Out With the Old....

Here we are. New Year's Eve, 2009. In a few hours we will be ringing in the new year. I wishing for a year of hope and promise. I've made a couple of small changes so far, one of which is Brandon's medication regimen and the other being my hair. Okay, my hair isn't a small change. It's quite drastic! I do love it, though.

I'm liking the whole look without the glasses, so I'm considering contacts as well, but we'll see how that goes.

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I've been out of work since Sunday night. I woke up feeling feverish and not well, but I thought I could tough it out. Wrong. I made 3 hours into my shift before I had to call my boss to relieve me. I came home, ate a bowl of soup and went to bed. I stayed there for about 36 hours before I even had the strength to stand again, and even now, its rough to be up for more than 10 minutes or so. I kept a fever of 99.9 the entire time I was in bed. Once the fever broke, the coughing began. Let me tell you, I prefer the fever. Nothing like trying to use my touchscreen phone when a coughing fit hits me. I hit the wrong tab every time.

Rob was kind and took care of me while I was sick and kept the house tidy. Once I was able to raise my head for a while, we moved my laptop to beside the bed so I could keep up with the world. I have some wonderful friends on the Internet who've made me laugh until I cough until I can't breathe. Got to love a friend like that! I plan to meet up with them again later tonight for some New Year's Eve shenanigans.

Since I am home sick from work, I can't be out traipsing all over just because it's New Year's Eve. It was horrid enough taking Brandon to his appointment with his psychiatrist today, but it had been postponed three times in December, and we really needed to discuss how he is doing. The medication we had him on was adding to his aggression and compulsive behaviors and he has lost more weight that we are comfortable with from his lack of appetite, so we switched up the meds. But I digress. I was talking about New Year's...

So instead of traipsing around this evening with my wonderful hubby and kids, I will be enjoying New Year's Eve from the comfort of my warm bed and the light from my trusty laptop. The hubby and kids are headed to a family evening at church and then to a friend's for pizza making and to watch the ball drop on TV. The beauty of all of this is....

I'm going to be alone!

No kids, no hubby and complete control of the remote! I can't think of a better way to spend an evening. Okay, I can do without my lungs trying to escape my body every 20 minutes or so, but other than that, I am giddy with excitement trying to figure out which movie to watch first!

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Since I've been a very bad blogger and let Christmas slip by without posting, I wanted to add that Christmas was wonderful. Financially, I didn't think I would be able to pull it off, but at the last minute it all came together. I got the kids what was on their lists, but not their dream gifts. I was prepared to tell them Santa wasn't able to make enough, but at the last minute, my mother in law was able to get them each their one dream gift. Matthew's was a DSi, which is the newest version of Nintendo's handheld system. Brandon's was a Spiderman bike. The look on their faces was pure joy. Santa still lives on in our home for another year.

Here's to a Wonderful, Blessed, Joyful, Happy New Year!!

Christmas Spirit.

In 15 days, it will be Christmas. I don't know how I got to this state of mind, but I'm downright giddy! Our tree is up and decorated (thanks to the boys, who always do a wonderful job) and I can't stop listening to Christmas music on the radio at work. We have a tree up there as well, and lots of garland. I went a little crazy with the garland, but that's okay because my sister went a little crazy with the outside lights!

For those that don't know, I work in a convenience store. It's owned by one person and we have just 3 employees: the owner's brother, my sister and me. It's a very laid back job. No uniforms or name tags. I usually wear jeans and a ratty tee shirt because on my shift, something gross is usually getting cleaned. We have old gas pumps outside. So old, that they don't have credit card readers! People actually have to walk in to pay me. We have a lot of regular, neighborhood customers. We get to know them and they get to know us. New customers get confused. They will begin a conversation like "remember yesterday, I was telling you...." or "you just carded me this morning!" They're stunned to realize that my sister and I are not the same person. We do resemble each other strongly. The best part is when she's there with me and someone comes in the store and does a double take, realizing there are two of us and not just one person working all day long.

For the past week at work, I've been listening to Christmas music and wearing a jingle bell necklace. When I am in the mood, I wear reindeer antlers. The customers love it! I dress up for all of the holidays. I wore head to toe green on St. Patrick's day, complete with glitter covered hat. On Halloween, I wore a green wig and a glow in the dark tee shirt. Antlers aren't really a stretch.

Two days ago, I had one of my regular customers come in the store. He shook his head in disbelief when he saw my antlers, making the comment he hadn't finished digesting his Thanksgiving dinner yet and wasn't ready for Christmas. I told him I couldn't help it, I was full of Christmas Spirit this year as I cheerfully rang up his purchase. He laughed a little and said he'd probably walk in to see my sister wearing a Santa hat. I showed him our collection to choose from for her to wear. I think he said something about us being crazy as he left. Last night he came back.

He told me he was starting to get into the Christmas spirit and it was because of me. He said he'd thought about me that day and it cheered him up and put him in the Christmas spirit. I shared with him the reason for my silliness and love of the holiday this year.

I told him, last year, my baby died. The last thing I wanted to do was celebrate anything. I was numb and went through the motions for my other kids. The two previous Christmases were difficult because we didn't have family around and could not travel because of Tommy's complex issues. I told him this year, I felt free. Free from the grief that consumed me last year and I I felt like Tommy was giving me permission to be happy. I told him I would always, always miss my son, but now is the time to celebrate and to find the normal again with the family I have left. I could see from his face that he walked out of there changed inside. Even from Heaven, Tommy is still touching people's hearts.

I haven't bought one gift yet. I usually wait until the last minute because the boy's tastes change hourly. I also have no place to hide anything. In my last update, I wrote about giving of myself to my kids for Christmas. Our family has never experienced a typical Christmas, so this year, I am trying to give them wonderful memories. I'm 38, and can only remember a few gifts I got for Christmas as a child. What I do remember is the way the house smelled when my dad baked cookies and no matter what, I had an apple, an orange and walnuts in my stocking every year. I want my kids to be excited about what Christmas means than what they can get.

Today, as I was walking the kids to the bus, Brandon asked me if he could have another surprise today. I asked him what he wanted to do after school today and he couldn't decided. He just wanted it to be a surprise! We settled on baking a batch of brownies while we color pictures and make paper airplanes. I hope when he's an adult spending time with his own kids, that he looks back to the December when he was 6 and remembers parades, brownies and coloring with mom. I hope Matthew and Brandon both feel loved more than ever this Christmas and no matter what is under the tree, they have memories of how they felt and not of what they unwrapped.

Love and Time for Christmas

Christmas is coming up fast. There's not going to be much to go around, but I'm determined the boys are going to have so much fun that they won't notice the amount of gifts not under the tree. I've spent the past two days doing the most fun things I've ever done with the boys.

Last night we watched "A Christmas Story" after homework was done. We had a great time and lots of giggles filled our home. Today, they came home with big grins asking what today's surprise was going to be. Trying to keep a straight face, I told them we had to go to town to run an errand. They didn't believe me. (Of course there was a surprise!) We stopped to get a little drive-thru dinner and drove to a parking lot in town to eat. So far, so good...UNTIL...an older gentleman knocked on our car window and asked if the parade was going to go passed where we were parked. Busted. Tonight was our town's Christmas Parade. I'd been planning this for 2 weeks and I almost pulled it off. Oh well. The cat was out of the bag.

