Monday, November 30, 2009

A Thing Of Beauty.

Changes. I'm not too crazy about them, but sometimes things need to grow and develop. Like my new blog layout. Took me for-ev-er to do it and it's not perfect, but it is pretty close to what I wanted. I found the background I wanted and knew I wanted a very personal header with a pretty border to match. It was a pain and I've been working on it for a week, but I finally got the picture INSIDE the border just like I wanted. Then the tricky part was finding a template that would not crush my youtube videos of Tommy to one side and just show a sliver of his face. Once I thought I had it right, I realized that blogger had jumbled my layout to a one column blog instead of two. More work to add new page elements, then copy and paste the old content to the new. I tried to just slide it on over to the new column, but nope. Denied!

So now, on to the reason for this post.

On Saturday, we were in town and I asked Rob if we could stop at the cemetery. I was hoping Tommy's headstone had been placed and I'm happy to say that it had been done! A few months ago, a friend put me in touch with the Dempsey Burdick Memorial Foundation. They provide markers to families in need that have lost a child. We were chosen to receive this wonderful gift for our sweet Tommy. I urge you, if you are looking for a charity to donate to for the holidays, please, please send them what you can.

I cannot tell you how sad it was to go to the cemetery and find that the mementos we had left Tommy had been removed for mowing and dumped into the trash without notifying us. If we would have just had a moment's notice. But that cannot be helped. It's policy, and I am sure one that is practiced in many cemeteries. Matthew and Brandon wanted a stone to lay things on so that they would not be taken.

When I was contacted and told we had been chosen, I could not begin to describe how it felt. Like the final moment of closure. Our son finally had a permanent marker to let the world know where his body rests. Rob and I were given the opportunity to design the marker ourselves. We immediately knew we wanted a broken heart with wings, but what else? Many people suggested Nemo, but it didn't feel right. It HAD to be bubbles, but we had no idea how to convey that in stone.

Around this time, my birthday came around and I was sent a handmade plaque made by the sweetest, sassiest little girl I know. It means the world to me. So much so, that if you look in my header, you'll see the picture I so desperately wanted to frame with a border and use here on my blog. She and her mom got me through some tough times. They were the first people I met online when Tommy was a baby and first trached that also had a trach and heart defects. We've bonded long distance through emails, Carepages, Myspace, Facebook, phone calls and endless texts. We've been through wonderful highs (her daughter getting out her trach) to the lowest of lows. Tommy dying.

When I got the plaque, I knew immediately that it had to go on the headstone. The representative from the monument company came to our home to help us and she took pictures of the plaque to use in the design. I quit talking to everyone about the headstone around that time because I didn't want anyone to know until it was finished, and then I wanted my sweet girl and her mommy to know first. I texted her and told her to get tissues first, then sent the picture to her phone.

It's a thing of beauty.

Thank you Lexie for your inspiration. Thank you Suzanne for loving my Tommy as much as I do.

I love what the sunlight did in this picture. I think Tommy likes it.

Saturday, November 28, 2009

Blogger Blahhhhh

I have been attempting to spruce up my blog this evening, but for some reason, no matter what I do, the templates will not work. I hope it is a glitch that will be corrected soon. Bear with me while I try to work out the bugs.

Thursday, November 26, 2009

Thankful Doesn't Cover It

It's Thanksgiving. Technically. Last year, I did not know what to do with myself. We'd recently lost Tommy and we had just settled back in Bardstown. Life was hard, stressful and very sad. Rob and I were treading new territory in our marriage. I had much to be thankful for, but it was a struggle.

For the two previous years, Thanksgiving did not exist for me. Tommy lived for two Thanksgivings. Both were spent in the hospital. First, as a newborn, struggling to live after open heart surgery and all of its complications. I don't even remember how I spent the day or where I had dinner. I just remember my little guy in PCICU for his second month. The next year, we were back again. This time with the flu. He'd had the flu shot and the booster, but he still got the flu twice that season. Lots of oxygen, lots of breathing treatments, lots and lots of suctioning his trach so he could breathe. My sweet hubby brought me food and I was able to have a wonderful meal from the volunteers as well. We had a lot of love surrounding us, but it was still a long two weeks in that hospital room.

