It may look like a strange children's party at the cemetery, but sending balloons to Heaven is all a grieving parent has sometimes.

I'm posting this for Congenital Diaphragmatic Hernia Awareness Month

I don't have school photos or a graduation photo. I don't make posts about my son not picking up his dirty socks off the floor or playing his music too loud. I've never posted a photo of his first baseball game. I've never had such a photo. I will never have such a photo. You won't see me complaining about having a lazy 23-yr-old who won't finish his college classes or get a job. I wish I could have him here to complain about. I even wish I could still complain about how hard it was to have a sick child or spend nights in the hospital. I'd give anything to have to wake up at 2:00 am for a broken feeding pump or to change a diaper. I'd love to stress about another IEP meeting or spend hours a week in physical therapy, occupational therapy, speech therapy and sight therapy. I miss fighting with the insurance company. I'd love to pinch every penny to afford diapers and gas to the hospital because my ex was out of work half the month because Shane was very sick in the hospital. I'd give my life to hear him cry or squeal or play a musical toy for the 10000th time and grate on my last nerve because I'm emotionally and physically exhausted. I can still sing every song put out by Sesame Street from 1993 to 1999. I wish I was tripping on Shane's toys in the floor. I'd love to have his surgeon on speed dial still. I'd even love to have back the guilt that I felt when I complained about all the issues of having a medically fragile child when I knew so many who didn't have their children. That guilt was easier than this. Anything, anything but this. How little did I know then how much I'd miss that life when all I did was complain about how hard it was even though I knew I was blessed. There was no way to comprehend how much I'd miss it. How much I'd miss him. After all these years, I still miss him and need him like I need air to breathe. 
 
All I have are visits to the cemetery. I have just memories of worry and pain and hardship and watching my child struggle his whole life. I don't have my child. CDH did that. 50% of families only have memories. 1000's of families just like mine.

Learn more about CDH at http://www.cherubs.org

Sunday, December 20, 2015

Merry Christmas, my son




 
Incorporating Shane's memory into the office for Christmas.

DISCLAIMER:

Have you seen all the photos in the news about grieving parents incorporating their children's memories into photos? I've become obsessed with them. I think they are beautiful. What do you all think?...

I recently moved and I've been looking at photos of Shane that i haven't looked at in years. It's been emotionally draining. Tonight I just felt pulled to do this photo. I have 10000 other things to do before Christmas but I couldn't shake this so I gave in and did it.

I don't have a little family (no husband or other kids - going through a divorce) so what I do have for a family and where my son's memory is remembered the most is at CHERUBS. This is our office hallway. The tree is decorated with my personal ornaments, including Shane's. This is where his spirit lives on for me. This photo is a way to include him in my current life and raise awareness. It is symbolic. It's not the best graphic quality... I have never done this before.

I have a very dear friend helping with a project similar to this (his will be much better than mine! He's an amazing photographer) and I've spent months talking to him about a way to do this for all our grieving parents. We are working on ideas. How many of you would be interested?

So here it is. Little afraid to post this as there are 3000+ eyes on this profile. I don't mean to offend anyone. Please don't offend me either. I won't deal with negative comments or judgmental comments. I will freely use the unfriend button.

If you're not familiar with CDH and Shane's story, you can go to CHERUBS site at http://www.cherubs.org/ or Shane's site at http://www.shane-torrence.com/


Wednesday, January 28, 2015

Happy 22nd Birthday, Shane

So much has happened since my last post in September.  So many good things.  Awards, events and now we are close to raising $1 Million for CDH.   All good stuff.

We are working hard and staying busy but days like today are still hard.

For all of 2015, we are writing open letters to Nicholas Sparks to raise CDH Awareness.   I got the opportunity to meet him, he knows about the letters and hopefully will decide to help us.  Crazy idea?  Of course.  That's what we're best at!  Someone has to help these kids.

This is my letter to Mr. Sparks for today.  It's about Shane's 22nd Birthday.

Happy Birthday, sweetheart.  Mommy loves and misses you always.





Friday, September 26, 2014

CHERUBS rang the Closing Bell on the New York Stock Exchange

This is where I was last month...

CHERUBS rang the Closing Bell on the New York Stock Exchange on Friday, August 29, 2014, raising Congenital Diaphragmatic Hernia Awareness.  That's me, Shane's mom, with the gavel.


Thursday, September 11, 2014

15 Years Since I Said Good-Bye

September 11th marks 15 years since I last held you, kissed you, rocked you to death, looked at your face, tucked you in.  15 years ago CDH took you away from us.  Sometimes it seems like yesterday and sometimes like a different life.

