Monday, December 31, 2012

Happy New Year!

Before Tommy,  I was content to let the world blow me around from job to job. I had no goals, no dreams. I really didn't need them. When Tommy was born, everything about me changed. I went from one fleeting job to another to being a full time caregiver to a very happy, very fragile little boy.

After he died, I felt like I had lost my place in the world. I no longer had an identity and I no longer knew how to make a difference. I put my head down and I grieved. I grieved not only for my child, but for myself. I was SOMEBODY when I was taking care of him. I was Tommy's Mommy and I was good at what I did. I enjoyed being his caregiver. Not just his mom. There was more to it. Some people may find it difficult and tedious to draw up meds, give breathing treatments, change trachs and g-tubes, and shuttle off to a bazillion doctor's appointments. I found it amazing. I didn't like having a sick child. My heart hurt for him and wanted him to be whole, but caring for him made ME whole.

A few months ago, I was working my current job. I'm a cashier at a convenience store. We do a little bit of everything including cook. As I stood in the kitchen alone with thirty pounds of bacon to be fried, I began to cry. There had to be more to life than waiting on customers and frying bacon for near-minimum wage. I was very depressed over the entire situation. I had to do some serious soul searching. Little by little, it came to me what I had to do. I needed an education, but I had no idea where to start or even what I wanted to do with the rest of my life.

I began researching what was available in my area and trying to decide what felt right for me. Once I figured that out, I applied to college and was accepted for the Spring 2013 semester. I've made arrangements with my job to only work weekends and for the next two years, I'm a full time student. When I graduate, I will have a degree as..........

A respiratory therapist. Not only that, I have bigger goals. After I have my degree, my plan is to work for a Children's hospital and train as a NPRT, Neonatal pediatric respiratory therapist. I'm so excited to be doing this with my life!

Only 14 more days until my first class. No turning back. No regrets. I will always be Tommy's Mommy, but now I get to be an RT to not only him, but to hundreds of other kids. Everybody deserves to breathe, and those with a complicated airway or other breathing issues deserve to have someone willing to do what it takes to help them without it being scary, painful or hard. When Tommy needed an RT, sometimes the one that came wasn't willing to make a difference, as a matter of fact, one was so careless she could have done real damage had I not been close by. I have the opportunity, the responsibility to be better.

Tuesday, September 25, 2012

Happy Birthday!

Dear Tommy,

You would be 6 today. I can barely figure out where the time has gone. I still miss you with all of my heart. We watch your videos often and your pictures are still on our walls, smiling down on us. The tears don't fall as frequently as they used to, but some days are worse than others and I can't stop them from flowing.

You taught me so much, sweet boy. How to laugh, how to enjoy the moment and how to live each moment like it was the last. I cherish your memory. I love you.

This is from your first and only birthday. I'm so glad we had a party, took so many pictures and that you even tasted your cake. It was a beautiful, magical day that I will never forget.

I can't wait until the day I see your beautiful smiling face and shining blue eyes again.


Monday, July 30, 2012


I've been keeping a little secret. We went to Charleston, SC last week. I had a ton of emotions to deal with and it wasn't easy. I went with my Mother in Law. Since she was the driver and I was technically riding on the coat tails of her vacation, I thought it would be best to not make plans. Plus, I was a wreck. It really was a good vacation, but I was not prepared for the mood swings and the emotions that would plague my trip. Our first day there, I had an emotional breakdown. It was so bad, I was nearly in tears on a bench at the City Market with my mother in law's arm around me. I had a lot of peace to make with my former home. I didn't think a trip to the Market would set me off, but it did. Lots of things did. Some I showed, some I didn't. Here's a few highlights from our trip.

The Battery. I love this park. Right next to the Charleston harbor and the old part of the city. This is looking down towards the pier.

The pineapple fountain. It felt so good to put my feet in after walking. See that small creature right behind me in blue? That's Brandon, about 30 seconds before splashing my entire backside. Now that was a shocking surprise!

Tugboat pulling a barge in the harbor. It was huge. I don't have a way to show perspective, but trust me. It was a big boat!

Day two..the beach!