When it was time, the boys and I got out of the car to watch. I noticed the traffic was turning at the light in front of us instead of a block down, so I knew we would have to move if we were going to see. We didn't have to go far, just about a half block down. The boys were thrilled! They thought the parade was going great, the best thing they'd ever done until the first float threw candy at them. Holy Cow! You would have thought they were throwing $20 bills the way my kids scrambled the sidewalk to pick up each precious piece and shove it into their pockets for safe keeping. By the end of the parade, they had three full pockets each of candy, coupons for free cookies, pencils and Liberty crowns.

Boy Scouts, Girl Scouts, fire trucks, classic cars, horse drawn carriages, floats and Santa himself. We stood in the cold for 90 minutes as the parade slowly crept past us (with a huge gap every 5 or 6 entries). The best part was when the Salvation Army rode passed and handed out hot chocolate to the crowd. It was cold! 38 degrees at 6 pm. I couldn't feel my toes by the time Santa rode by shouting "Merry Christmas".

When we got home, we dug the tree and decorations out of the shed, I assembled the tree and strung a string of musical lights and let the kids to whatever they wanted to the tree. It looks fantastic! Tomorrow, I head back to work, so there won't be any surprises for the rest of the week.

I don't have a dime to spend on my kids right now, but I totally believe in Christmas Magic. And overtime. I plan to get them each a few small things, but there won't be any giant gifts under the tree. Honestly, if I can keep up these awesome surprise days when I have days off, then by the time Christmas gets here, it won't matter what's under the tree. It will be about the special time spent with mom and dad watching movies, going to parades and whatever else I can dream up. I have 6 more days off until Christmas, with my last day off being Christmas Eve. I'm thinking one night can be cookie baking night, and another another night we can do a fun craft to create a gift for the grandparents. We can share the story of the Nativity another and I hope I can instill in them the reason for Christmas and not the gifts behind it.

My gift to my children is me. I can't wrap my time up in a pretty bow or put a price tag on what it is worth. My kids will still expect gifts under the tree, but I am hoping their hearts will be full of Christmas love well before the day on the calendar.

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.
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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.

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.

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.

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.

Comments

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.

"Hamstees"

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!

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.

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.

Deja Vu

There's a family in Charleston at MUSC that is facing some very scary things tomorrow. Their son is HLHS and can't make it off the vent. Tomorrow he is having 3 surgeries. A Nissen Fundoplication, a Gastronomy Tube placed (G-tube) and lastly, tracheostomy.

I know what this family faces. Three years ago, I walked this road myself. It was long, dark and lonely. Now that I've moved back to KY, I can no longer just go over to MUSC and visit the families like I used to do. I miss it terribly, not being near the hospital. It was my second home and comforting other parents going through what we had faced was not only therapeutic, but became what I want to do with my life. NO parent should have to face going through what I did with Tommy, before he was born, during his life and in his death. But his life passing through mine made me who I am.

I walk through my life with a sense of humor. Sometimes it is a bit wry and askew, but I'm not exactly one to conform to the masses either. Remembering Halloween right after Tommy was born, seeing the scars all over his body and the fresh zipper down his chest, I joked we should paint him green and let him go as Frankenstein. Unfortunately, he was very, very sick at the time and my humor was there to rescue me from my misery. A year later, discussing what our wee one should be for his first "real" Halloween, we tried to figure out how to incorporate the machines keeping our baby alive. Trach babies make a gurgly sound when they breathe sometimes. Perfectly normal. Just a little secretions hung up in the trach. I seriously considered a Darth Vader costume, but when I acquired the little Vampire costume, it was a done deal. He was the cutest little vampire on Earth.

I don't know the family at MUSC personally. I wish I did. I would bend over backwards to be sure they had all the help and moral support they need. My emails will have to suffice. I have such a passion in my heart to reach out to families with kids that have special needs. I don't know what I would categorize myself as. Part counselor, part researcher, part well of information. I want to turn this into my career, but can't seem to catch a break. I was accepted to college early in the year, but as the admission date got closer, it became very clear that we financially could not swing it. Even though I qualified for financial aid, transportation was a huge issue. I already travel 45 minutes one way to work. Attending the college where I was accepted would have doubled that and the amount we pay for gas. But I'm NOT giving up! I just need to broaden my options.

My heart, my dream, Tommy's legacy lies in reaching out to other parents. I want to learn ASL well enough to teach it, I want to attend IEP meetings and make sure the parents get what their child needs, I want to sit in hospital waiting rooms with moms and dads while their child is in surgery to remind them to eat, have something to drink and to talk to someone who has been in their shoes. I dream of a day where I can support my family financially by doing what I dream.

Today I dream about reaching out to that family in Charleston, with a sense of deja vu. Knowing what they are facing and wanting to let them know I'm here. That's what I wanted when I was going through this with Tommy. I wanted information and I wanted to hear what it was REALLY like, not what the doctors told me, but what a mom would say. Now I'm that mom. I have a lot to say. Just ask.

Stellan

I fully intended to blog today. I have a lot of my mind that has been causing me stress. I needed to vent. And then I saw the words I hate to see. "Pray for Stellan". Oh no. I flew right over to their blog to check up on the sweet baby I've been following for months now. Stellan battles supraventricle tachycardia (SVT) and this is looking like the worst bout yet. I still have a tear stuck in the corner of my eye from reading about how things changed so quickly for him last night.

Stellan turns ONE tomorrow! Please pray that his little body can snap out of the too fast rhythm so that he can enjoy his birthday.

Having a heart child is not easy. It's a daily struggle. What Stellan is going through is what my own son, Brandon, potentially faces. Although Brandon is at low risk, his IS at risk. We've taught him to tell us if he feels like his heart is beating too fast or if he feels "butterflies" in his heart, or if he's in any pain. So far, he's told me twice. Both times we took his pulse and it was a little on the fast side, but completely normal. I'm very glad Brandon is aware of his body and tells us when things don't feel right. Poor Stellan doesn't have that option yet.

Heart defects come in so many forms. From the very serious single ventricle defects like Tommy suffered from to short PR intervals that Brandon has been diagnosed with and everything in between. Too fast rhythms, too slow. Holes big and small. There are so many! Here is a website that lists several heart defects. Tommy's is listed under Single Ventricle and is called Double Inlet Left Ventricle if you'd like to read about his. To read more about Stellan's condition, I found this link.

I wish I could reach out to every single heart parent in the world and scream that I understand. I pray for MORE research, MORE awareness, and someday a cure. Nobody knows why in those first early weeks of pregnancy does the heart not form properly. It's so early in the pregnancy that many are not even aware they're pregnant yet. Heart defects don't discriminate.

I am just one voice, asking for prayers not only for a little boy, but for ALL kids out there suffering from heart defects. Tommy was blue his entire life. I never got to hold and play with a healthy pink baby. I've seen him pink twice. Both times he was sleeping, on 100% oxygen and it was only for a moment. A rare glimpse at what would never be.

Tommy has so many playmates in Heaven now. Please pray he doesn't get any more for long time. Especially Stellan. Pray not only for Stellan, but his wonderful mother who shares his story with the world and for his family that loves him very much.

