Monday, August 30, 2010


I'm still trying to come to terms with how I feel about God. I don't mean to be disrespectful or bash a religion. These are MY personal beliefs. Before Tommy, I prayed, even went to church when I could. After he was born, it became difficult to pray.

I felt like anything I prayed for would question or disrespect God. How could I ask for Tommy to be made whole when God had made him this way? How could I pray for healing when I knew it wouldn't happen? Tommy would never wake up one day without heart defects just because I prayed. Would he?

If Tommy went into surgery, I didn't know what to pray for. Asking God to keep him safe was like saying He wouldn't keep him safe if I hadn't asked. Then again, what if it was God's will to take Tommy? It wasn't my choice. He wasn't mine, I just had the honor of being his Earthly mother.

I still question my relationship with God. I believe in Him. I know I am loved and one day I will go to Heaven and be with my sweet Tommy again. I guess it's not God I have an issue with, it's Prayer. How do you ask God, all knowing, omnipotent God for something? How could I ask for something so selfish as keeping Tommy here on Earth with me, no matter how much it hurts me? How do I ask for Him to comfort me when I know Tommy is in Heaven, so why do I still grieve him?

I feel like I am a child and I don't have the right to ask for anything. I was told yesterday when I was having financial problems to go to church and talk to God. All I could think was "God won't pay my bills, that's why I'm well enough to work." How do I ask the God that took my son from me for money? I know... He didn't take him.... I have a love/hate relationship with that thought.

I tell myself over and over that it was God's will, that God is never wrong...but I find myself thinking things like "Why should I ask God for anything when he took the one thing from me that meant everything?" or "God didn't save my son, so why should I have any faith that He is going to provide me with anything?"

I'm thinking I have more issues than I thought I did when I started writing this.

Friday, August 20, 2010

The Invisible Scars

The day I dread more than any other day is here. I've been up since 7 and I've found tears in my eyes about 3 times. It's not going to be an easy day.

Last night, I contemplated what I wanted to write about today. It didn't take long to know what I wanted to share. I realized last night that I have a scar, except it can't be seen. I've heard people say that scars have a story, or scars are the road map that shows where you've been, but since my scar can't be seen, I have to tell you about it.

My scar sits in the middle of my chest, right above my heart. Or at least where my heart used to be. My heart was violently ripped from my body and given to my son when he died. He took it to Heaven with him. In its place, I was given a broken heart to use until I can meet him in Heaven and he can return my heart to me. I know he has my heart because I can feel him holding it. Every now and then, I feel flutters as he gives it a hug and thinks of me.

I wish my scar would show up on my skin so people could see that I've been cut open. How are they supposed to know how much I hurt if they can't see the scar? How are they supposed to know that something so precious was taken from me? Something I love so much and can't live without? How are people supposed to comfort my pain when only I know that I hurt?

It hurts every day, but today, it hurts worse. Like a birthday, anniversary or holiday, we remember important days. They are milestones on our journey. This day is an Angelversary. The day my son died.



My arms used to ache to hold him. Now, my heart hurts as I try to remember the smell of his head, the sound of his gurgley giggles, and the way he breathed when he slept. I can spend hours staring out the window at nothing just thinking about him. When I go to sleep at night, I don't dream about him anymore. That hurts. I can go for weeks without crying. Not months. Just weeks.

I'm keeping myself busy. I'm living life to the fullest. But like a cup that has a leak, no matter how much you fill it up, eventually it's going to be empty whether you like it or not. Since getting a new cup isn't an option and this is the one I'm stuck with, I can try to patch it up and pray it holds or I can just keep trying to fill it faster than it empties. My broken heart leaks. It leaks pain, it leaks tears and sorrow. Patch with a joke. Patch with a happy moment... Patch all you like, the scar is still there.

Whether you can see it or not.