It's been a very busy year at the charity and I've been very busy remembering you, my son, my Shane.  I took photos around Ireland with wings for you and all the cherubs.  I was honored to stand with our charity and ring the closing bell on the New York Stock Exchange 2 weeks ago.  I went to Capitol Hill for all of you.  I lit a candle for you in St. Patrick's Cathedral in Dublin.  I let balloons go for you in North Carolina.  I remember you, Shane.  Every single day.  And I get up every single morning and I live.  I really LIVE.  Because if you can't be here to live and go on adventures and grow.... then I will do enough for the both of us.


"Being angry with God" has been a hot topic this year and I have to say... I have never been angry at God.  I never asked "why you" or "why me".  Why not you?  Why not me?  Babies get sick, children die, CDH strikes.  Why would we be so special as to have immunity to that?   Why would I wish it on someone else to spare us?   This is the hand we were dealt, the lives were meant to have.  And somehow, I think you chose this.  I think you knew.  And I think I'm the most blessed mommy in the world to have had 6 and a half years with you.  How could I ever be angry when I'm so thankful?  Is it fair?  Of course not.  But I'd rather accept what is and make the best out of it and honor your memory than crumble up and die or cloud your memory with anger.  You didn't live or die in vain.  I won't either.  I owe you that.

I have met many, many other CDH families this year.  I learn from every single one of them.  I am in awe of Zoe's compassion, humbled by Jennifer's strength, inspired by Clair's tenacity, calmed by Ashley's grace, pushed by Tara's passion, wowed by Josh's loyalty, floored by Tracy's generosity.... every single day I learn from them and their children.   And every single day I feel closer to you by being closer to them.  And the cherubs... Princess Charley has your other "baby doll" because it felt like it was always meant to be given to her.   I see you in her so much but such a determination and strength... she's going to be here a long time and probably will have my job some day.   I hope.   Brandon, your buddy... he's 18 now.  Aunt Tara still like my sister.  Aunt Barb now I hope with you.  And I pray you're watching over Aunt Judi and Brenda.   Life goes on and new CDH families come along, new friendships are made and the old ones are cemented in my heart forever.   I cry over every baby lost, knowing the journey their mom and dad is now taking and I ask you to guide each of them up there. 

15 years... you're doing your job and I'm doing mine.  <3 p="">

Saturday, April 26, 2014

Shane's Story - Chapter 16

It wouldn't be a complete story without including how Shane lives on and how I survived grief.

Yes, that's "survived grief".  Because not everyone does.  There is a word for the loss of a parent (orphan) or the loss of a spouse (widow/widower) but no word in the English language for the loss of a child.  I thought depression from raising a special needs child was hard.... that was a cake walk compared to grief.

I wish I could say that Jeremy and I made it through grief together, but we didn't.  We both handled it in our own ways, away from each other.   We were still young - only 25 when Shane died.  Too young to cope with something so horrific.  My entire world had revolved around Shane and then he was gone.  People gathered around us when he died, then they were gone back to their normal lives.   The world kept going on without my son... didn't everyone know he died?   How could they act like nothing had happened?   Jeremy went back to work and I as home.  Alone.  All day.  People get back to their lives and stop checking in on you after a week or two.  It's human but being alone in grief is like solitary confinement and it's you alone with your memories, thoughts, regrets, grief.   I kept waiting for Shane to walk down the hall with all his toys or bang a door shut (which he always did when someone left a door open).  I thought I heard him blow raspberries.  I found his toys under the sofa where he threw them.  His formula was still stockpiled in the kitchen.  His schoolwork still stacked up.  His dirty clothes still in the laundry.   Wasn't he just right here???  Every day felt like it took me farther and farther from him.  We were so blessed to have so much time with him and to have him home but his memory was everywhere, there was no escape.  Not at home, not at family members' homes, not in the car, not even at the grocery store... he was everywhere and there was very little respite from the suffocating memories and grief.

Making it harder was having a tremendous amount of guilt for being a grieving CDH parent who had a ton memories and photos and time with my cherub when so many hadn't.  I didn't fit in with the survivors anymore and I didn't fit in with the grieving parents either.   I was in between both worlds and I now knew enough to be able to support almost any CDH family from first-hand knowledge.  It was a degree I didn't want.  I felt like I couldn't/shouldn't talk about Shane because his story terrified expectant parents and parents of survivors and saddened grieving parents.  I ran a support group but needed support myself.  I was a mess.  Don't get me wrong, the charity members were amazingly supportive but how could I lead now when I was so weak?  I had been so full of myself, so sure that I had some secret weapon to beat CDH.  I was put in my place.  I knew nothing, I probably never did.  I had just tried my best to be a good mom and we were blessed.  It was never in my hands.

