Four Years Missing Tommy

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Still Angry

I'm going to vent for a minute. When a child dies, please PLEASE don't tell the parent it was meant to be or that their child is in a better place. Or it was God's will or that God wanted him/her back. A BIRTH DEFECT and a VIRUS killed my child. NOT God. No, he's not in a "better place" because he belongs in my arms. "Suffering"? My child died in less than 45 minutes and never felt a thing. The only one suffering is me, 4 years later. Don't say it will get better because it doesn't. It changes, but its never better. Don't tell me I will see him someday, because I'm selfish and greedy and human and I want him NOW. Hearing about the death of another child just brings it all to the surface, making me sick to my stomach and angry all over again. And if one more person tells me how strong I am because I wake up every day after my son died... I'm not strong, I'm merely surviving in this shell of a body. Just because you can't see my burdens and because I laugh out loud doesn't mean I'm not screaming inside every moment of every day.

A Gift to Myself

A couple of weeks ago, I participated in the heart walk for God's Special Little Hearts. I have to admit, in the weeks leading up to attending, I was sick to my stomach. The thought of touching those emotions of loss tormented me, but I got up and we went. I had no idea I would be changed that day.

It didn't hurt to walk in like I thought it would. We ate, Brandon played with the kids. My mother in law and I looked at the booths and bet on some silent auctions. It was just another day. Until it wasn't.

 I met a  brand new angel mom. It's been 3+ years since I was in her shoes and I remembered that numb, surreal feeling of my feet going one in front of the other, not knowing what I was really doing. The pavement not even feeling like it was there and my heart and lungs physically hurting from merely breathing. I felt like walking in his memory didn't make a difference, like nobody knew what was in my heart and thoughts that day. I wanted to scream at them as they pushed their strollers and walked with their kids that my arms were empty and my broken heart was stabbing me from the inside. I wanted them to feel my hurt so badly, but I could barely speak.

Seeing her finish her walk in honor of her daughter was like an out of body experience for me. All of a sudden, I wasn't the new angel mom. She was. All of a sudden, my hurt stopped and it all became hers. Like some sort of morbid torch being passed. After her family consoled her, I approached her and we talked for a bit. I wanted to let her know she wasn't alone in her feelings of loss. I also remembered not to be too forward. I do remember in those first few months the looks of pity and the repeated phrase of "I'm so sorry" followed by an awkward hug. I didn't want to be that person for her. I wanted to pass through her life with a message of understanding. I didn't even give her my information. I told her the director of the heart walk had my information if she ever wanted to talk. No pressure on her to start a friendship based on our loss, but a way to get in touch with me if she ever needs perspective from someone that's been there. She was the one to let the balloon go with our children's names this time. It's  been me for the past 3 years. I hugged her as the red balloon flew into the atmosphere and she walked away, the newest member of a club nobody ever asks to join.

In my new place in my healing process, I sat down to listen to the speaker finish with the names on the list of all the kids being honored (living and angels). Afterwards, two little girls took the stage. More like they overtook the stage. Tiny hands stole the microphone from it's place and they began to sing. They laughed into the microphone and giggled, trying their best to promote heart defect awareness. Nobody chased them off the stage or made them put down the expensive equipment. For a moment, I was shocked that parents weren't making them mind, and then it dawned on me. It's the little things that matter. It's the sound of a child's giggle in a microphone that warms our hearts. These weren't any girls, they were heart survivors. Laughing, playing, running, singing, being mischievous. I began to smile. They were not just playing, they were LIVING!

I've gone from that numb new angel mom to someone who has learned to live. Someone that appreciates living, just like these little girls were doing. I'm not saying that I'm over missing Tommy. I'm not saying I don't hurt. I always will.

I have given myself a gift. It was a long time coming, but I'm glad I waited until I felt this peace. It's part of living in the moment, never letting myself be dragged down. A constant reminder that my son is never far from me and never wants me to drown in my sorrow. Just Keep Swimming.

Yes, that's a tattoo. On the inside of my left arm. I chose red because Tommy loved it. I had it done a couple of days before the heart walk. I'm glad I did. I was able to show it to the new angel mom. Every day, when I look at it, I remember how Tommy never gave up no matter how much he must have hurt. He smiled, he fought and he LIVED. So will I.

Poor Baby

Don't say it. Don't say "oh, poor baby" about him. Don't even think it!