Haunted

Am I coming to terms with the horrors I saw that day? Am I ready to deal with them? I don't know. Fact is, I can't get the images out of my head. The look on the medic's face as she looked at me. It was a pitiful look like she knew there was no hope and the doctor was just placating me.

The determination on the doctor's face as he realized Tommy was in full arrest and started CPR with a vengeance. Then switching off with nurses and medics. All of them sweating profusely from the sheer force of trying to save my boy's life.

The sound of anger in the Attending doctor's voice as he asked for a cuffed trach tube, but none could be found on the crash cart. Wanting to know why he didn't have IV access and had to waste precious time getting in a line.

The sound of the inncessant beeping of the heart monitor as it began to flatline. The look on the nurse's face through the window as she tried to get me to leave the room. HELL NO!

One of the medics shouted above the fray, wanting to know what Tommy was on "contact" for. I was the one shouting back pseudomonas. He flung his mask and gown off to get closer to Tommy and work harder.

I shouted his diagnosis to the medics that did not know him. I gave his history and made corrections to what was in his chart. I wanted more than anything to jump into the middle of it all and save my son's life.

Through it all, I was calm and in complete denial. Tommy had coded before. He'd been sicker. I kept wondering why they weren't moving him to the OR to start heart surgery. I was guessing he had to be stablilized. I watched my son's naked body with blood on the sheets from the emergency IV with someone compressing his heart while another breathed for him with an ambu bag while another gave shots of life saving drugs trying to restart his heart. Except watching it all, I didn't realize his heart had stopped and that meant death. I thought his heart was having trouble because it was sick, not because his body was dying.

Even when the attending called in the chaplain, I would not give up hope. My son was a fighter and had been through so much. He couldn't just die like that. He'd been fixed before. Pulled through when we thought there was no hope. And then he said it. "Call time". 10:50pm. The noise stopped, the room full of people filed out. Gone. He was just here. Blowing me kisses and signing "I love you" from across the room. My poor, sick baby. I denied it all the way until the end. I never gave up on him.

It's been over a year. The scene plays out in my head on a daily basis. I block it out the best I can, but when I am alone at work and the rain falls outside, the images will not go away. When we drive through certain parts of town (near the hotel where we stayed during the funeral) feelings of grief and horror rush back to me.

I talked to Rob about all of it and think it's time to start seeing a counselor. I saw one before but had dealt with all I could deal with at the time. Now it's time to face the hauntings.

Being Sick Has its Benefits

So this is what life is like? Working outside the home, cherishing my days off and trying to fit in sleep and a little fun. I have a cold today and I spent the entire day alone.

I just realized that it has been nice to be sick. No, I am not enjoying the headache or the fact I can't stop coughing, but that I got to spend a day alone. Originally, I was to head into town to run errands all day long, but when the alarm clock rang this morning, my body responded by putting a vice grip on my head. Not a fun way to begin my day. I sent Rob to run the errands alone and I burrowed back under the covers.

Around 1, I was able to climb out of bed long enough in search of ibuprofen and caffeine. I then popped one of my favorite movies into the dvd player in my room and had a peaceful afternoon. By the end of the movie, my headache had diminished. I still have my annoying cough, but I will live.

My mother in law happens to be at her mother's today. Rob's grandparents. They live in the house in front of ours and the boys have to pass by there to get home after getting off the bus. I called and gave her a heads up that as soon as the boys saw her car that they would probably make a beeline for her. I was correct! About five minutes after the bus dropped them off, my phone was ringing. It was Matthew requesting "pleeeeeeease can we stay over here with grandmaaaaaaaa?". I already knew I was letting him stay (so I can have MORE quiet time!), but I had to mess with him just a little. I asked him about his day, his school projects. Did Brandon have homework? Did he? I managed to drag it out about 5 minutes before I told him yes, he could stay. He was suspicious, so he asked for how long? I never really gave him an answer, because what he doesn't know is that we've been invited over for dinner tonight, so he was staying late anyway. I just want to keep him on his toes.

Most people would see having a cold on their day off as an inconvenience. Why waste a day off doing nothing when there is so much that can be done? It has been the best way to waste a day in my opinion! Why be tough and force myself to run errands with a headache? Instead, I took the time for ME. I have never been one to do much for myself. I've always put others ahead of me. I'm a mom, it's what we do. I don't particularly like being sick, but for once, it was nice to tell the world to go away. Maybe one of these days I will figure out how to do that when I am not sick.

What Would Have Been

My little guy would have been 3 today. Would he be walking yet? Talking? How big would he have been? Tommy is Forever One. He died 35 days before his second birthday. Last year, I was completely alone. It rained. I cried. I blew bubbles. I sang "Happy Birthday" between sobs to the ceiling as I lay in bed that night. It was such a sorrow filled day.

Tommy's birthday should be about life and joy, because that is what Tommy was. He was a flirt, he was a Ham. He was JOY. I don't know another word that described him so completely. Tommy had one birthday party in his life and it was amazing! He smashed chocolate cake and smeared his face with it. I cleaned him up in the bathroom at the park where we had the party. I didn't really plan that very well. I thought I would just be wiping his hands with a wet wipe. I did not expect to have to bathe him in cold water in a public restroom and dry him with scratchy paper towels while he protested the cold and turned a nice mottled shade of blue. I will never forget the scowl on his face. He was happy once he was dressed and back enjoying the sunshine, but for 5 minutes in that restroom, I was the enemy!

I want to share a very touching experience I had today. For the past couple of weeks, I have immersed myself in plans for my 20th high school reunion happening this weekend. It took my mind off of Tommy's birthday and missing him so much. But tonight my emotions got the best of me while I was at work and before I knew it, I was drying my wet eyes. As I am composing myself, a regular customer comes into the store. He buys scratch off lottery tickets and loses. He then asks my opinion on buying another, which he does. As he his scratching, I reach out to touch the jar sitting on the counter. Tommy's picture graces the front. My boss gave me permission to collect change to help with expenses. As I gaze down on Tommy's face, I realize someone has scribbled on the plastic with an ink pen across Tommy's face. Very annoyed, I speak out loud about who would do such a thing to MY baby! I reached for the glass cleaner and was able to clean it off.

The customer is shocked to learn the child is mine. My baby in Heaven. He quietly asks what happened and I give him the 4 second version. Softly, he begins to tell me of his own losses. His first child born 3 1/2 months premature passed away at 11 months old from SIDS. A second child miscarried, and a third also born premature doesn't live throughout the day. The oldest child, a girl, was born on September 26. One day after Tommy's birthday. I couldn't believe he had suffered so much loss. I don't think he's even 30 yet. He and his wife have been blessed with 2 healthy children now after all of their loss.

Shortly after he left, I had another customer ask me about Tommy. He shared that he lost a little girl when she was 3 months old. She had been a happy baby and never cried, not even when she was hungry. He and his wife went on to have 6 more children, the youngest a girl who turned out to look nearly identical to the daughter they had lost. He said sometimes it's hard to look at her because of the memories.