Jeremy and I tried to make it work but we didn't have the coping skills or maturity to stay married.  We were still just 25.  Too many bad things had happened to us during 7 years.  We only reminded each other of pain.   We haven't talked for 10 years now but I wish we did.  He's the only other person in the world who knew and loved our son the same way I did, has the same memories of him that I do.  We will share that always.   I wish him well and hope he found happiness again.

The charity secretary at the time, Judi, took over for me for a while and did an amazing job. She drove to my house when Shane died - she was the first person I called other than my parents from the hospital.  She was an anchor for me through everything and being a grieving CDH mom herself, she knew what to do, what to say.  We were a great team and she had unlimited energy and passion to help CDH families like I did.  2 years after Shane's death to the day, Judi was in the Pentagon during 9-11.  She called me during the event, terrified.  That's the type of friends we were.  She survived but was sickened by asbestos and is no longer involved with us because of severe disabilities.  I really hate September 11th; it took 2 people from us.

Within those 2 years, I also lost my father-figure, my grandfather.   My baby sister was diagnosed with terminal cancer.  Judi started becoming very ill.   I did a lot of driving back and forth to all of them.  Alone.  Being alone in a car with all your memories and grief is hell for a grieving parent but I learned to cope with it.

What got me through when I really had NOTHING left?  My sister needed me.  Her 3 kids needed me.  She never knew it but she saved me.  Watching her fight so hard to live made me feel like an idiot wanting so bad to give up.   God didn't hear my pleas to take me instead of her, like He didn't hear my pleas to take me instead of Shane so I had better straighten up and get out of my self-pity hole because she needed me.  When she took her last breath after fighting Rhabdomyosarcoma for 2 years... I felt Shane in that hospital room with us.  I know he was there to come get her and no one will ever convince me otherwise.

After she died, grief set in again.  Now what?  In all it was about 5 years of non-stop rolling waves of grief.  It took me 2 years to go back into Shane's room and only then because I had to move.  Packing up his things was like burying him again.   Saying good-bye to my family, my home... it truly almost broke me.

But it didn't.  It took me a few more years to grieve my sister and grandfather now too and get my life back together.   During this time the charity work slowed as I focused on helping with my sister, her kids, divorcing, getting a job, moving, surviving.  Judi was sick and unable to help.  I asked for volunteers, I asked for help and no one stood up.  11 years later I still get comments about how CHERUBS wasn't there for a few years (we were here, the on-line support was still there).... but I was just a young, grieving mom volunteering to try to help others when I could.  I did the best I could at the time. 


Fast forward a few years.... and I DID survive!  I became stronger, independent, self-sufficient, ran my own company and slowly rebuilt my life.  I got up every day and forced myself to look forward instead of backward.  I wasn't going to stop living too.  And when I was able, I grew the charity more as I could.   Grief never ends.  You never stop missing your child but it does get easier to cope with and manage grief.   There comes a point when you stop crying and start smiling missing your child.  I don't know exactly when it happened for me... maybe around year 5.  But it happened.  I wouldn't trade a single, solitary minute of my life with Shane or my grief if it meant never having him.  He was and always be the best part of me and the biggest part of my heart.

8 years after I lost Shane, 6 years after Jeremy left... I met Craig.  He gave me my laugh back.  He taught me how to have fun and enjoy life and see there are other things in this world except CDH and grief... imagine that!   We were married in 2008 and I became step-mom to twins, Braden and Garret, who are now freshmen in college.  I get to be a step-mom to these 2 boys I love as much as if I gave birth to them - even though they were teenagers when I got them.  Let me just say that dealing with "normal" parenting issues has been an eye-opener but I feel so blessed... normal stuff like teenage years and bad grades and smart mouths!  Not hospital stays, surgeries, therapies and feeding tubes.   It's a completely different world that I love equally.   Having a family again means everything to me.  I have 3 sons and a husband that I love more than anything on earth.

I never had more kids of my own.  I desperately wanted to but it wasn't meant to be for me I suppose.  But I have 1000's of kids through the charity, my boys, my nieces and nephews.  I am surrounded by a lot of love and a lot of children... what could be better than that?

Now, I work just 1 job - at CHERUBS, so that I can have a "normal" life and time with my family.  Not that I don't still work 60 hour weeks sometimes!  :)

I never thought I could be happy again after losing Shane.  I never thought I'd have a family again or a life that meant anything without him.  I was wrong.  Now each day doesn't take me farther away from him but closer to him.