Thursday, June 24, 2010

Deja Vu


That's how I feel today.

Yesterday, I was cleaning house and was vacuuming the hallway. Let me explain that the mobile home we live in now is set up nearly identical to the one we lived in while in Charleston. This one is smaller and has a couple different features, but walking in the front door feels exactly the same. I don't know if this helps me or makes me feel worse some days.

As I was vacuuming, I was walking backwards and stepped around the oxygen concentrator.

Except, it wasn't there.

I do this a lot. My head swims for a second as I look for things that should be there that aren't. I've lived here for almost two years now. I should know where I am, right? The carpet and walls are different colors. What would have been Tommy's old room is now the boy's room. It looks nothing like Charleston in there, and yet, I find myself not able to comfortably walk in. It's like walking around in a dream state, except I'm awake and I can't find myself.

Its not exactly depressing moments when these things happen. More of a deja vu kind of moment. For a second I was back there again, trying to clean around that noisy concentrator. It was a pain to have medical equipment in my house. It was loud, cumbersome, and a constant reminder that my son needed machines to live.

And I miss them.

I cleaned my living room yesterday. It used to be a challenge because I was always trying to figure out where to stash 15 tanks of oxygen. I can see all of my floor. No quilts for Tommy to play with his toys. No toys for that matter. We used to live in a hospital. Now, it's just a house. A house that is too quiet at night.

Because there are no oxygen concentrators running to remind me my son is alive.

Thursday, June 17, 2010

Another Countdown

Not long ago, I posted about the recurring dream I had been having about trying to sort through our things in Charleston. Last week, I got a phone call. Someone I love drove to the place where our old mobile home used to be. It was no longer there. He told me I could stop having my dreams now because there was nothing to go back to and I could be at peace now. What a wonderful, loving thing to do for me!

Since then, my life has been upside down. I've had two dreams of Tommy, but I can't remember them. I remember that they were sad dreams, so it's probably a good thing I can't remember them right now. I have something weighing heavily on my mind that I know is affecting my dreams.

I've reached another milestone. One month left. On July 16th, Tommy will have been gone from this Earth longer than he lived. This is a very sad time for me. It will mean I have lived longer without my sweet boy than time I was able to spend with him. I feel myself slipping farther away from him. I find myself constantly looking at pictures, and reading old stories about him, trying to keep his memory fresh in my mind. I worry that someday I will be the only one who knew him and when I am gone, he will be too.

He was the bravest, toughest, most stubborn, happiest kid I have ever met. He could charm the socks off of any nurse in the hospital and have every doctor he met scratching their head in amazement. Every breath he took and every beat of his heart was a true miracle. I remember hearing doctors tell me that I was doing an amazing job with him. He gained weight, he looked good, I stayed on top of everything, he was doing remarkable, blah, blah, blah... I'm no saint, I was just being a mom. I'm sure subconsciously I was working harder because he did require more than a typical child, but it didn't matter. My child needed me and I was there for him. End of story. Parents tell me they just don't know how I did it, or they could never do all that I did for Tommy. Sure they could, had they been in my shoes.

I would give up every breath in my body to do it all again. Every surgery, every procedure, every medicine, every trip to the ER. Every little thing we did for him gave us another moment of life with Tommy. I cherish the moment he entered this world through my body to the moment he looked at me for the last time and took his last breath and every moment in between. I stare in amazement at a picture of him sleeping on his tummy. It took a year of therapy and hard work to get to that moment, but he did it! Most 18 month old kids are learning to walk, talk and explore. Tommy was learning to sit up all by himself.

I wish I could have seen the day he took a step.

30 more days left. 30 more days until I reach another milestone I never wanted to see. It's just another day, right? Another day just like today that I am aching to hear that laugh and hold him in my arms.

Friday, June 11, 2010

Found Memories

Tonight, I was cleaning out a suitcase. I stumbled across some really sentimental things. I found the last trach Tommy ever wore. It was the one he took his last breath with.

Medical ID bracelet.

ID bracelet from when he was admitted when he had his tonsillectomy. It says 7/16/2008.

Just a month before he was gone.

Going through baby clothes. Trying to bring myself to find a way to make a quilt out of them. I'm going to work on it with hubby's aunt.

Trying to move through this.

Thursday, June 10, 2010

Searching Dreams

This evening, I fell asleep on the couch. I had a dream that I can't shake. I've had similar dreams in the past, but this time, it was off kilter. It bothered me.

When we left Charleston, we put everything in storage before we moved. There were a few things we decided not to take and a couple things we forgot. Like our kitchen table. It was an antique that I had picked out and bought earlier that year. I just loved it! However, we had just buried our son, lost all of our income and were losing our home. To say my head wasn't screwed on straight is an understatement. We had set several things on top of it that we were going to throw away and somehow, the table just managed to get left behind. We didn't realize it until we were out of the state and there was no going back. It was the only thing we left that I gave a second thought over. There was nothing else sentimental, worth value or just something I wanted to keep.

For the past year, I've been having a recurring dream that we end up in Charleston in the middle of the night and find that our trailer is still there with ALL of our things left inside. We no longer live there and we are not supposed to go inside because it doesn't belong to us anymore, but we break in anyway. I frantically start going through things and we pack up a truck all night long. We take what we can and always have to flee because we are about to get caught.

As the months progress, in my dreams, we've gone back several times. Each time, I'm looking in different rooms and packing different things. Most of the things in the dream I've never even owned in my real life, but in the dream, they're mine and it's important things. Every dream has just been me and Rob, sometimes with sometimes without Matthew and Brandon. It doesn't seem Tommy ever existed. I don't even remember him in my dreams. Like he was never there.