Born missing part of his heart, not being able to swallow, or breathe without extra oxygen. Getting stuck once a month, xrays, anesthesia, surgery, surgery, surgery... nobody said any of that was easy. But it was worth it. Every single moment was worth it.

Step back a moment and see things from his perspective. Did he know pain? Sure he did, but it was normal for him. Its like being born with blue eyes. Everyone can see your eyes except you. You are born accepting the fact you have blue eyes without seeing them. Maybe some day you need glasses. Ehh, no biggie. They just make life a little easier, right?

Tommy was born with his birth defects. He accepted them as a part of himself. He was not aware that not everybody was born as special as he was. WE feel his pain because WE are different, not him. WE understand what it feels like to have a whole heart and how to breath with our noses. For him, he was just accepting he had blue eyes.

Watch his videos, look through his pictures. You'll see nothing but smiles from a kid that thought he was just like you and me. Eventually, I would have had to break the news to him he was different. And not in a bad way. I mean in a beautiful, unique, special, out of this world way! He rose above the adversity that he didn't even know he had.

He will forever be my hero and my inspiration. Congenital heart defects ended his short, spectacular life, but nothing will ever destroy his spirit. He never was and never will be anybody's poor baby.

Giving Thanks

Thanksgiving should be a holiday with no strings attached. Should be. But I can't help but feel somber during this time of year. Tommy was alive for two Thanksgivings. Both of them in the hospital and very sick. He never got to spend this holiday at home with his family and neither did I. I ate a nice dinner provided by volunteers and had plates of leftovers brought to me both years.

I gave thanks both years that he was alive and although sick, I was thankful for just one more day.

The first Thanksgiving after his death left me with a tremendous heartache and feeling like a void would never be filled. I thought I would never be thankful again, but the feeling passed with time. I learned to enjoy my life a little more and how to ignore the constant stabbing feeling of loss for a few hours at a time. Trust me, there's not a moment that doesn't go by that I don't ache in every nerve of my body. I've just learned to hide it.

I guess the best analogy I can give for my grief is a dog on a shock collar. You know, the kind that is underground to keep them from running into the road. It gives a mild jolt if they cross the boundary. At first, they have no idea what is going on and keep getting zapped over and over until they realize just to stay away from that place. They can run around the yard happy and content, but they will always be tethered to an annoying collar that they can feel. It can feel uncomfortable at times, but it's always there, but its bearable as long as they don't cross the boundary. One day, maybe playing fetch, they absentmindedly leap over the boundary to get that incredible shock again. They knew it was there, and tried not to go there, but it was inevitable. Unavoidable.

But do you know what? I'm thankful for the pain. It means I FEEL something. I am no longer numb. I cry, I mourn. I love. I'm thankful to have been given the gift of Tommy. With all of his sickness, machines, accessories, and endless doctor's visits. For every hospital stay, every blood draw, every suture. Every moment we spent "fixing" him was one more moment he got to spend with me. One more moment I got to be his mommy.

I've mentioned before his last moments, how he was watching "Nemo", then gone, but there was an in between time. A precious, precious moment I will carry with me forever. When he started to decline, he wet his bed and the nurse came to change his sheets. I picked him up and held him against my chest, his head on my shoulder. His breath was short and labored. We turned on his oxygen and he curled his hands into my shirt as I rocked him. The nurse said he was sleeping, but really, I think in hindsight he was just too weak to open his eyes. He held me and I held him and we rocked, his heart next to mine. He was hot and sweaty, moistening the front of my shirt. I rubbed his back and whispered how much I loved him in his ear. Less than an hour later, he would be resting his head on God's shoulder instead of mine.

I got to hold my son for a few short minutes before he died, not knowing it would be my last. It was a moment of peace, and pure love. Just a mother and her son, embracing on a tough night. For that, I give thanks. 

Five

There would have been five candles on your cake today. I like to think you would have been able to blow them out. In Heaven, you are still five. You are strong, healthy, laughing, playing, running. Five years ago, I was given the greatest honor by becoming your mom.

Kindergarten.

Picking flowers.

Singing.

Hide and seek.

My heart sings at the thoughts of what you could be doing today. They are bittersweet moments in my mind.

I miss you so much. Today, you would have been five.

Three Years Ago

It's been three years. Almost. I'm a little early, but I was inspired, and I had the time to put it together. I heard this song a week ago and I cried and cried and cried. It was so appropriate for my sweet Tommy.