Thursday, May 28, 2009

Summer is Here!

Time to break out the flip flops!

Playing in the rain

Brandon before his haircut

Matthew's new haircut

Brandon's haircut

My sweet, silly boys

Brandon and Matthew, May 2009

A Better Day

Today was a better day. I got a lot done since I had the night off from work. Here's a few highlights... Rob and I went into Bardstown today to drop off paperwork for the boys to attend a summer camp program then we had our prescriptions filled at Walmart. Picked up a white sheet.

Used the sheet to build a new projection screen. We found a projector back in March for about $250. MUCH cheaper than a television! The screen that came with it was okay, but it was longer than it was wide. We thought to hang it on the wall sideways, but didn't want to damage it. Leave it to clever hubby for an alternative. White sheet plus four 2X4's. He built a wooden frame, stapled the sheet to it, and hung it on the wall. Perfect projection screen and total cost was less than $20! has a better picture than our traditional screen!

We got home and let the boys know it was time to clean their room. I gave them until dinner time to get it finished. They got it about 90% done, but I give them major credit for effort! While dinner cooked (a yummy deli pizza baked in the oven), Rob gave haircuts on the front porch. No more mullets! I've dreaded seeing those mullets on the boys every day, but it's what they wanted at the time. But summer is here now so off with their hair! Brandon is now sporting a short, spiky 'do, while Matthew has his very short in the back with it a little longer on the top.

Before dinner was served, baths were in order and once their tummies were filled, it was off to bed. Rob and I stayed up to watch a couple episodes of "Law and Order". Rob is now teaching himself Auto-CAD while I catch up on Facebook, Myspace, email, forums and finally my blog.

It's been a beautiful, fulfilling, rainy evening. Time to go snuggle up with the cats and listen to the rain as I fall asleep. Praying for sweet dreams!

Tuesday, May 26, 2009

Low-cope day

Today was one of those dreaded days. The one where every little thing brought up memories of Tommy and I had to brush away the tears. Normally, this would have been okay, but it happened while I was at work.

It started with the rain. For some reason, the sound of the rain and the angle I looked out the front doors were just right and a memory came rushing back to me and nearly knocked me down.

We sang and signed "Itsy Bitsy Spider" to Tommy all of the time. He loved it! It took him several months to get all of the motions down, but we would catch him practicing all the time. One day, we had the front door open as it rained outside. We all liked to watch the rain fall. Tommy too. On this particular day, as we watched the rain, Tommy's expression changed. He got very excited and pointed out the door. He then started signing the motions to "Itsy Bitsy Spider". "Down came the rain and washed the spider out..." then he clapped his hands in glee! He realized that the rain outside was rain and the signs clicked in his head. It was such a beautiful moment.

So there I was at work, watching the rain, and seeing the scene above play over and over in my head. I fanned my face and chased away the tears, but my day was filled with his memory. Every song on the radio, every raindrop. The mommy who carried in her little girl that was about 2 years old. How can such a happy memory make me feel so sad??

I refer to these days as my low cope days. Days when my coping skills are so thin you can see through them. There's nothing really that you can do for a low cope day but muddle through it. Allow myself to grieve. I have come to realize that I will never stop feeling like he died yesterday. I guess some days I am better at ignoring the pain than others.

I guess I have to be like the "Itsy Bitsy Spider".

"The Itsy Bitsy Spider
went up the water spout
Down came the rain
and washed the spider out

Out came the sun and
dried up all the rain and
The Itsy Bitsy Spider
went up the spout again."

Wednesday, May 20, 2009

Reflections...9 Months Gone

A year ago, Rob was recovering from cardioversion and Tommy was learning to use a PMV. I wish I could remember more. I wish I knew that I only had 3 more months with Tommy. Yes, I cherished every single moment with him, but looking back, out of thousands and thousands of pictures, there seems like there could have been more. I could have made more videos in addition to the 75 or so I have. MORE kisses, MORE hugs, more everything.

Never got around to having that family portrait done. World's biggest regret.

Last night riding home from work, he was heavy in my thoughts. I didn't even realize what the date was. Just missing him a lot last night. I wish for sleep so often and pray for dreams of him, so I can hold him again. I watch his videos and look at pictures. No matter what, he was content. He knew the meaning of true and perfect love. He didn't know his life was a struggle. He didn't know he was sick. He didn't know how hard we worked to keep him healthy.