Thanksgiving has always been a fun time for me. I never miss the Macy's parade, but this year I will. Our antenna isn't working. I could walk next door to Rob's grandparent's house, but I really hoped to snuggle up in bed with my boys and watch from home in our jammies. I don't want to get and trudge across the field at 9 in the morning with cranky kids just for tradition's sake. Plus, they don't care about the parade anyway.

Thanksgiving this year is such a blessing. Rob's grandmother survived heart surgery and is up and about, better than ever. I have a good job, the kids are doing well. My marriage is healthy. I am well. Part of me will always be missing, but I know he's with me always, just slightly out of reach.

I've been putting in all nights and weekends on my job. I miss lots of birthday parties and family dinner on Sunday afternoons. I am so fortunate that Thanksgiving happens to fall on my regular day off. I spent today with Rob and the boys. We cleaned house and I made deviled eggs for my side of the family for tomorrow. We will have lunch with Rob's family and then dinner with my family. It's going to be a long, fun day. Thank goodness there is no school Friday, so I will get to sleep in. No Black Friday for me!

Thankful, blessed, loved. Tommy would approve.

Wednesday, November 18, 2009

Too Much!

How do I explain my living situation without the whole world turning against me? Because that is what today feels like. I was called to a meeting at the school with the Resource team under the guise of offering me assistance with their programs.

Instead, I was sat in a room with 4 other people as they voiced their concerns about my family. It was a bunch of nit-picky little things that made me feel attacked and belittled. I was told Matthew's clothes look frumpy and disheveled. Funny, those are the clothes the school gave him. I was told I MUST walk my children to the bus stop each day even though I can see them from my front door or the bus driver will report me and the school will "take action". In other words, report me to social services for neglect.

I work odd hours and sleep odd hours. They are appalled that I am doing laundry at 3 in the morning, so they are referring me to someone to come to my home to help me get organinzed. People, I don't need to get organized, I need sleep! I need my kids and my husband to pitch in instead of leaving everything to me. Somebody coming to my house making lists and pie charts is not going to fix anything.

I feel like because I am not a Suzy Homemaker that I am not a good parent. Yes, my kids have issues, and I am addressing them. I don't need the school psychologist telling me that my kid's behavior is from lack of sleep because of MY job. I don't understand what they want from me, although they "sweetly" told me in writing everything that I am supposed to be doing.

I am ready to tear my hair out. I get no help at home, I'm working to support my family on just my income and I feel like all I do is work and sleep. I should be sleeping now, because I have been called into work on my day off, but I can't sleep because I'm so mad!

Their idea of help was to attack and bully me. I feel like I have to quit my job to stay home with the kids full time to make sure they do their homework, take baths and have a clean home. But then, who would provide the income? Oh wait, that's me again. My house is a wreck and instead of using my day off to clean (like I always do on my day off), instead I have been called into work. Another day not at home with my kids. I never see them.

I'm so tired. Physically, emotionally. I don't have time to do anything. I need a break, but it's not going to happen. I'm already under so much stress that I ended up in the emergency room last month with heart palpitations. I'm not allowed any more caffeine. What I need is a week. I need two days to completely rest up, 5 days to completely rearrange, reorganinze and scrub my house-without kids around to mess it up again, then two more days to recover. My job doesn't offer paid vacation time.

I have one hour before I leave for work, yet again, so I am going to attempt a nap. So far I've managed to squeeze in two short naps since I got out of work last night of three hours each. I hope when I wake up, my house is clean and I'm a size 6.

Saturday, November 14, 2009


Recently, I have gotten a few spam comments. For this reason, I've decided to moderate all comments from now on. Sorry for the extra step. I enjoy everyone's comments very much, but I don't like finding an ad for Viagra in a post about a sick child. Thanks for understanding and I hope everyone continues to commment.

Monday, November 9, 2009


As the weather has gotten colder, the mice have started to make their way in. The boys think they're cute, so that's why we don't let them see the traps. Annoying little suckers, and noisy too.

Keeping my kid's love of rodents in mind, hubby went to the pet store. Turns out he could get them a cute, fuzzy hamster for free if he payed $18 for a cage the size of a raisin. No, thank you. The very next day, I was at work and a customer came in. She was on her way to the pet store to unload some of her rapidly multiplying hamsters. Did I want one? For free? I couldn't dial hubby's phone fast enough.

