Thursday, December 16, 2010

Counting Down The Days

Christmas is almost here.  For weeks now, I've been a little "Bah, Humbug" about the whole thing, but I'm starting to warm up.

We're in the same boat as most of the country right now. Flat broke with kids expecting gifts under the tree. I have been so depressed and stressed out. Most days I would just rather skip Christmas all together, but I can't do that to my family. The gifts will be smaller, but with more meaning. They'll come from a place in the heart like they usually do, but when the funds are tighter, even the smallest gift seems like a treasure.

We are so blessed to just have each other. Life keeps hitting us in the gut with everything its got and we still keep standing back up again. We are survivors.

Tuesday, November 30, 2010

Don't Leave Me

How long before your memory fades from my mind? How long before you fade from the mind of others? You stay alive in my heart, but what if I start to forget you? Please don't leave me, sweet boy. Let me forever remember the smell of your head and the look of mischief in your eyes when you smiled.

Let me have memories of you laughing and playing. Never let me forget the pain we went through.

So many have gone before, and and so many more have joined you in Heaven. I hate to hear someone else has earned their wings, but it's happening over and over again. It hurts.

I miss you. I love you.

Thursday, November 25, 2010


Today was a most thankful day. I'm thankful for being able to watch the Macy's parade with my boys, even if I fell asleep after the 4th balloon. I'm thankful for two families that love me and love my boys with all of their hearts. I'm thankful I have a warm bed to sleep and a roof over my head to keep out the rain.

I'm thankful I can complain my feet hurt after working 10 hour shifts, because I HAVE a job to be thankful for. I'm thankful for my cats and that they are good mousers. That's really important when living in the sticks.

I'm thankful for friends that don't care if the house is a little messy or if I don't have anything to offer them out of the fridge. I'm thankful to have Internet access to be able to keep up with the friends I can't be with. I'm thankful for loud music that keeps me motivated to work.

I'm thankful for my kids. My beautiful, beautiful kids. I'm thankful for their fathers that gave them to me. I'm thankful for my health and the health of the ones I love.

I'm thankful for justice for those that truly deserve it. I'm thankful for peace for those that deserve it even more.

I'm thankful I am loved. Thankful I am blessed.

Thursday, November 4, 2010

Life Update...And Being Thankful

Life has been life lately, I guess. We all have our own issues that we deal with. Halloween was celebrated a day late for us because of my work schedule and because the day before I attended a beautiful wedding and our entire family was just exhausted. So on Monday night, we carved pumpkins with grandma and had a few pieces of candy. I've promised them each their own bag when I go grocery shopping and can buy it on clearance.

I spend most of my days the same. I get up at 7 and put the boys on the bus and then for about an hour or two I have some quiet time with my cats. I catch up on my email, blog, maybe watch an episode of "Glee". Around 9 I head to bed and sleep until around 3. The boys get home at 4, then I'm off to work. It's about a 30 minute drive. They hang out with dad for the evening while I work, then sometime around midnight, I'm back on the road for home, getting home close to 1 in the morning. I pour the kids in bed and start a load of laundry. While it's washing, I cook dinner and watch something on Netflix while I update Facebook. Around 3, I toss the clothes in the dryer on my way to bed. Three hours later, I'm back up again to put the kids on the bus and start over. It's a ridiculous schedule, but we do what we gotta do.

The holidays are coming up. Its a weird time for me. Growing up, Thanksgiving was all about the parade, having family over, and eating for days. When I became an adult, it stayed pretty much the same until Tommy was born. The next two Thanksgivings would both be in the hospital. The first one recovering from open heart surgery and complications, the second one while he battled the flu for two weeks. The next year my life would be upside down. I was back in KY with my family, but without my baby boy. I had so much to be thankful for, and yet, so much reason not to care. I went through the motions, but it stung watching the country "be thankful" when all I wanted was to hold my baby, even if it meant in a hospital.

Last year was a little better. I missed the parade for the first time since I can't remember. I guess my priorities have changed. I shed the old me and was reborn. This has been a year of self discovery for me. I'm learning to be thankful again. Mostly, I've been learning to be myself.

A few months ago, I started wearing tee shirts with silly sayings on them when I went to work. People love to come in and see what shirt I will be wearing that day. I also have pink streaks in my hair. They're growing out, so I plan to redo them in the near future. I do these things because life is too short not to enjoy every moment. Every emotion I have now seems intensified. I laugh louder, cry bigger tears, fight harder, love stronger. The way I live my life is a tribute to my son. If he could spend his entire life celebrating the JOY, then so can I.

If I am thankful for anything, I am thankful for his life. Thankful I was (and will always be) his mom. Thankful for the joy, the love, the tears and the strength he brought to my life in his short time with me on this Earth. Thankful he taught me to be who I am and to live life with no regrets, just lessons learned. To know that tears are cleansing, and that he's always with me. Thankful for the perfect love a little boy named Tommy taught me and the rest of the world.

Wednesday, October 20, 2010

Looking Back

I have two medium sized plastic totes in my shed. They're full of Tommy's things. Mostly toys. Today I decided on a whim to go out there and open them.

As I dug through the toys, wondering who would enjoy them, I felt myself get very possessive. I didn't want anyone touching my baby's things. Those were his memories all over those toys. His drool and trach secretion stains. The only thing I thought I might be able to part with were his blankets. I'm thinking of taking them out and donating them. I'm not sure when yet.