My tears were no more. I felt like God had placed these people in my path and let them share their stories with me for a reason. It softened the blow of missing Tommy. It let me know I was not alone. I spent the rest of my night at work in Joyful thought of Tommy. I am not saying I won't cry over him again. I will probably lose many tears tomorrow, but they won't be from misery. Sadness yes, but not misery. My misery has moved on. I am upbeat most days. The tears are farther and farther apart. Instead I have found that love did not stop developing when Tommy died. I love him more now than when he was alive. Not to say I did not adore my son when he was alive, but that love is ever changing and ever growing. I didn't know that was possible, but it is. My love for my son continues to grow.

Three years ago, my tiny son came into the world. Under the circumstances, we did not know if he would live through the birth. We thought he would be weak and frail. Boy, were we WRONG! Tommy entered the world with a lusty, loud cry! He APGAR'd at 9 and 9. Tiny lungs filled with air and his heart beat in a way that sustained his body. Our son was a miracle from the moment he was conceived. For 23 months, we got to enjoy his smile, his wit, his sense of humor and his unending love.

Happy Birthday, my sweet boy. I will hold you in my heart until I can hold you in my arms again.

Another Heart Child

We have been trying to get Brandon on behavioral medications and part of that process is to have an EKG to rule out heart defects before starting him on a stimulant. In June, he had the EKG. It came back "borderline", so we repeated the test. It too came back the same way. We were instructed to take him to our family doctor, which we did.

His pediatrician will no longer be his pediatrician. Our family history of heart defects has turned out to run pretty deep in our families. On Rob's side, his grandmother and first cousin both have heart defects (mitral valve prolapse), on my side, my grandmother had an Atrial Septal Defect, and my niece and nephew have heart defects (mild pulmonary stenosis and Wolff-Parkinson-White Syndrome respectively). And then there was Tommy's complex heart defects. So having all of this information on our family history and knowing we had just lost a child to CHD, this "doctor" looks me in the face and tells me Brandon is fine because he can't hear anything through his stethoscope and that stimulants don't kill kids with heart defects. He had prescribed Brandon stimulants in the past before we knew he should have an EKG. This doctor apparently isn't from that school of thinking and I am so glad we began to treat Brandon elsewhere for his behavioral issues.

I was livid and stood my ground. It took me 20 minutes of persuasion with this man to get a referral to a pediatric cardiologist! I told him I had lost one son to heart defects and I wasn't losing another. He hemmed and hawed and finally begrudgingly gave me the referral.

Yesterday, we saw the PC. Brandon had another EKG in the office, as well as an echocardiogram and physical exam. As soon as the PC heard that Brandon's first cousin had WPW, he said to me "Thanks, I really needed to know about that!" and began to rule it out for Brandon. After 3 matching EKGs, Brandon's official heart diagnosis is Short PR Intervals. Here's a link that explains it better than I can. His PC was able to rule out WPW because he doesn't have the Delta waves associated with WPW, however, he is at a small risk to develop SVT (supraventrical Tachycardia) and we are to bring him back immediately if he ever has chest pains or heart palpitations.

Brandon's PC feels he is okay to be on stimulants or other psychotropic medications. This is a HUGE relief for us! However, because of the risk of SVT, I will be keeping a very close eye on Brandon and making sure he is seen by a trusted physician regularly. One that trusts my mommy-gut.

For the record, a stethoscope CANNOT detect all heart defects. Brandon's and my nephew's were detected by EKG. If all heart defects were detected by stethoscope then no baby would ever be sent home with the family not knowing their child was dying. But it happens all the time because its not a reliable method! If I had not already been a heart mom, I may have never fought to see a pediatric cardiologist. Things could have been very different and turned out to be much, much worse!

Bottom line, trust you gut. Babies need to have a pulse oxymeter test done before they leave the hospital and they need blood pressures checked in all four limbs. If you're pregnant, ask for a Level 2 ultrasound and be sure the technician is skilled in recognizing congenital heart defects. Tommy's heart defect was found by accident. If I had not had other issues during the pregnancy, I would not have had multiple ultrasounds. We had already had our "it's a boy" 20 week ultrasound and his heart defect was NOT detected at that time. If it weren't for the other issues and the tech in the doctor's office stumbling across it we never would have been sent for our Level 2. Tommy's heart defect would not have been detected and he would have not been born at MUSC but at a smaller hospital in the area not equipped for heart babies. More than likely, he would have died.

My complex heart baby may be in Heaven now, but because of him, his big brother was detected with a minor heart defect as well. Had I not been AWARE of heart defects and the many possible ways they hide...Oh that doctor is still burning me up!

Echocardiograms and EKGs are wonderful diagnostic tools, and a pulse oxymeter is a fantastic tool if only more doctors would realize it. For perspective, during pregnancy, a mother is tested for Down Syndrome. The occurrence for Down Syndrome is about 1 in 1000 births. Everyone has heard of Down Syndrome and probably knows someone born with it. There's posters in the OB's office about it and the doctors persuade the mothers to be tested for it during the pregnancy. Blood is drawn and sent to a lab, sometimes an amniocentesis is done. Scary stuff for a new mom! Now, understand that Congenital Heart Defects occur in 1 in 85 births! It's usually detected by a level 2 ultrasound. No blood draws, just a little gel on the belly and an hour of your time. A child with Down Syndrome will have challenges, but a child born with a heart defect could die within hours of birth. Or how about sent home "healthy" only to die days or even years later because their heart defect wasn't detected. Betcha that child "passed" the stethoscope test.

Living in the Present

For the past year, I've been able to recall memories of what I was doing the previous year. A couple of days ago, I realized it was all a blur. From September to November, my life was nothing but one dark nightmare. Tommy had just been buried and my marriage was unraveling. I was (rightly so) a complete mess. Trying to hold on to the one thing I thought at the time I had left, I was falling into a deep depression trying to save my marriage.

I remember nightmares that I had as I slept alone in our quiet house with nothing there but memories and time. I watched tv, I packed, I washed a lot of clothes. Sometimes I washed things over and over just to be doing something. Rob had moved out and I was at the darkest time of my life.

I am NOT sharing this because I want pity or for anyone to hate or blame Rob. We all grieve differently. This is about perspective. I don't remember things on a daily basis. Really it's just a big blur of bits and pieces. It was two long months of losing my sanity. Literally.

It took me a very long time to climb out of that darkness. I had thought for so long that I could not get out of it by myself and could not go on with my life without Rob, but in the end, I had to be the one to pull myself out of the despair. There's nothing harder than finding out nobody can save you but yourself. No matter who you reach to, the hands are just out of reach.

Rob and I did find each other again and our marriage is better than it has ever been. In the light of day, we realized that our grief had overcome us in two very different ways. Mine just happened to internalize itself while he ran from his grief. While I was reaching out to cling to the one link I had left to Tommy, he wanted to get as far away from me as possible because I was the one reminder of Tommy in his eyes. Grief is a strange thing.

Looking back a year ago hurts me very much. For the first time in my journey of losing my son, I am now living in the present. Looking at each day ahead of me instead of looking back with longing and saddness.

My days are no longer filled with sadness and nightmares. I sleep soundly and even have wonderful pleasant dreams. Sometimes they are even of Tommy. I no longer feel the quietness of a house full of memories surrounding me. Instead, I am surrounded with peacefulness. A year ago, I never knew quiet could be so loud. I found there is a difference between quietness and peacefulness.