In the box, were 11 dwarf hamsters. Yeah, the ones the pet shop wants $18 for and they were ours for the taking. We selected the older 6 and my sister adopted the younger 5. This was a Friday night. They were all brought to us in one container, so until we could get home, this is how they stayed. Once we got them home, they each went into an individual temporary container. Walmart only had 3 water bottles on the shelf, so that left us with 2 and my sister 1. We rotated every few hours until we could get to the pet shop Saturday.

By Sunday, we had began to move them all to glass aquariums. Two to an aquarium with plexiglass to keep them separated. As we observed them, Matthew said something that made my jaw drop. "I see babies". No you don't, son, it's just bedding. He pokes his finger into the cage and says "there, see that little pink thing MOVING?" Oh no. Quickly Googling the gestation period of hamsters, we learned it was 2 weeks. Since we'd kept them separated from the beginning, it didn't happen on our watch. As we looked at our 5 remaining hamsters, we began to wonder how many more came to us with child. One week later, we'd have our answer. We had just 2 mommies in our midst. Between the two of them, we've doubled our hamster population. Plus one. Six hamsters, seven babies.

Being the little rodent loving kids that they are, the boys are thrilled to see the babies. Matthew likes to take a look every so often, but Brandon has turned into quite the little zoo keeper. When hubby was young, he had hamsters for a very long time. He raised them, bred them, and knows quite a bit about them. To see him and Brandon bonding over hamsters is wonderful! Brandon cannot go to bed until he's checked them out. On weekend nights, we let him stay up to help change bedding, refill water bottles and feed them. Once, we told him it didn't need to be done that night and he cried out "you did it without me?" I had to explain that they had plenty of food and water and just didn't need tending that day. He checked on them anyway.

Brandon delights in putting in tunnels made of toilet paper rolls in their cages and watching them run through them. He adjusts their wheels so they can run. And he calls them his "hamstees". While at Walmart this weekend, he sobbed because we could not buy the hamstees one of those giant plastic environments with tunnels and add ons. At $35 a pop, I am satisfied with letting them run through toilet paper tunnels. They don't know the difference! Brandon said the hamstees need something special. Maybe Santa will consider one.

Our babies are now one week and two weeks old. The two week old litter is leaving the nest to eat and have their eyes open. Brandon has declared they have grown eyes. At 4 weeks, they will be ready to leave mama and be on their own. Just in time for Christmas. I'm putting up a flier at work to find some of the babies new homes. Not that they're expensive to take care of, or even a lot of work. I'm just happen to be running out of room for cages.

I have been comparing notes with my sister who adopted the smaller hamsters. Against my advice, she has kept them all in one cage. Should be another week before she's observing little naked pink hamsters herself. She's started hunting down individual cages. Time will tell how many she needs!

Thursday, November 5, 2009

An Update on Brandon

A while back, I posted that we were trying to get psychological assistance for Brandon for his behavioral issues. We were able to start him on medication and after one tweak to a higher dose, it seems to be working for him.

Yesterday, we saw his psychologist for a second time. Lots and lots of questions were asked of me. I tried to explain things as clearly and fairly as I could. Brandon played with playdoh the entire time and was an angel. At the end of the session, I asked the doctor if she was leaning toward any diagnosis. She said no. Brandon is very complex. He doesn't fit into any one category and yet, we both agree that something is amiss with Brandon. You can see it, sense it. Something isn't right but nobody can put their finger on it. She said she's still considering a diagnosis of bipolar but wants to see what his teachers, counselors and other people that have interacted with him say.

She's never seen Brandon off of his meds. I'm wondering if that would change things? I'm more confused now than ever. How can my sweet guy be playing nicely once second and so explosive the next that he's destroying things and hurting people? From the very little I understand about bi polar, there are rapidly cycling periods of depressive states then euphoria and mania. While he does show the euphoria and mania, he's never been in a depressive state outwardly. He's either happy or mad, not happy or sad.

Now that he is on meds, we are also starting to see an increase in his compulsive behaviors. Repetitive picking to one place on his scalp has surged, he's stammering over his words more, and he's not able to transition activities well. He will become hyper focused on an activity and can't/won't stop until it's complete.

