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! Bonus..it 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!

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."

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.

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.

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????

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.