In reality, when we left the house for the last time, we made a point to make sure we took part of Tommy with us. We wrapped up a couple of his favorite toys in one of his blankets and said a prayer. We told Tommy it was time to go with us. Then we put those things in a special box that I carried with me when we traveled, not left in storage. A few months later, my husband went to Charleston without me and brought back our things. Nothing was missing except that silly table.

Tonight when I had my dream, it was the same. We end up in Charleston. Me, Rob, Matthew and Brandon. We set to work packing, but instead of finding all of these things that we've left behind, I walk in to find we've already been there before and that this is a second trip for us. There won't be much we haven't already taken. Instead, I find stacks of newspapers in all of the rooms. Like I've saved several copies of the same paper. I get a feeling in my dream that every paper has an article about Tommy. I dream that he has a scar on the side of his face from some sort of burn, and that the papers talk about him. I feel he is gone and I cannot go back ever again. I leave all of the papers in the house and take a few of my clothes. That's it. There's no truck full of boxes to haul away this time. Just memories. Sad, sad memories.

I have no idea what the dream means. It was upsetting to see the scar on my sweet baby's face and I have no idea why my mind would see that. I woke up very sad and wondering what it all meant. Closure? Healing? I don't know. I can't go back to that house. It doesn't exist anymore. It was a mobile home on a lot that has probably been moved or resold to someone else. I don't know what I'm searching for. I always hoped my dreams would guide me to what I'm looking for in my life, but this time, I have no clue. I'm lost.

Tuesday, June 8, 2010


I just changed my blog's web address to Sorry for any confusion this may cause anyone. I should have made an announcement first, but didn't realize it wouldn't carry over once I changed it.

Wednesday, June 2, 2010

Got To Get It Off My Chest

I was robbed. Cheated. I had a beautiful son and now he's gone. Why didn't anyone listen to me? I was his mother! I knew something was wrong. I've told Tommy's story before, but this particular circumstance will not stop nagging me. Yes, it's haunting to have seen him die in front of me, but worse was sitting in the hospital over a weekend and being ignored.

The doctors rounded and practically patted me on the head telling me all was well. But they weren't his doctors. I guess everyone thought "Hey, it's Tommy. He bounces right back. He's got his own way of doing things, but he's always okay." I kept believing people when I was told he had overworked himself learning to breathe without a trach, that we'd rushed him.

My ears heard this. My head found logic in what I was told, but my heart, my mommy-gut was screaming that something wasn't right. How could a child go from being completely weaned from oxygen and having his trach removed and doing the best he'd ever been health-wise in his life, to a week later, gasping for air, needing oxygen at odd moments and sleeping nonstop for 3 days? He was literally falling asleep sitting up.

I begged for a white blood count, but I was told one had been done when he was admitted Friday night. So what was the harm in doing it again? Oh, it was the weekend. Everything comes to a halt on the weekends in a hospital. Really, it shouldn't. People don't stop being sick because it's a Saturday.

What if they'd taken me seriously that weekend? Instead of waiting until Monday, Tuesday and Wednesday to wonder what was going on and do this little test and that little test. They would have discovered what we had to learn in an autopsy.

My son was in heart failure. He had bronchopneumonia and wasn't being treated for it. Would an echo have mattered? A chest xray? How about a little stick to draw more blood and start antibiotics right away, just in case, on Friday night instead of Monday? Then when his IV blew out on Tuesday, just leaving it out because he was well enough to go home the next day anyway.......

He went "home" alright.

I was so mad and frustrated that weekend. He'd been in the hospital a month and we finally got him home, only to go back 3 days later. The happiest day of that summer and the saddest day of my life were exactly 7 days apart. I didn't take one picture of him those 5 days in the hospital. He was so, so sick and unresponsive. I knew there would be another day for pictures. I just didn't know it would be at his funeral, taking pictures of him for the very last time.

I have no closure. There are days the "what ifs" tear me apart. What if we had been on our regular floor with nurses that knew him well? What if I had taken him in to the ER Thursday night instead of Friday afternoon? What if I had a screaming temper tantrum in his room until security was called and MADE them find out why he was so sick?

I feel like the whole world dropped the ball that weekend. So many missteps. So many things that could have been done differently. I was so sick to my stomach. My mommy-gut knew things weren't right.

I was told he was depressed. They'd send in a Child Life Specialist. This from the cardiologist on call that weekend. I blame her. Never liked her, now I have a reason to despise her. I don't think she "killed" Tommy, but she sure didn't do a whole lot to save his life either.

If one small thing had been changed, would I be awake in the middle of the night because I was filling his feeding pump instead of blogging about how much I need him back? About my broken heart?

It's not healthy for me to keep all of this inside. It has to come out. I have to say how I feel or I carry it with me and eventually, it overcomes me.

The attorney we hired dropped the case after a year. No explanation, just that they were not the ones for the job and I had 3 years to pursue it if I chose. We chose not to explore that option again. There would be nothing to gain and it would not bring him back.

Deep breath.

I miss you, sweet boy. I'm sorry. I wish I had known you were dying. I wish I had taken your picture. Held you one more time. Told you I loved you again and again, even more than I did. I wish I had never washed your Wub. Never washed your clothes. I can't find your smell anymore.

Most of all, I wish you were still here.

Diagram of Tommy's Heart Defects

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