Wednesday, August 18, 2010

My Birthday

For an entire year, I hated August 17th. In 2008, I had my birthday sitting in a hospital room, crying because my son was sick and nobody could tell me why. No cake, no love, just me in a hospital room feeling sorry for myself and pissed off at the world. In three days, my son would be dead and I would hate the world even more than I did that day. I swore I would never celebrate my birthday again.

Last year, I chose to work on my birthday. I got a few birthday wishes, but ended up eating cupcakes at midnight because I was so depressed over my birthday and the impending anniversary of my son's death. I waited all day for my hubby to tell me happy birthday and do something nice for me. He forgot. Really. Bad. Day.

This year turned out to be quite the opposite. My boss told me to take the day off, and then while I was at work Monday night, he called to say Happy Birthday because he wanted to be the first. He doesn't know about the rough time I had last year, so for my birthday to start in such a caring way brought me to tears. I went to the cooler (no cameras) and bawled like a baby. I was an emotional wreck for the rest of the evening, but when I woke up on the day of my birthday, I felt wonderful.

I went out with hubby, who not only remembered to tell me happy birthday, but also took me out to lunch! We came home and worked on rearranging furniture in two different spaces. One for him, one for me. He now has a "man cave" and I have a living room again! He can play his xbox on the big screen in the dark and I can open the shades and let the sun stream in while I listen to my iPod on the awesome house system he hooked up for me. The living room still needs work. I need to paint one wall and find a way to hide all of the power cords dangling from everywhere, but I have room to exercise now and I know where all of MY things are located!

After working hard on the living room, I made a steak dinner for hubby and me (the kids were content with corndogs and mashed potatoes). After the kids went to bed, I attempted to dye my hair with pink highlights. It's not as dramatic as I had hoped. I have pink roots and a little pink on the underside of my hair. I color treat it black, and the kit I used was for black hair, just not color treated black hair. I'm going to have to do a whole bleaching and coloring process. Not sure I'm up to doing it myself the next time around.

Finally, after I cleaned up the pink that was everywhere but in my hair, I treated myself to chocolate cake, and through it all, I kept getting Facebook updates of another and another and another birthday wish. I lost count, but I did take a nap early in the afternoon and woke up to 54 text alerts from Facebook.. and that was only at 2 pm. I got constant updates until well after midnight. I can safely say this was the the best birthday that I can remember.

In three more days, it will still be Tommy's Angelversary. I'm okay with that. I will get sad again as it approaches. How could I not? But I'm at least able to celebrate myself a little and know my son would approve of my happiness.

Monday, August 16, 2010

It Creeps Up On You

Standing in the cooler at work last night, I felt the rush of a memory. Maybe it was a sound, but I could feel the hospital. Earlier that day, as I waited on a customer, something in the air smelled JUST like Tommy for just a second. When we are low on fuel, an alarm sounds in the back room. It sounds exactly like the telemetry monitors. It seems like I can't get away from it. I'm constantly bombarded with sights, sounds and smells that trigger memories.

There are times when I look at pictures or watch videos. Maybe I clutch one of his blankets or an outfit and try to remember. Those are the times when he feels the most far away from me. The harder I try to remember what he smelled like or what his voice sounded like, the more distant the memories become. I have to concentrate on the picture for a second to recall the feelings.

The very same day, I can go outside and see a butterfly or a flower and without even trying, I can FEEL him all around me. I can't look into a small child's eyes without wondering first of all if he "knows" me because Tommy told him about me and secondly I wonder when Tommy would have walked and how tall he would be now. I miss that smile.

I'm torn between letting go and just letting the memories happen and holding onto them tightly so I never forget.

I think what I miss the most is how he smelled. My favorite thing in the world was the way the top of his head smelled. I have read that parents bond with their children by smell, specifically, the top of the head. I have the hospital gown he was wearing when he died, but it stopped smelling like him a long time ago despite putting it in a ziplock bag. While he was in the hospital, I kept myself busy doing laundry. I never knew he would never come home again and that I was washing away all of his precious smell. Every stitch he owned and every sheet and blanket were washed and put away, waiting for his return that never happened. I even washed Wub the night before he died because it was looking so cruddy. Regrets.