What he did know was humor. Laughter, silliness, jokes. He knew affection and learned to give kisses. He LOVED to blow the nurses kisses from his crib. He knew acceptance. He knew love.

I will never forget the day we were in Walmart. We rarely took him inside because of germs. But he was doing well and we couldn't keep him locked up forever, so we loaded him and all of his equipment into the stroller. We had oxygen tanks in the bottom of the stroller, his emergency bag and his suction machine down there too. His feeding pump came with us too if it was meal time. So here's my happy baby with his trach front and center, hooked to oxygen over it, and carrying enough medical equipment to stock a small ICU. I was sitting in the pharmacy waiting for his medications when these two little girls came up to him. They were about 6. Before I could stop them, they leaned into the stroller and stole a kiss from Tommy! He beamed from ear to ear. At first, I was scared they might have colds, but then it dawned on me that they never even saw he had a trach! They just thought he was the cutest little guy ever and kissed him and ran away. It was beautiful! I knew he had a way of drawing in the nurses at the hospital with that sly little grin of his, but that was the hospital. This was the first time somebody treated him like a typical kid. I don't know who the little girls were. Maybe they were Angels sent from Heaven to keep an eye on my little guy.

Maybe Tommy is out there somewhere, brightening someones day today. I picture him in the grocery with an Angel mom, him sitting in the cart with that gorgeous smile and bright blue eyes of his. Maybe someone is having a terrible day and when they pass by, Tommy flashes that grin and blows a kiss, making the bad day melt away.

Maybe he is that breeze on my cheek or the smell of the honeysuckle at night. Tommy was too big for his body. 9 months ago, he had to leave it behind, so that he may soar! His spirit was too mighty and too big to be stuck in such a little body.

And in that moment between falling asleep and beginning to dream, I feel his presence with me. In my dreams, we play and laugh. Cuddle and snuggle. In my dreams I get to hold my baby again. In my dreams, Tommy is whole. He giggles and breathes. Most of my dreams are the same. The doctors made a mistake. He didn't die. He's right here and I have to remember how to take care of him again. Then I realize he doesn't need all of that care!

I am blessed to have been Tommy's mother. I would gladly suffer the pain of losing him every day for the rest of my life until he is in my Heavenly arms again, just to have had the privilege to have held him on this Earth.

Monday, May 18, 2009

Morning World...

Good morning, world. For the first time in a week, I have a morning with no appointments, no obligations and no stress. The boys made it to the bus on time without any stress. That itself is a wonderful way to start the day!

Rob and I were talking last night about what the world expects and how we see ourselves. Society, family, all seem to want to push us in a direction we no longer wish to go. We no longer desire the "bigger, better deal". We no longer wish to work, work, work just to get nowhere in life. Sure, I have a job. Sure, I have days where I'd rather be doing something else, but for the most part, I love it. What it all came down to was that we are where we want to be in life. It will never get as good as it is for us right now.

We are so content with our lifestyle and our lives. Every morning, I wake up and look out my front door to see green grass and trees for miles. I rarely hear traffic. I hear the sounds of birds, the clock ticking and my cat chasing a toy. The boys have acres to run and explore out our front door. No longer confined to 15X30 strip of yard in a neighborhood of questionable people. Matthew can run next door and help his mamaw in the garden. Brandon can try to catch the barn cats (notice I said try!). Life is slow.

Our biggest fear is having to give up living here someday. We rent from Rob's grandparents. They won't be around forever and we fear if they are gone, then we would have to move. I hope there is a way that we can keep this little patch of Heaven. I can breathe. I feel no stress when I am here. The world stops moving when I look out my front door and comes to life when I step outside. The honeysuckle is in bloom. The blackberries have flowered. There are so many different kinds of birds that I have lost count. Bees, squirrels, opossum, deer. I've never felt more at home.

Thursday, May 14, 2009

Such a long, rewarding day

I began my day with a mere 3 hours of sleep. That's very typical of me, since I work late nights. When I get home, I unwind, have something to eat, check my email, and all the typical stuff that people do when they come home from work. Except I get home a little after midnight, which puts me getting to bed around 3 in the morning, then getting up again around 7 to get the boys ready for school. MOST of the time, I can go back to bed, but today I had appointments early in the day, so there was no heading back to bed.