I have an annoying cat that meows constantly. I have my handsome husband playing a video game three feet from me and I can hear the soft sounds of the radio in the boy's room. I won't have a nightmare tonight and tomorrow I will probably have a headache from the sounds of the boys crashing through the front door after school. And a year from now, I won't remember any of it unless I happen to look back at this blog. It's good to finally be living in the present. I will cherish my memories of Tommy and our lives with him, but I no longer have a tapping on my shoulder making me remember what I was doing with him every single day of his life the year before.

I still catch myself staring at his picture and wiping away a stray tear. I will never forget him. But I no longer have to need to cling to my past. It took me a whole year to figure out that Tommy is in my future too, that I would not forget him and I don't have to make myself relive each day of his life. His life and my life are forever intertwined. As long as I live my life and cherish his memory, he lives.

"When I Needed An Angel"

This was sent to me today and I had to share! I have included the song and the lyrics as well.


Dear Donate Life Community,



We are delighted to announce that All-4-One, the Grammy Award-winning R&B/pop group renowned for their 1994 classic “I Swear,” has released a new song inspired by organ donors and transplant recipients, “When I Needed An Angel.” The song, from their forthcoming album No Regrets, is now available on iTunes, as you will read in the attached press release.



The group wrote “When I Needed An Angel” after being touched by inspirational stories of people affected by organ and tissue donation. We are truly honored to have made this connection and are certain that once you hear the song it will touch your heart and you will realize that All-4-One has truly delivered an angel to the Donate Life mission!



The members of All-4-One – Jamie, Delious, Tony and Alfred – are proud to support the Donate Life community. “It means the world to us to be able to contribute something outside of our constant prayers to help people receive an extension of life. Every download of ‘When I Needed An Angel’ will inspire someone to become a donor and help the more than 103,000 people now waiting for a life-saving organ transplant.”



All-4-One will generously contribute $.40 cents of each download from iTunes to support our collaborative efforts to inspire the nation to donate life! We encourage all of you to inform your community of this opportunity to support our life-saving mission!



To download the song, go to iTunes and enter “When I Needed An Angel” in the search field. To listen to the song in its entirety: http://www.youtube.com/watch?v=bJ1Lm6Yik4Q






what can i say,
when i can’t find the words to possibly explain
what i’m feeling inside
i tried to believe,
my whole kept faith everyday that passed me by
and then you came in my life
and now i am living proof
of what the gift of pure love can do
when i needed an angel
here was you who made the sacrifice
just in the nick of time
when i needed an angel
i didn’t have to look to the sky
cos you made me realize
that you were right here all the time
(right here all the time)
right here all the time
sometimes i cry
when i think about everything you’ve done for me
and i still can’t believe
that i can live my life
every breath i take i take for you and me
that’s a promise i’ll keep
and each night i think of you
and how your gift of love pulled me through
when i needed an angel
here was you who made the sacrifice
just in the nick of time
when i needed an angel
i didn’t have to look to the sky
cos you made me realize
you were right here all the time
(right here all the time)
right here all the time
baby one day everyone will say
that i wanna be somebody’s angel
and i will tell the world (tell the world)
about this miracle
every moment i’m awake
i’ll give the love you gave
ohhh angel..
when i needed an angel
here was you who made the sacrifice
just in the nick of time
when i needed an angel
i didn’t have to look to the sky
cos you made me realize
that you were right here all the time
you were right here all the time

Day One...again

What a year. What a difference. Yesterday started very early for me. I stayed up all night long while a close family friend was in labor. She is in New Jersey, her mother is in South Carolina, and her aunt and grandmother are here in KY with me. Between email, texts and instant messages, we kept each other up to date on her status. It did not escape us that the baby was born one year to the day of Tommy's passing. Tommy must have had some last minute instructions for little Sarie!

After she was finally born at 3:59 am and I had gotten a picture and the word that all was well, I decided to take a short nap before getting the kids up for school. Guess who didn't wake up? It worked out okay because we had planned to pick them up early anyway because of doctor's appointments. Gosh, it all sounds so normal doesn't it?

The appointments were actually for Brandon mostly. I took him to his NP for prescriptions for his behavioral issues. We had done an EKG on him in June and she told me that there was a blip on the EKG so she wanted it repeated before prescribing a stimulant. With the family history of heart defects, it really isn't a good idea for Brandon to be on medication without knowing the state of his heart. We got orders and went to the hospital for another EKG.

We had the technician send preliminaries back to the NP. If all was well, then Brandon would get a prescription for a stimulant. Back to the NP's office to wait. A few minutes later, her nurse was handing me the prescription. Yay! I took it to Walmart to have it filled, but since we are transitioning from one type of insurance to another and are not covered at this time (even though the new insurance said it is processing and will backdate for 3 months) I was told I would need to pay out of pocket for the prescription. $128.00! Called the NP back and was told they would write a prescription for short term Ritalin which was on the $4 dollar plan at Walmart just so he could start on something. We were getting short on time by then, so I opted to wait until Friday to pick up the new prescription.

We stopped to buy bubbles. LOTS of bubbles. Then we stopped to have a late lunch. I didn't have time to sit and mope. After lunch, we took our bubbles to the cemetery and blew bubbles for Tommy. We scheduled a time to blow bubbles at 7pm with everyone across the country in remembrance of Tommy, but we all wanted to visit his grave, and it didn't seem right not to blow a few bubbles there, so we did.

We then got on the road to head to Louisville to meet Rob's family. His grandmother is in a physical rehab facility recovering from heart surgery. Most of Rob's family was going to meet us there to blow bubbles. We were on our way when I got a frantic phone call from the NP's office. Her nurse told me NOT to have the prescription filled because when they got the official report on Brandon's EKG, the blip was still there! They aren't cardiologists so they can't tell me exactly what is going on, but the notes written by the doctor that read the EKG say it is a "borderline EKG with sinus arrhythmia". Not a clue what that means for Brandon. Could be just typical for him, could be something we need to watch. At any rate, I'm calling the doctor's office this morning for an appointment.

We made it to Louisville and had a nice visit with everyone. We went down to the courtyard to blow bubbles. It was amazing seeing them fill the air. I took lots of pictures. I think final count was 90! My mother in law found some sort of bubbles that didn't pop. An hour later, the bubbles were still clinging to the shrubs, the sidewalk and the wall! It was amazing!

After bubbles, Rob, the boys and I made our way to McDonald's for ice cream, then home. Once the boys were in bed, I had time to read all of the beautiful messages left for us online. So many people blew bubbles for Tommy! Rob and I decided to watch a show on Netflix.

I had my first and only surreal moment of the day.

Last year, after we came home to SC after the funeral without the boys, my marriage fell to pieces. Rob moved out after we got home. I was truly completely alone. I washed a lot of laundry and watched a lot of tv at night. One of the things I started watching was a new series on SciFi called "Sanctuary". I always thought Rob would like it, but I could barely get him to talk to me, much less snuggle up and watch a good tv show with me. Guess what series we are now watching on Netflix. Together. "Sanctuary". Only this time around, we're snuggled together on the couch after a day of celebrating our beautiful son together.