I wish I had more answers than questions, but I am so thankful that we have a great team of people surrounding him that want what is best for him and not to pump him full of drugs just so he will sit still and be quiet.

Monday, November 2, 2009

To Be Thankful

One year ago, I was truly alone in the world. I had nothing left but my tears and my broken heart. In the aftermath of Tommy's death, the older boys stayed with their grandma while Rob and I settled things in South Carolina. Except nothing got settled. Instead, everything in my life went wrong. Rob left me and moved to Kansas. We tried to stay friends, but we were planning a divorce. Our home went into foreclosure, so instead of dealing with our fractured marriage and dealing with our grief, we packed things into separate sides of the rental storage shed. His things in boxes on one side and mine on the other. It shredded me.

I moved to KY and stayed with my sister. I was a depressed wreck. Tommy had just died, my kids were closer, but since they were in school and an hour away, seeing them was difficult. I was looking for a job and couldn't find one. I spent some time in a treatment facility to get my act together. I can't describe what it felt like to live in my body last year. Even now, remembering, I feel queasy. Somehow, I made it through each day.

Once Rob was in Kansas, it became clear that his life there was not what he had planned. We made plans and he came to KY. I was still living at my sister's, so he moved there with me. It was NOT easy. For the first time, we had to face not only what had happened to Tommy and all of our loss, but we had to make the decision if our marriage was worth saving. Emotions were very raw and once the full truth of what had happened to us came out, the phrase "adding insult to injury" is the only way to describe how I felt.

I begged and pleaded with Rob for one more chance. I told him that we would give our 100% to our marriage and after 3 months if it wasn't working, he was free to walk away, no hard feelings. So we started with Day 1. We skipped our wedding anniversary and spent every day talking about everything under the sun. It was just the two of us. We were still friends, that made things easier.

Our biggest boost came when we moved out of my sister's house into our own place. We didn't want to take the kids out of school until the end of the semester, so we had about 3 weeks of 24/7 alone time with each other. I already had a child from my previous marriage when Rob and I started dating, and then Matthew came along shortly after, so Rob and I never had "alone" time in our marriage. It's funny, living with someone for years and never knowing them. I am very blessed to have had those 3 weeks.

I'm not sure when it happened, but the time came around after the first of the year. It was very close to our 3 month agreement cut off date. We had made a huge effort to be nice to each other and we had not fought during that time. Something happened this day though, and I had had enough. I felt like he was holding back and not giving me his whole heart. I decided that I was going to move on with my life and told him so. For the first time ever, I saw my husband panic. It dawned on him what was happening and he let it all go. All of the resentment, the heartache, the pain. He wanted me. Forever. I knew from that moment my marriage had survived.

So here we are, a year later. I'm no longer alone. My kids live with us again, I work. And above all, I am happily married. When my life could not have been any darker, I have come through it a different person. My life is far from perfect. We're broke all the time, Rob is in poor health and cannot work, Brandon had behavioral issues. Tommy is still gone. My house is a mess, my feet hurt and I'm tired all the time. And I am HAPPY about all of that! We're broke because we're paying bills. Rob can't work, but he takes care of our kids instead of daycare. They have their daddy in their lives every single day. Brandon is getting help instead of falling through the cracks. I have a roof over my head and my feet hurt because I stand on them working the job to support my family. I am so blessed and thankful for those things.

Most of all, I am thankful my husband gave our marriage another shot. I've never been so happy in a relationship. Yes, we argue, probably more than we should but we work it out. Every day is still a challenge, but we rise to the occasion because we want each other more than anything. Our wedding anniversary is coming up again in two weeks. I'm thrilled it gets to be a happy day again.

November is supposed to be a time to look back and be thankful. I am so very blessed. I've never fought so hard for something I wanted. I wanted my life back. It's been so hard. In the process of all of this mess from last year to now, I've managed to figure out me. I have always put myself last as most moms do. Just when I don't think there's any more room to grow, I do. I'm thankful for myself. I love my husband so much and I am thankful he loves me. Every day is a blessing. Every morning when I wake up, I still get butterflies knowing the man I love more than anything is right there with me. Always.

Diagram of Tommy's Heart Defects

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