My day started typically, but as the boys were about to walk out the door, something felt wrong. A quick check of the weather and I knew why. We were under advisory for a severe thunderstorm and it was headed right for us. By the time I had walked from the living room to the bed room to wake Rob to ask him to run the boys to the bus stop, I heard a whooshing noise and the sky opened up. It poured! Rob drove the boys to the bus and all was well. It had stopped raining heavily by the time we left an hour later for my appointments.

I finally made it home around 11:30 and hopped right into bed. I slept until the boys came home. Matthew went next door to visit his mamaw and Brandon and I had some quiet time. An hour later, we were in town again. We took the boys out for a cheap dinner, then headed to McDonald's for 99 cent ice cream cones. The McDonald's happens to be near a park so we drove over and let the boys run and finish their cones.

Once we made it home, the boys and I weeded the flower bed. Okay, I weeded, Matthew complained and Brandon played with his ball, LOL! Once it got dark, it was bath time and bed time. Happy to report that both boys are snoozing contently and it's barely 10pm. After weeding the flower bed, I might have to follow suit very soon. I'm tired! I couldn't begin to fathom why????

Wednesday, May 13, 2009

Venturing out

It's a beautiful day! Here are the boys enjoying a fun game of dodge ball.

Isn't our yard huge???? I love living out here! Sorry about the blurriness of the pictures. I took them with my phone because I loaned my camera to my sister.

Sunday, May 10, 2009

My first Mother's Day without Tommy

Decided to let a little creativity flow. Miss you, sweet baby, Tommy!

It's Mother's Day on Earth today. The mommies get flowers, gifts made by little hands, and hugs and kisses all day long. There are new mommies, and mommies who've been here a time or two. There are mommies-to-be, grand-mommies and Angel mommies.

And there are mommies who want this day so badly, and those who want it to just go away. Mommies whose babies play in the clouds.

Mommies who hear faint giggles in the wind and every little one reminds you of yours. It's Mother's Day in Heaven too, where time stands still and laughter is everywhere. Angel babies run and play and listen to stories at the Angel mommies' feet. From Heaven, the Angel babies look down and call our names. Listen closely, they're saying "I love you, Mommy. In Heaven, EVERY day is Mother's Day!"

Saturday, May 9, 2009


I'm having a surreal moment. It's a gorgeous day outside and I sent the boys out to play. Something I could have NEVER done in Charleston. The neighborhood just wasn't a safe place. Here, we are out in the country surrounded by cows. We have a huge yard with green, green grass. Animals of all kinds wandering through the yard. Rabbits, birds, and at night, deer.

Here's where the surreal moment comes in to play. My boys don't know what to do with themselves outside. For two years in Charleston, they wanted to go outside any chance they got, but either the weather was way too hot, or Tommy needed my constant attention. For whatever reason, it didn't happen very often. Life is so strange. They wanted to play for the longest time and now that they can, they have no idea what to do with themselves.

There was only one way to solve this problem. Make them go outside and fend for themselves for one hour. I'm hoping their natural instincts as curious boys takes over. Eventually. As I type this, Brandon is trying to come inside so that he can watch a movie. Drat. I think he's trying to break down my screen door. When will my kids start to have a "normal" life?

Thursday, May 7, 2009

The Breakthrough

I went to my Mamaw's funeral today feeling very mixed up, sad, confused and full of doubt. I picked up on the littlest things. Such as my brother being later than expected and my mom mumbling if he didn't hurry up she was gonna kill him. Um, mom... the irony cracked a smile on my face. He did make it time, slyly showing us the duct tape holding his shirt together where he was missing buttons on his good black dress shirt.

I looked at the sea of faces, seeing my cousins that I have not seen in 25 years all grown up into men and women with children of their own. I have never met my cousin, Rebecca's daughter. Wow! That little girl is her mom all over again! What a pretty little girl. I didn't recognize half of the people there. I was probably related to most of them, but since I haven't seen most of them since I was a child, I was mostly looking at their children to see who they looked like. Most people just stared at me. After a while, I figured out why. My mamaw's aunt Vonnie approached me and said "I know you're Ann's, (my mom), but I don't know which one you are!" It's then I realized I was no longer a child either and nobody recognized me! Weird moment.