In the past year, we have gone from losing the most precious thing in our lives, losing our home, our income, our children and our marriage to having a safe, stable home, a new job, happy kids and a marriage that is blessed and strong. Life is so different! I would love to say "my life is so much better than last year", and it is, but it feels like I'd be betraying Tommy's memory. I'd give up my last breath to be able to hold him again.

This time, a year ago, my world was falling apart. My arms hurt from not holding Tommy. My eyes were sore from crying and my heart was broken. I woke up empty and alone. This morning, I woke up in my husband's loving arms and got up and put my kids on the school bus. They giggled and waved as they went out the door, telling me to have a good day. I think I will.

It has taken me a year, but I have come to learn that Tommy never left me. His body was weak and died, but Tommy has been here all along. I still cry. I've finally come to the acceptance stage of my grief. That's the clinical terminology. I will never "accept" that my son died. I will acknowledge it and admit it, but it will NEVER be okay. My son is an angel because he was born too soon with birth defects his doctors could not fix. There's no cure for heart defects. Heart surgery is a band aid. We need more.

For Tommy and Seamus and Gracie and Hope and Annabelle, all the other angels that have lost their fights.

For all the heart kids too numerous to name here.

My arms are empty again on day one of year two. Life goes on. Sadly, life goes on. A few weeks ago, I thought for sure that I would spend the day locked in my room under the covers bawling my eyes out. I surprised myself. Not to say tomorrow won't look like a good day to do so, but yesterday wasn't. I plan on keeping Tommy's memory alive and strong. He's always with me as I said before and the more I share him, the brighter that light inside of me that is him will shine. When you see me smiling, it isn't because I'm just happy. It's because a little boy gave me the HONOR of being his mommy for 22 months and 25 days.

Remembering Tommy~ Sept 25, 2006-Aug 20, 2008

Make photo slide shows at www.OneTrueMedia.com

The Heart

Tonight I received an email from my friend, Sierra. I've seen this before, but today, on the eve of the one year anniversary of Tommy's death (8/20), it hit me right in the gut. I bawled my eyes out. Thank you, Sierra for sending it to me. It was pain and comfort all at the same time.



The
Heart



"Tomorrow morning," the
surgeon began,
"I'll open up your
heart...."


"You'll find Jesus there,"
the boy
interrupted.


the surgeon
looked up, annoyed "I'll
cut your heart
open," he continued,
to see how much damage
has been
done..."


"but when you
open up my heart, you'll
find Jesus in
there," said the boy.


The surgeon
looked to the parents, who
Sat quietly. "When
I see how much
damage has been done, I'll sew
your
heart and chest back up, and I'll
plan
what to do next."


"But you'll
find Jesus in my heart. The
Bible says He
lives there. The
hymns all say He lives
there. You'll
find Him in my
heart."

The surgeon had had enough. "I'll
tell
you what I'll find in your
heart.
I'll find damaged muscle, low
blood
supply, and weakened vessels.
And
I'll find out if I can make you
well."

"You'll find Jesus there too. He
lives
there."

The surgeon
left.

The surgeon sat in his office,
recording his notes from the
surgery,
"....damaged aorta, damaged pulmonary
vein, widespread muscle
degeneration.
No
hope for transplant, no hope for cure.
Therapy:
painkillers and bed rest.
Prognosis:
here he paused, "death within one
year."


He stopped the recorder, but
there was
more to be said. "Why?" he asked
aloud.
"Why did You do this? You've
put
him here; You've put him in this pain;
and You've cursed him to an
early death.
Why?"

The Lord answered and said, "The
boy,
my lamb, was not meant for your
flock
for long, for he is a part of My
flock, and
will forever be.
Here, in My flock, he will
feel no pain, and will be comforted as
you
cannot imagine.

His parents will
one day join him here,
and they will know
peace, and
My flock will continue to
grow.."

The surgeon's tears were hot, but
his
anger was hotter. "You created
that
boy, and You created that heart.
He'll
be dead in months. Why?"

The
Lord answered, "The boy, My lamb,
shall
return to My flock, for He has
done his duty:
I did not put My lamb
with your flock to lose
him, but to retrieve another lost lamb."
The
surgeon wept...
The
surgeon sat
beside the boy's bed; the
boy's
parents sat across from him. The boy
awoke and whispered, "Did you cut
open
my
heart?"

"Yes," said the surgeon.
"What
did you find?" asked the boy.

"I found
Jesus there," said the
surgeon.

Author
Unknown

Happy Birthday to Me!

I dreaded my birthday for a whole year. Last year was so miserable that I never wanted another birthday again. But I am loved and many, many people wanted to see me have a happy birthday. Starting at midnight!

My first birthday wish came from my mother in law, who called me at midnight to sing me happy birthday. I had just finished working a 13 hour shift and Rob was driving us home. When I got home, I logged onto Facebook and found a few birthday messages. By the time my birthday was over, I would have about 45 messages! Wow!

My sister called me and sang me happy birthday as well as my mother in law (again) and her sister later that day. My mom is just as busy as I am, so she left my birthday card at work for me. I get a kick out of the fact the card is called "Ode to a Busy Person", LOL! I get my work ethic from her. She's the ultimate "do whatever it takes" mom!

Rob and I went out for lunch. We went to a local Mexican restaurant here in town and had lunch special fajitas! Yummy and low carb! I ended my day by working a short shift at work. I told Rob I wanted birthday cake, but he thought I was joking because I have been such a stickler on this diet about low carbs. I ended up getting cupcakes on the way home and made him sing me happy birthday while I ate them.

I have to say the best part of my birthday was hearing Rob tell me happy birthday and that he loved me. I've kept a lot of things private, but last year on my birthday I didn't hear either of those things from him. I am so thankful for the changes in my marriage. I could have went the whole day without another birthday wish after hearing one from him. It really did put me on cloud nine.

Grief..and Peace

I have been asked to attend a Women's Revival Saturday morning. The topic is dealing with losing your child and grief. The lady that invited me, Lisa, lost her children 4 years ago in a fire. Yet, she reaches out to me and tells me that what I have gone through is worse. Much worse. In our talks this past week, she has asked me to speak tomorrow as well. She thinks God will speak through me, hoping to help someone there that needs to be spoken to. I have agreed.

I am conflicted by Lisa telling me that what I have gone through is worse. Losing a child is losing a child. She says because Tommy was sick and we knew he would be born sick that essentially we grieved from the moment he was born. I guess she is right. I never looked at it that way before, but it makes sense. I grieved a healthy pregnancy that I did not have. I grieved not having my perfect, healthy child. I grieved unmet milestones and delays. I just never knew that was what I was feeling.

I am really looking forward to tomorrow. My sorrow is changing. It no longer holds me down and drags the tears out of me. My sorrow is beginning to turn into positive things. If talking about surviving Tommy's death helps ONE person tomorrow, then it will all have been worth the struggle.

I never thought I would see this day. The day God let my heart start to heal and allow me to say that I am at peace. I will never stop loving my little boy, but I've moved into a place where I can love him even more, if that were ever possible. Tommy has moved into a special place in my heart and is always near. He allows me to reach out to those hurting and share his love.

The sweet little boy who lived inside of my body and was given life by my life has done the same for me. His life has given me MY life. A new purpose, a hope, and reason to live again. His memory will help me reach out to those hurting and show them what love is. Tommy was perfect love. Tomorrow, I will use that love to let the Spirit guide my words. As long as he lives in my heart, Tommy lives on forever.

