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, January 28, 2018

Happy 25th Birthday, Shane

25 years ago today..... how can it be 25 years?   I still feel 25 years old myself.



I still remember every single second of the day that you were born.  Every.  Single.  Second.  I relive it every year.   PTSD and mom pride all wrapped into one.

I remember all 6 of your birthdays.   The very best days of my life.   I remember your laughing.  You blowing raspberries happily as you read a new book or played with a new matchbox car that you received for your birthday.   I remember the way you felt in my lap as you played with those toys.  I remember being so happy.  So very, very happy.   A house full of family and friends, celebrating YOU.  That you were here another year.   Our families were so close then.  All the kids so little.   Even though we'd been through a lot already at the time with all your medical issues, we were so very naive of how horrific life could be.  We still had you.  We still believed that nothing truly awful could happen.  We were blissfully unaware that you'd only have 6 birthdays.

You've been visiting my dreams lately.  When I'm completely overwhelmed with the charity work or when I was going through divorce court with your ex-step-dad or when I just got tired and selfish and angry that life hasn't turned out exactly how I had planned... growing old watching you grow up with a house full of siblings and then watching you go to college, marry, making me a grandmother.   I'm not bitter, I embrace that that wasn't the life we were supposed to have.  I understand your purpose.  And mine.  I accept that.  I work hard to fulfill your mission.  But I'm human.  I have good days and bad.  And you've let me know several times this year that you are here with me.

Today, I heard you.  I'm in Texas at a conference, holed up in my hotel room sick instead of seeing other CDH families today.   No sleep after being kept awake by groups of dancers/cheerleaders at 1:00 am in the hotel.   A bit cranky.   Happily single but frustrated with dating.  As usual, your birthday and angelversary weed out the weak guys.  Sitting at breakfast and annoyed that the guy I currently have a crush on hasn't acknowledged your birthday.  Hasn't said a word to me.  Hasn't shown any hint that he actually cares about me, or you.  And another one bites the dust.  Was expecting better from him.  Just a text of "thinking of you today" is not too much to ask, right?   I go through this every single birthday and angelversary.  Because I want the man I'm dating to respect your memory.  As he should.  So years of this nonsense... 3 years of dismissing guys who lack empathy... annoyed.   You'd be 25 years old this year... it's hard.   I do want to curl up in someone's arms and cry.  I'm your mom.  This day hurts.  Your memory has always been the ruler by which I measure a man's character.  No one has measured up so far.  Not even close.   How sad is it that the absolute lowest standard of just a comment, a kind word, an acknowledgment... is too much for most.  No man but your dad will ever truly understand, I get that.  But kindness in the world is so hard to find now.  The world is so much harsher now than when you were here in it.  Maybe it's because the world is harsher... or maybe because I'm more awake to it without you. 

So I'm eating breakfast and wallowing in self-pity and missing you and annoyed at this guy and annoyed that this guy is even a thought when today should be about YOU.   Then.... clear as day, I heard a young man's voice say "Mom, you deserve better".  As if you were sitting beside me.  I'm completely alone.  It could not have been some guy passing by.  No one is here but me.   And you.  

It's not about dating.  It's not about guys.   You are here with me.  You are always with me.   You keep reminding me of that.  And God, how I needed reminding of that today.  Thank you.   And you are right.  I deserve better.

I often wonder what type of man you'd grow up to be.   I think now I know.

Thank you, Shane.  I love you, more than life itself, until the last breath in my body and then beyond.  Happy Birthday, my son.   You still make me proud.    You have always been, and continue to be, the love of my life.



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="">