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, August 4, 2009

Shane and CHERUBS and Blogging

I debated whether or not to start this blog. There are many reasons why...

1. Shane has a memorial web site already - Shane's Street.

2. I run CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support Congenital Diaphragmatic Hernia (CDH) is a rare birth defect that occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth. CDH occurs in 1 in every 2500 babies. 50% do not survive. The cause is not known. CHERUBS is the world's first and largest CDH organization, leading the way in CDH research, support and awareness since 1995.

3. Shane died 10 years ago. I'm not exactly in the beginning stages of grief anymore. I'm at peace with his life and death, I've learned to cope with it. I no longer struggle every day (10 years ago I never would have believed that!). So I don't feel the need to talk about grief or his death as much as I did say 8 or 9 years ago.

4. Will a blog about my son be more material for some to judge and criticize me and CHERUBS? There is chance something I create in memory of my son, with every positive goal I have, that may have nothing to do with CHERUBS... could be twisted by negative people. I don't need drama. CHERUBS doesn't need drama. But unfortunately, there are mean people in the world. And especially on the internet.

5. I don't want Shane's life and site and blog to be confused with CHERUBS. They are 2 different things completely. CHERUBS isn't about Shane and Shane wasn't the reason behind CHERUBS. CHERUBS is a non-profit organization created in 1995 by 2 CDH moms. It was named for all the children who do not survive CDH. It was started by more than 1 CDH mom, it's board is full of CDH parents (and 1 grandparent) and CDH doctors and nurses. CHERUBS is for ALL CDH families. My son is no better or worse than any other child who was born with CDH - they are all equal. He wasn't the inspiration behind CHERUBS, it wasn't named for him, I wouldn't dare ask other CDH parents to volunteer for an organization that put my child above theirs. Yes, I volunteer about 40 hours a week for CHERUBS but I am not CHERUBS. I am one of many volunteers. I am just one of 100o's of members. I just happen to do all the office work and paperwork. I founded CHERUBS and I run CHERUBS and I happen to be Shane's mom. It's that simple and that complex. :)

6. Shane's life is not defined by CDH and CHERUBS. When Shane died I was insistent that he not be remembered as just a "CDH child". Yes, he had CDH, but he was also an amazing kid! He had a ton of other health issues and he wasn't labeled as "the deaf kid" or the "kid with the trach" or the kid "who was homeschooled". He was a kid who loved, loved, LOVED Sesame Street. He loved riding in cars and playing with matchbox cars. He loved books. He loved petting the cat. He couldn't talk but he could sign and he and I had a special bond that let me know what he was trying to say when the rest of the world had no clue what he wanted or how he felt. He loved dragging toys out of his room to the living room and playing on the floor all day. He loved going outside, even though he couldn't stand to have grass or dirt or sand touch his feet. He laughed. A lot. He had the most contagious laugh. He had a beautiful smile that made anyone who saw it smile too. He carried around a stuffed Precious Moments doll named "baby", everywhere he went for his whole life. He had a huge heart and would hand anyone any of his toys. He was a walking miracle who beat so many odds so many times that no doctors could ever explain. He gave the best hugs in the world. He loved blowing raspberries. Loudly. All the time. He went to deaf pre-school. He was home-schooled for kindergarten. He was a happy kid. He was loved, so very, very loved.

7. My life is more than just CDH and Shane and CHERUBS. My life is full and happy and I am so blessed with so much more! I am a wife, a mom to 2 more boys, I run a company, I have too many hobbies, I am part of a huge families, I have great friends. I have a very sarcastic sense of humor. I am a Christian, proudly but I do not pretend to be perfect. I am a newlywed and my husband truly is my soul mate and I know how blessed I am to have found him! I have the best boys in the world, and even though I didn't give birth to them they are as deep in my heart as Shane is. My husband and boys are the funniest people I know. I love to scrapbook and take photographs. I love to travel. I had a 4.0 college GPA and I've won 100's of graphic awards, including one from the LA Times - and I'm a nerd and proud of it. I have absolutely no fashion sense at all and don't care. I've met several famous people but I think name-dropping is beyond tacky. I am opinionated but not judgmental. I always stand up for what's right, even though it's rarely convenient or easy to do so. I love watching my boys play baseball. I hate heights but love roller coasters. I have a very spoiled Maltese puppy that I baby. I've run my own web design company for 10 years. I hate sales. We want more kids someday soon. I am a horrible cook. I love our new house. I love puzzles. Compliments make me very, very uncomfortable. I brag about my work, my boys, my husband but you'll probably never hear me brag about myself in real life. Learning to ice skate is on my to-do list. I love to sing but I am horrible at it! I will read medical journal articles like they are newspapers. I pray for everyone, even people who don't like me. I am shy until I get to know people. I love good quotes. I keep a small circle of close friends but I keep them for life. Yes, I am a grieving mom - but that is not ALL that I am.

8. My other 2 boys, my 14-yr-old twin stepsons - who will be known here as B & G - never met Shane. They can read his story and look at his photos but there is so much more I want them to know about their big brother. Shane is a part of our family. His photos are hanging on the wall beside theirs. They volunteer for CHERUBS in his memory. I want them to know him. I'm hoping the stories that I post here will help them do that.

9. CDH Awareness is always a good thing, even though I won't post a whole lot about CDH.

10. Grief never ends. You never stop missing people you lose. Losing a child is the absolute worst thing anyone can go through. Not everyone survives it in one piece. I have. Maybe my journey will help others.

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