Random Thoughts

Coming into August, I was nervous I would be a wreck every single day, but strangely, life has been somewhat normal. My friend Sheila came down from Indiana for a couple of days and we went to visit Tommy's grave. I guess it is becoming more routine for us, because for once, I didn't cry and the boys laughed as they picked wildflowers to scatter on his grave. Sheila did cry, but it was reality for her. She'd never been.

What else has been going on with us? The boys started school on Tuesday and both of them are loving it.

Rob's grandmother had her heart repaired about 3 weeks ago and is finally well enough to come out of sedation. What a great blessing! It was very touch and go in the beginning.

I managed to sprain my left wrist at work on Tuesday night. Bummer. It really hurts, but I am keeping it wrapped and as long as I don't move it too much the wrong way, it's fine. It hurts a lot less today than it did yesterday, so I am hoping by the end of the weekend, all will be well.

Rob and I, along with some friends started the Atkins diet on Tuesday as well. After the first two days, Rob and I weren't so sure that a high fat diet was good for our hearts, so we have modified it to our needs. Lean meats most of the time and low carb veggies. No butter, salt, fat, mayo or grease. We do indulge in bacon occasionally, but other than that, everything has been lean. I've lost 5 pounds in 3 days. I know, it's all "water weight", but who cares...I've never lost 5 pound in 3 days on any other diet. My goal is to be somewhere in the 135 to 150 range. The scales this morning said 212. I have a long way to go! I am considered to be in a pre-diabetic state, so this has double the health benefits for me by cutting out the carbs. The best part of this diet is that working in a convenience store we have a plethora of pork rinds. LOVE them and they're zero carb. Any time I get the munchies, I grab a bag. Now to find out where we keep the zero carb chocolate chip cookies.

I have a few things coming up in the next two weeks. Matthew has shots next week, I have been invited to hear a speaker on losing a child, my birthday, and finally, the BIG day. The one where I plan to hide in my room and cry all day, but maybe I will surprise myself.

Tommy was joy. Instead of feeling sad and sorry for myself that day, I should make his memory a thing of joy. Yes, there will be tears, I can't stop the tears, but I CAN stop getting prepared to be sad. Tommy's life is worth celebrating every moment. Maybe this is acceptance. Maybe it's denial. Either way, it is not pain today. It might be tomorrow, but for now, I will take feeling good and feeling myself surrounded by Tommy's love.

Tommy lives on!

Last year, I was contacted by Passey-Muir about using Tommy's videos on their website. I am pleased to announce that the website has been updated and our sweet Tommy's memory has been honored on their website.

I always said Tommy was famous. He's going to live on through the website and continue to help other families. I am touched and honored that Passey Muir chose Tommy to represent them.

Click Here to see Tommy in action.

Who Have I Become?

I am still struggling with who I have become. Or should I say, I am no longer who I used to be. I was Tommy's mom. Mom to a superhero with big blue eyes and a personality bigger than whatever room he was in. I was caregiver, medical supervisor, and advocate for my son. My life was Tommy. Every moment consumed me and I lived for each of those moments. He was my calling in life. He was what I was sent to this Earth to do. I was good at what I did.

Together we fought for each milestone. Things most parents take for granted. Tommy was 7 months old before he fell asleep in my arms for the first time. I have shared most of his ups and downs about his physical disabilities, but there was so much more that Tommy had to fight for. Tommy had Sensory Integration Disorder. In other words, all touch was bad touch for him because he had only known a hospital bed and pokes and prods for the first 79 days of his life. He self comforted and did not bond with his mother's touch. My touch.

After his first heart surgery, I couldn't hold him for several weeks. Those were critical newborn weeks. When I finally did hold him, he arched his back and hyperventilated. I was told he was adjusting to his trach, he had gas, blah, blah, blah. I knew better. My baby didn't want to be held. ENT looked at him, respiratory looked at him, cardiology looked at him, all scratching their heads. I took him to his pediatrician and told them my son had SID. Mild concern. I picked Tommy up and put him in the doctor's arms. He turned blue and arched his back. I had orders for Occupational Therapy in my hand that day.

We worked with an OT and PT (physical therapist) once a week each starting at 4 months old. We learned tricks to help Tommy's body learn that touch was good. Joint compressions were done as well as brushing his entire body with a surgical nail brush. Long, straight even strokes. Every day, I tried to hold him but it became very clear that he was not tolerating it. I bought an infant carrier and carried him, but with all of his wires and hardware poking out it was hard accomplish much. Plus, he wasn't too crazy about it.

Finally, at 5 months old we were rewarded with his first magical smile. I happened to have him propped up on the couch taking pictures when it happened and I caught it on camera. Around the same time, we were able to introduce color and sound into his life. Up until that point, everything was overstimulating. His hospital room had been a quiet, sterile place. Not a lively, colorful place with noise and bright shiny things. It was very much a one day at a time thing. Every day I was on the floor with him trying to get eye contact. Trying to hold him for a few more seconds, trying to let him learn that my voice was soothing and my touch was comfort.

It was a very, very happy day when he let me hold him that Sunday morning when he was 7 months old. I rocked him to sleep for the very first time. Magical. Tommy had SID issues all the way up until his death. He had to be dressed in a onesie every day up until about 3 months before he died. If not, he squirmed and stressed out from the bed touching his skin. He didn't like certain textures and only had 3 tub baths in his life. All ended up in failure. The fact he would even touch water with his hands was monumental. Sponged bathed his entire life. We had only just moved to tub bathing when he was hospitalized the last time.

Tommy's OT worked hard to get him to learn new touch. She brought rice and beans to the house to stick his hands in. She bribed him with toys he liked shoved into them. Even then, he would only stick one little hand in and jerk back. The other hand, firmly planted on the back of his neck. If Tommy rubbed the back of his neck, he was unsure of the situation..proceed with caution. If the backs of his hands went to his eyes, that was the end of the day. Tommy's sign for STOP everything, I am overstimulated, go away now! We pushed him a little bit further every week, but he always ran the show.

Tommy's care wasn't just feeding pumps, medications, monitoring his color, and suctioning his trach. Sure there was all of that, along with diapers, baths, nap times, doctors appointments, surgery, procedures, and schedules. It was getting on the floor every single day to stretch his joints, touch his skin, help him roll over, sit up, open his mouth, stretch, reach, touch, feel.... We didn't go outside because he didn't like the wind on his skin and FORGET the grass! That was to be our next goal.

I miss him so much right now. My 24/7 routine of his care has been replaced with a job outside the home. The older boys have gone from homeschooling to regular school. They've gone to day camp all summer long. I sleep a lot now. I think that is the biggest change. I went from 3 hours of sleep to a full 8 or 9 hours. After 3 years of not sleeping, I guess I have a lot of catching up to do. I miss the UPS man and the DME bringing our supplies. I miss having 5 doctors on speed dial. I miss knowing the security guards at the hospital knew me. I miss lugging a 70 pound stroller and 3 oxygen tanks. I miss compounding medications and washing syringes.