I never knew memories would be such a challenge to hold on to.

Sunday, August 15, 2010

This Sums It All Up

July is when he was taken from my home. August is when he died. September would have been his birthday.

Wake Me Up When September Ends....

Friday, August 13, 2010


I'm asked constantly why I don't move closer to work. It's complicated, but it comes down to my kids. They've been through enough. Having a stable home is important. So is going to the same school for more than a year in a row. Jobs can come and go. My home is my home. Tommy is buried nearby. It's peaceful.

Right before Tommy was scheduled for his first heart cath for what we thought would prepare us for his Glenn, we jumped many hurdles to bring him to Kentucky to meet our families for the first time. While we were here, Rob and I took a walk around his grandparent's property. Looking at the beauty and isolation, I was smitten. I felt at home even though I had never lived here. As I looked around at how far we were from just a grocery store, I realized that if there were ever an emergency with Tommy, we could never get him to a hospital in time. My dream of living out in the country drifted away. As long as Tommy had medical issues, we had to live close to a facility that could treat him quickly.

When Tommy passed away, again, I found myself standing on his grandparent's property. I was filled with such peace. The beauty all around me reminded me of Tommy. Every time the breeze touched my cheek, I felt his kiss. It was quiet, open, serene. Everything my life had not been up until that point.

Then we walked into the trailer that would become our home. Although a bit smaller, it was nearly identical to the one where we lived in Charleston. It was calming and haunting all at the same time. I can't explain it. Living here makes me feel wrapped in Tommy's love. I often visualize him running through the fields, laughing and playing without a care in the world. I think he picked this place for me to live so that I could heal after he died. I never want to leave.

Every day, I wake up and take the kids to the bus. When I turn around and start to walk home, every single day, it still takes my breath away. My lungs fill with the country air, the wet grass sticking to my feet. The sound of the cows next door and across the street. The sun streaming over the trees. If I could see Heaven, I'm sure it looks exactly like this.

Monday, August 9, 2010

Celebrating the Moment

I still find it strange how some things change over the course of a year while others stay the same. This time last year, I was sick with anticipation about how I would feel on Tommy's angelversary. This year is so different. I have so many wonderful things planned for that week. I feel my life-force returning to me. Yes, I still miss him. Yes, I still cry for him and dream about him at night. Some days I feel like I'm just ready to get off this ride. That part will never go away, but the part that lets me be happy has slowly returned.

Tommy's life was a study in celebrating the moment. Every little thing was new, exciting and sometimes scary. We had very low times, but the good times were amazing. Little things like trying to catch a bubble, laughing at his brother, or chewing on his oxygen tubing on purpose just to see that look on my face. He was all boy.

After he was gone, life took on a new meaning for me. Nothing mattered anymore. The long term was gone and only the moment mattered. I'm slowly letting myself see that there are things to look forward to in my future, but for the most part, I am happy with living moment to moment.

I love to wake up and hear a thunderstorm. I love to smell the honeysuckle in my yard. I never plan menus. I cook what I'm in the mood for at the time. Life is FULL of wonderful moments! Never forget that each moment is precious. Make every hug count. Never be afraid to say how you really feel. Don't be afraid to show emotions that the rest of the world might frown upon.

The next two weeks is going to chock-full of MOMENTS as we lead up to Tommy's Angelversary. I'm going to celebrate my birthday..I'm going to go see (hopefully) Joan Jett at the State Fair. I'm going to put pink highlights in my hair. I'm going to take the time off from work to be with family and friends to watch Kenny Wallace race his car in Bristol, TN with my sweet baby's name on the hood (along with many others). I'm going to blow lots and lots of bubbles and I'm probably going to cry.

I will hug my kids a million times. I will pet my cats. I will dream. Moments, moments, moments. Cherish every single one.

Diagram of Tommy's Heart Defects

Diagram of Tommy's Heart Defects
Double Inlet Left Ventricle with Transpostion of the Great Arteries