Then "it" happened. The moment I was not expecting. The room filled with hushed whispers. "Dad's here, Here comes Nelson". My papaw had arrived. Slowly, with his cane, my papaw, dressed in his best jeans and plaid button down shirt, walked to the front of the room. As I watched, he leaned into the casket and gave my mamaw a kiss. It was the most tender moment I had ever witnessed in my entire life and my emotional wall crumbled before me. My eyes filled with tears and the grieving began.

During the service, I learned that my grandparents had been married for 59 years. 59!!! What a testament to love and perseverance. I never saw a bad word between them. They were each other's best friend. I want my marriage to be like theirs. Two best friends going through life together, loving each other and enjoying each other's company every moment of every day.

The service itself was a bit of a joke to me. My mamaw was not overtly religious and for a minister who never met her talk about the state of her soul for 30 minutes was a waste of hot air for me. I would have much rather heard about her life and not her death. I made it through, but thoroughly expected my mamaw to sit up and tell him he was full of horse....!

Rob came with me to the graveside service. She was laid to rest in the KY Veteran's Cemetery. It is such a beautiful place. Afterwords, we went back to my grandparent' house. It was good to be with family.

Funeral Today

How do I feel today? I'm tired. Worn out. I'm feeling guilty because I'm not mourning my mamaw's death. I want to skip the funeral today, but I'm going because of my mom. Sure, I'm sad she's gone and I will miss her greatly once I have taken down this wall and let the sadness in. But for now, I feel can't find any words.

I went to her visitation yesterday. Commented on how pretty the casket was. Beautiful flowers. Such pretty flowers. My mother in law was with me and I know she was feeling the same way. We looked at the wall paper, commented on the flowers, and both of us were thinking the unspoken. That it made us remember the last time we were in a funeral home.

I don't know why I am putting myself through this. I ran to the hospital to be by her bedside with the rest of my family when she passed away. I went to the visitation and now I'm going to the funeral this morning. Inside, it all feels like obligation and going through the motions. I know I will regret it later if I don't go. I guess it feels very technical and analytical to me right now. Autopilot. I almost wish this funeral was about someone I didn't care so much about. I feel like I'm not ready to grieve another loss. My mind just won't let me.

I've yet to cry. It bothers me that I don't feel that sadness, but maybe it's just my body's way of coping. I just watched another person I love die in front of me. Why did I do that to myself? What was I trying to prove? How strong I am? Time to get back into the swing of things? I feel so fake and phony right now attending this funeral.

I feel like I owe my mamaw a proper goodbye. It's respectful that I be at her funeral. I know this in my head. But my heart. It won't be bothered with any of the details and has slammed the door in my face. I know the entire time will be filled with nothing but memories of Tommy's funeral and I doubt I will even remember much about today. My mind is so cloudy with his memory right now.

I know there is no right or wrong way to feel when a person is grieving. People may think I am cold and pissed off today. Really, it's just that I don't know how to deal with any of it. My mind keeps dwelling on who's next and death is starting to feel like a business arrangement instead of raw emotion. Where did my feelings go? When did I get so jaded?

Monday, May 4, 2009


My Mamaw Winnie passed away today. My papaw held one hand and my mom held the other as she took her last breath and her heart stopped beating. My aunts hugged each other and cried. I didn't. Couldn't. I just went into robot mode. Watching the monitors, praying she'd heal and that the doctors were wrong. I didn't go to see her in the hospital during the last few weeks. I had a feeling in my heart that she wasn't coming home and I didn't want to see her incoherent and possibly not know who I was. Today I went because I owed her a proper goodbye.

She was a spitfire of a woman. She too, lost a child and finally, finally can hold her lost baby in her arms tonight. She was big on family history and could name off relatives of years gone by from old photos. Up until the time she was placed in the hospital, she did everything on her own. She and Papaw were very independent.

She loved dolls of every kind and had an entire room in her basement dedicated to her collection. She collected geodes.. pieces of rock with beautiful crystals in the middle. She loved to sew and to quilt. She loved her dogs. There were many dogs along the way, but her favorite little guy was a terrier mix named Seymour Butts. Yes, she had a wonderful sense of humor. When I turned 18, she sat me down and let me watch the movie "Porkies". She thought it was one of the funniest movies ever.

I will never forget her. I love you, Mamaw.

Diagram of Tommy's Heart Defects

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