This also happened to be the site of another emotional breakdown. It started out a good day, but the memories kept flooding back. The last time I was on this beach, Tommy was in the hospital, just a few days from dying. I had needed a little down time from all the stress, so we had gone to the beach. I guess I've never gotten over the guilt of taking a time out instead of spending those few hours with my boy. It wouldn't have changed anything, and at the time, I really did need a day outside the hospital, but the guilt...Not even the ocean could wash it away and I spend the day alternating between tears and sleeping wrapped in a beach towel, listening to the ocean.

We went to the aquarium for free! Okay, it cost us our time. We signed up to hear about a timeshare and our reward was free aquarium tickets. It's three hours of our life we won't get back, but I loved every moment of the aquarium. I even got flirty with a frog.

A. W. Shucks... Best dinner in Charleston. I'm still dreaming about the craw fish mashed potatoes.

And now we get to the hardest part of the trip. I went back to Children's Hospital. I will admit, it took me two trips to get the courage to walk inside.

Once I was through the doors, there was no turning back. I walked with no purpose to the elevators and pushed the button. Three seconds later, I was on the 7th floor. He died here. I walked passed the ward, 7A, where he died, barely glancing through the glass. It was so painful. I fought the tears. I took Brandon with me, because he asked, and because I really needed a hand to hold. We stopped and looked into the Atrium (Children's play room). I could see the window to the room where he drew his last breath. I was in a dreamlike state. Not here nor there. A moment in time that hung there like fog. Moving down the hall, I saw the Ronald McDonald room. I spent many days sleeping there, reading and foraging for snacks.

As we got closer to the end of the hall, nearing the ward where he spent most of his life, I began to shake. On the wall, never there before, was a clown fish. Nemo.

Here I was, 7C.

I lifted the phone on the wall and requested to see a nurse in the hallway, since I didn't know anyone on the floor and I didn't want to intrude. The doors opened and I saw the room where he spent so much time about a month before he died. All of the air left my lungs. I tried to explain to the nurse who I was and began to cry. I had a hunch already, and she confirmed that the cardiac step down ward had been moved one floor up. It didn't matter. I could see him throwing his toys into the hallway for Ms. Mary to pick up and come play with him. He couldn't talk, yell or cry, but he had great aim and a strong arm. The nurse comforted me and I was on my way one floor up to see if anyone from our stay remembered us.

I stood in the hall outside 8D, the new cardiac step down ward for a few minutes, not sure what to do or say. Finally, a family came out the door and I asked if a nurse was available. The nurse knew me! Hugged me! I looked over her shoulder. Guess what I see.

Yep, another clown fish. She invited us onto the floor and asked if I remembered Tasha. As soon as I came around the corner, I almost fell through the floor. The very nurse that had come from 7C to 7A to be with us the night Tommy died was sitting 3 feet from me. Who do you think arranged that??? I could have not asked for a better way to have closure than to speak to the very person that witnessed everything with me. We chatted and hugged. Brandon and I went downstairs, but I wasn't quite ready to leave. One last picture before I was ready to walk out the doors of MUSC Children's hospital forever. I felt like I had come back and retrieved a part of my heart and felt a little bit more whole.

We went back to the hotel room and turned on the tv. "Finding Nemo" was playing. My heart sang as we celebrated Tommy's memory and me even more so in the knowledge I was finally free and at peace with myself, the memories, the trauma I went through that night losing him. My heart swelled. I miss him a little less each day because I have learned to make him a part of me. The less I miss him, the more I know he's closer to me than ever. Leaving the hospital was soul cleansing.

Our trip was over. Only a couple more stops to make. We went to see the Hunley. After hearing so much history over the past few days, seeing it in person was just amazing. This is Brandon peeking into a replica. No photography is allowed of the real thing.

Lunch was a walk down memory lane. Andolini's!!!

The pizzas are SO big. 19 inches! Two slices and I was done in. I wish they had pizza like this around here. I would eat it every chance I got.

It was then time to get back on the road. We stopped in Tennessee for the night and enjoyed their pool. I even got to lounge in their hot tub for awhile.

Matthew had his birthday on the road. Who can say they've had a birthday party at a rest stop?

All said and done, it was an emotional, but much needed trip. I go back to work in the morning. I have lots of pictures and a ton of memories. And a tan!

Sunday, July 8, 2012

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.

Friday, March 2, 2012

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.

Thursday, February 9, 2012

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.

Diagram of Tommy's Heart Defects

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