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?

Tuesday, March 30, 2010


Easter is a very special day to me. I'm a Christian and I am so eternally grateful to God for giving his Son to us and to Jesus for dying for us to erase our sins.

In a way, it helps to know that Mary understands what it's like to grieve for a son. Even God wasn't spared from the worst tragedy a human can go through.... watching your child die.

Thank you, Jesus, for giving me the chance to see my son again some day! For molding me like clay to be a better person and to continue to teach me and love me every day.

And thank you, God, for 6 and a half years with my beautiful little boy and having 6 opportunities to share Easter with him. That was such a gift, we are so blessed. Thank you.

1993 at Duke

And thank you Lord for my new family, for an incredibly supportive husband and 2 beautiful sons.  This is actually my first Easter with B & G.   This is only the second year we've been married and last year they were at their mom's.   So I'm VERY excited to be able to do the mom thing this year at Easter as it's the first time 10 years I've been able to that.  

Thank you God for all 3 of my wonderful, beautiful, amazing sons.

New CDH Song Video!

Shane is in this... it's a video featuring over 700 CDH patients and it was created to raise Congenital Diaphragmatic Hernia Awareness.   The song is by The Jammies and iTunes proceeds are being donated to CHERUBS.  It was written by a CDH dad is just beautiful!  Get your tissues ready... you'll need them watching this!!!  :)

Feel free to repost this video anywhere to raise awareness!!!

Making My Son Proud & Doing Right By CDH Babies Everywhere

My son's blog isn't a place for drama but this is too big to not share....

On Friday, our trademark lawyers forwarded us the official letter sent to the United States Patent & Trademark Office stating that the other party is going to relinquish rights to the phrase "Congenital Diaphragmatic Hernia Awareness" that they tried to trademark.

3 years of drama, over 6000 signatures, lawyers, courts, and getting blasted by a few brainwashed people for daring to stand up to this trademark.  Not to mention all the personal attacks on me, my family and my charity and standing up to that.  Is over. Finally, it's over!!!!!   We WON the fight against this trademark and never again can 1 woman try to shut down our charity, sue me, attack me or other families by threatening, suing or harrassing with that trademark.  After so many years of that... it's such a HUGE relief to have it finally over.   There is still a trademark on "Congenital Diaphragmatic Hernia Awareness Day" and God knows the drama would start up again if we tried to use that phrase... so we don't... we raise awareness every day.

It hasn't been an easy journey at all. But we did it!!!!!    1000's of CDH families have backed us, plus other charities and over 100 researchers in fighting against this trademark.   So many families are celebrating now!!!   CDH Awareness if finally FREE again and not only that, but we have set a precedent that no other cause will ever have to endure what we have!!!

There were moments when I wanted to give up.  But I didn't and I am proud of myself for that.  Every once in a while life throws tests at you... do you take the easy road and sell out and give up your integrity?  Or do you stand your ground and hold on to your compassion and honor and knowing what's right?  We held on.  We stood our ground.  We passed the moral test and did what was right.   Doing the happy dance on that one!!!!  :)

This post is written to CELEBRATE and to MOVE ON....

I was made aware of CDH on January 28, 1993... long before someone else felt the need to claim the phrase their "intellectual property".   If it would take CDH out of my life and give me my son back, she can have it.  I hope someday she finds peace and stops targeting her anger at me and hurting 1000's of others along the way.   I don't even hold any anger toward her... I forgive her.  I pray for her.  She must be in awful, horrible pain to do all this stuff.  As a fellow grieving mom... I understand the pain.  Not the lashing out at others, but I do understand the pain... and as a Christian and for my own peace of mind also... I do forgive.   And I hope we can move on.

Now hopefully we can all put this behind us and move on and focus on doing good, positive things for the CDH communities and these families.

We did it....  and I know I made my son proud.   That makes my heart swell and makes it all worth it.  :)

It's time to move forward...

The Great Human Race - March 27, 2010

My amazingly supportive hubby and I participated in the Durham "Great Human Race" this weekend, representing CHERUBS and walking in memory of Shane.

What a beautiful day to raise Congenital Diaphragmatic Hernia Awareness!   We raised money and had a lot of fun walking with the other families that really mean a lot to me.  We talked so much that we lagged behind and Craig and I are officially the LAST people to cross the finish line!  LOL   Oh well, I never planned on running the 5k.  :)

We wore shirts with Shane's ribbon on them.  We have a section on our Cafepress shop for parents to order items with the CDH Awareness Ribbon and their child's photo.  This is Shane's section -

It has a ton of great stuff on it!