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Celebrating Tommy's Life, Because We Can

Posted Aug 15 2010 4:50am
Being the mom of a medically fragile child, you really try not to take too much for granted. In the back of your mind there is always that small, tiny voice that is warning you 'something could go wrong.' And most days you do your best to ignore it.

Some days you wish you hadn't.

Then, there are the days when unexpectedly everything changes. No warning. No icky feeling. No way to stop it.

Two years ago this week Austin and I were packing our bags to move from Texas to California. On August 19th, we boarded a plane to change our lives. It would be a few days before I got this devastating news.

On August 20th, in a hospital 3000 miles away, Tommy Dereksen was watching Finding Nemo. And then, he wasn't.

My own heart nearly stopped. Shocked. Horrified. Scared.

This week is Tommy's 2nd Angelversary . I have invited his mom, Rene, to share their story so that YOU all can join us in celebrating Tommy's life.


This is my very first time guest blogging and I am honored and excited! Let me start by introducing myself. My name is Rene Dereksen and my blog is Musings Of A Heart Family . My blog centers around what life is like after the death of a medically fragile child.

We lost Tommy to complications of Congenital Heart Defects. He was almost 23 months old.

Our lives centered around his care. He was g-tube fed, breathed by trach, was oxygen dependant and developmentally delayed. Losing him was not a complete surprise. Losing him on THAT DAY was.

Tommy had been “sick” his entire life, but that never got him down. He didn’t know life any differently. He was full of laughter, smiles and wicked sarcasm.

There’s nothing funnier than seeing a non verbal child sign to his therapist to leave when she walks in the door because he’s not in the mood to play her games. He used to throw her therapeutic crayons, blocks and lacing toys under the couch, point to the door, and turn his back on her unless she brought out the giant toy gumball machine with the lights and music.

He could color, stack and lace. He just didn’t want to do it for her. I used to video tape him to prove he could do certain things to prove I wasn’t making it all up.

Having a stubborn child hooked up to oxygen to stay alive proved to be quite a challenge as well. He loved to take off his trach mask and chew on it. I finally ended up finding a strap that would hold it securely and giving him another one to chew.

Oxygen tubing and feeding tubing were also great chew toys for him. Imagine my surprise to see him with formula dripping out of his mouth and a big grin on his face because he’d chewed through the tubing while he was being fed.

Tommy was silly! He loved to dance to “Peanut Butter Jelly Time” and watch “Signing Time” videos. His favorite movie in the whole world was “Finding Nemo”. He signed “fish” and pointed to the tv over and over again.

He blew kisses with abandon and shook with glee if we brought out the bubbles. He loved his Wubbanub and wouldn’t sleep without it, but if we tried to give it to him and he didn’t think he was tired, he threw it behind the bed.

At Christmastime, he wiggled across the room until he was under the tree and kicked it to hear the bells jingle. When he got caught, he would just give a wicked little smile and purposely kick to see what I would do.

Tommy was perfect, despite the imperfections of his anatomy.

And then he was gone.

He had been admitted for a failed decannulation (removal of his trach). One minute he was watching “Finding Nemo” and blowing me kisses. Then he was in respiratory distress and a crash cart was in his room trying to save his life.

For 45 minutes, CPR was done and medications were pumped into his dying body to no avail. I had to tell my tiny flirt goodbye.

I know you’re crying. I’m sorry. It’s my reality.

Every single day, 9 children will die from their heart defects. One in 85 babies are born with a heart defect. CHD will take the lives of more children in their first year of life than all forms of childhood cancer combined.

He has a lot of friends in Heaven.

Since Tommy's death, I've been blogging about my grief and in doing so, I've met many amazing people. It doesn't matter how or when your child died, you're forever changed. Tommy was the best example of strength that I have ever met.

To be born missing part of a vital organ and keep on going like nothing was wrong. Now I’m missing a vital organ as well. Tommy took my heart to Heaven with him. I’m going to have to live without it until I’m with him again.

August 20th will be two years without my sweet boy. I want the world to celebrate his life with me. Watch “Finding Nemo” or stand in your yard and blow bubbles.

Read our blog and learn about his life and about congenital heart defects. Then, at 7:30 EST, turn on ESPN and watch Kenny Wallace #28 race the Hope 4 Tiny Hearts car to help raise awareness for CHD. While you’re doing that, watch for Tommy’s name on the car.

Thank you, Janis for the opportunity. It’s been a pleasure! (All mine Rene, all mine.)

Thanks for peeking,

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