Most of all, I miss being his mom. Being Tommy's Mommy WAS my life. It was who I was. It defined my purpose in life. I feel so empty and unmotivated these days. Sure, I am happy. I have a job I like, my kids are doing well, my marriage is healthy and alive. But I'm not defined as Tommy's Mommy anymore. I don't know who I am. I don't stand out anymore. I'm just a mom that carries the burden of loss on my heart every single day. Quietly. On the inside where nobody can see.

As much as I wanted Tommy to be well and not need all of the medical care that he did, I would take it all back. No matter what we had to endure. Anything. ANYTHING is better than his death. The hard work was worth every reward. I feel like I have been dropped from a cliff. Like I studied for 3 years to pass an exam only to be given a test on a different subject and failing. I get the feeling of "why did I work so hard only to have it all taken away?". It's like having to relearn life all over again. Except there is no sensory technique for a broken heart and grief. I can't wear special clothes and learn to feel better. I can't massage my joints and learn to feel again. There's nobody to carry me around and cuddle me when I want to cry.

I just have to take it one day at a time. Learning to live my life as mom to an angel. Mom to an eternally beautiful child. I will always be Tommy's Mommy. I just don't have anything to show for it except my memories and my tears.

The Darkness

Today marks one year of the end of the happiest days of my life. In 48 hours, my kids will be snatched from my home, Tommy will be hospitalized and will never see home again. I have a lot of anger and pain that I need to let out, but don't have the strength to let it come to the surface. I am hoping to begin dealing with the countdown to the one year anniversary of Tommy's death.

The days are slipping past me unnoticed. We have found a new beginning as a family, but there will forever be something missing. I don't know what subjects will pour from my heart over the next few weeks, but know, they ARE from my heart.

Today, right now, at this very moment life if good. Rob is napping, the boys are playing a computer game together and enjoying each other's company. I have my feet up for a little while because I will be standing for the rest of the evening. I am tired today, because it is my Friday. I am fortunate enough that most of days I do not want to remember happen to fall on my days off. Like tomorrow. I will spend a moment remembering those last hugs and snuggles as I put Tommy to bed for the last time in his very own bed. Had I known, I would have never washed his sheets. I wish I could smell his little head one more time. Hear his laugh. Feel his little hugs around my neck.

July 4th

This day is so emotional for me. Last year, I made a point of making a special memory with Tommy. He had come so far! The previous year, he was laying in a hospital bed recovering from open heart surgery. I was recovering from the fact we had been making funeral arrangements because we were not sure his body could tolerate the surgery and we could lose him. I watched the fireworks from his hospital room window and had my own special Independance Day. My son had lived through his surgery!

Last year was the first time Tommy would see fireworks. I was so excited! I could barely contain myself and could not wait until the sun went down. As soon as I hear them going off, I got Tommy into his stroller with all of his gear (suction machine, oxygen, emergency supplies) and he, Brandon and I went for a walk in search of a good spot to watch.

Brandon was thrilled and still talks about it all the time. Tommy was a bit underwhelmed. I was disappointed that he didn't ooh and aah (or in his case, wiggle his little body in excitement, clap and point). But, we were outside, enjoying the muggy July weather and watching fireworks. Not stuck in a hospital. It was the most amazing feeling! I don't think I will ever be able to watch fireworks again without crying.

I leave you with a photo, taken July 6, 2008. My sweet little guy finally had the upper body strength to balance on his horsey. Nine days later, he would be hospitalized and never come home again.

What a Dream!

Last night, I had the most realistic dream about Tommy ever. It was also the longest! I dreamed that life had gone on for Tommy and he had aged to what he should be now, which is almost 3. I dreamed he still had the trach, but was otherwise developing normally, including taking his first steps and talking! It was amazing. We laughed, played, went to events together and even snuggled up in bed for a nap together. I loved holding him in my arms again. I loved chasing after him as he ran from me, laughing, even if I was lugging a suction machine! I loved catching him and then rocking him in my arms as he looked up at me with those beautiful eyes.

Life with Tommy when he was alive was a joy every single day. No matter the hard work to keep him alive or the hassles to get the care he deserved, every moment was filled with happiness. He was a happy baby. I wish so bad that the world could have met him individually to know what a happy child he was. He never knew a moment of despair, just love.

To hold him in my dreams is such a blessing and a wonderful gift from God. To see my little boy walking is a miracle. I love you Tommy. Forever and ever.

Family Time

It was another long, but fun and productive day for us. Our van broke down and we were able to get it out of the shop this afternoon. The catalytic converter stopped up and the van would not start. On the way home from picking it up, we stopped by the cemetery. It had been a few weeks since we'd been out there. I was not having a bad day and I was feeling rather cheerful, but the moment his grave came into sight, I had tears welling up. I sat on the ground, remembering seeing him in his tiny casket and knowing he was right there, next to me. I had to fight the urge to start digging with my hands to get to him so I could hold him again. I had myself a good cry and it was time to leave.

As we left, we passed by a place that Rob and I had read about that had a hidden geocache. We stopped and were able to find it. It was our first find. It did wonders to cheer me up and we decided to pick up the boys and take them out looking for another one.

We ended up in the woods looking for the cache, but we didn't know how to use the GPS program in our phone so we couldn't find it. After an hour of hiking in the woods with the boys (and having a great time) we decided to call it a day. Rob and I figured we could do some research and try again another day.

Matthew and Brandon asked to go the cemetery as well after finding out we had gone earlier. We took them and we sat on the ground by his grave. Brandon took off his shoes and asked if he could walk on the dirt and I let him. As we talked about Tommy, he crouched down and picked at the dirt in frustration. I knew what he was thinking. The same thing I had earlier in the day. He said he wanted to get Tommy out. I told him even if we could, it would just be his body and the thing that made Tommy alive was in Heaven. Brandon then drew a heart in the dirt and asked me how to spell "I love you", so we used our fingers to write "I love you" in the dirt and draw hearts. When it was time to leave, he ran over and kissed the marker and told Tommy he loved him.

Matthew had placed a very large shell on Tommy's grave a few weeks ago. We told him he could go ahead and take it home because we found out the HARD way that any mementos that we leave on Tommy's grave get thrown away by the groundskeepers when they mow. All of the beautiful things that meant so much to me that people had left are all gone. Makes me very sad. Until we can get him a headstone to put the flowers on, everything will just get thrown away. I don't see a headstone any time soon because we have not had a donation to his funeral expenses since Christmas. We still owe a substantial amount to the funeral home. Anyone willing to donate to that fund can donate by either using the link on this page or by contacting Barlow's Funeral Home here in Bardstown, KY directly.

Now back on topic...The boys can't wait to go geocaching again. We ended our day with ice cream cones and the boys watching the moths dancing around our porch light as the sun set. They are now soundly sleeping in their beds. They have day camp for the rest of the summer. I'm sure they will be going in tomorrow talking all about walking in the woods, the GIANT bug we found and looking for treasure. Some photos of our day. Excuse the quality, nobody seemed to want to stand still long enough for a picture.


Matthew in the woods


Looking for the cache


Up in a tree


Scared to get down from the tree!


Big Brother to the rescue!


Brandon was very happy to be back on the ground.

The female Eastern Hercules Beetle we found. Biggest beetle in America and we find one alive by accident. Yes, that is a pen beside it.