I found the shirt I was wearing when I last held him alive. And gone. I wore it for 3 days after that, not wanting to change out of the clothes that last touched him. I have never washed it. I smooshed it back down into the bottom of the tote.

I found nursing notes, paperwork, and books. I took those out to read. I have his hospital records for the first month of his life, up until the day before his first heart surgery. We got them for his SSI appointment when we first applied and they gave us a copy. I learned some new things. I have read them before as a new heart mom, but now that I'm a little more seasoned, things made more sense. I have the reports from his birth and his very first echo. Very cool to read. Never could remember how long he was. 42 cm. That's just 16 1/2 inches.

I learned that his APGAR was a 9 and 9, but only because he wasn't pink. I learned he was born with SATS of only 68%, but within 30 minutes, he was up to 80%. I learned what the doctors found on their first echo, including the fact he had a PFO. I never knew that. I guess in the grand scheme of things, another hole in his heart wasn't that big of an issue when he only had technically one ventricle anyway.

I also found a lot missing. Most of the paperwork only shows his heart diagnosis and his cricopharyngeal dysfunction diagnosis. No notes about the time he stopped breathing in the NNICU while I watched a crowd swarm in to save him. Nothing about his frequent desats when we tried car seat tests. No nursing notes from the Special Care nursery about his day to day life. I wish I had those.

The only thing I found ironic was in the notes from his birth, it says he had a vigorous cry. I will never forget that sound. I would never hear him cry like that again. Sure he would whimper and laugh with his PMV, but never again would he cry and cry big lusty, lung filling cries. Mostly because he didn't need to. He wasn't unhappy. I guess people would say I am lucky to have brought home a baby that automatically slept through the night and never cried or fussed. But at what cost? He was fed by a pump, breathed with a trach, and monitored 24/7. He was never a typical baby. For that I will always mourn.

I don't know what I will do with his things in the shed. Call me selfish, but I don't think anyone else in the world is deserving enough to touch my son's toys. Maybe someday I will have grand kids and will think differently, but for now, they're safe and sound.

A box of memories that are mine and mine alone.

Growing up the oldest of 6 kids I never had much that was mine alone. I don't think I like it very much.

Saturday, September 25, 2010

Beautiful, Beautiful Dream

Today is Tommy's birthday. He would have been 4 years old. I can't believe it. I have a 4 year old. Last night, I had a wonderful dream. I haven't had a dream about him in several months and I have missed him.

In the dream, I was in a school/hospital. (It was a dream...I kept going back and forth) Somehow, I ended up seeing an old teacher of mine and she was telling me that she had gotten pictures of Tommy that someone at the hospital had taken and given to her. Would I like them? I was overwhelmed! Pictures of Tommy that I'd never seen! It gave me the idea to head to the hospital and see what I could find.

I ended up sitting in a room with opaque windows so I couldn't see the patients, but I knew the room was a very small ICU with babies recovering from heart surgery. I didn't know any of the nurses that were coming and going, but I finally got up my nerve to tell them that my sweet boy had been their patient. They remembered his name and gave me more pictures that they had.

After I left, I went to sit in chair in a waiting area to gather my thoughts. I looked  beside me and Tommy was reaching up for me. I scooped up my little guy and got the sweetest hugs ever. I woke up remembering carrying him.

Friday, September 24, 2010

Big Ernie

My second daddy died today. We called him Big Ernie. I met him when I was in Jr. High. He was my best friend's dad. I think I was at their house more than my own at times. I grew up with his sarcasm, his tough outer exterior and softy interior. He cussed in front of me and watched tv shows like "Silk Stalkings". Complete opposite of my own dad.

He's had a bad heart since I met him. He lost a ton of weight in the first year he was a part of my life. "Mama" made sure he ate right. I don't know how many times he salivated over our food as she served him his portion and he said "that's IT?". He would shrug his shoulders and dig in. He worked hard for his family and retired a few years ago from Civil Service.

He was hard on us when we screwed up. He had THE LOOK. Many have imitated, but no one NO ONE will ever do it the way he did. All he had to do was look over the rim of his glasses and hold up his finger. He never had to say a word. We froze in fear as kids (and as adults a few times too) and so did all of our kids when they went to visit Papa.

We called him "Old Man" as a joke. He was far from old, and always young at heart. He wore his hair long and gray. Longer than mine. He appreciated a good joke, the dirtier the better and told them often. As an older teen, he was my go-to guy for a good joke. He read Playboy. He loved a beautiful firearm and was an NRA instructor.

He was fair. Family arguments were met with him throwing up his hands in the air and the call of "I'm going to bed", and when we stayed up to late, he came down the hall and told us it was time to "pack it in".

I miss him. So many memories of a man that has been a part of my life constantly for the past 25 years.

Rest in peace, Ernie. I love you and you'll always be in my heart.

Thursday, September 23, 2010

I Saw An Angel Today

Today, I was walking around a second hand store, browsing while waiting for Brandon to finish a class with 4H. I heard a song and wanted to walk away, but the person I was with asked me to follow them. This was the song playing.  It's one of two songs that will bring tears to my eyes and bring Tommy to my thoughts. As I stood there, holding back my tears, I looked up and saw right in front of me a picture of Nemo on a child's place mat. It couldn't be! As the song ended, we continued walking around. My friend noticed a KISS 45. It was "I Was Made For Loving You" and written on the cover was my name. Weird. As we rounded the corner, I was thinking of how to tell my friend about all of these coincidences when a statue caught my eye. It was a fairy. Anyone that knows me knows I LOVE fairies. I picked it up to get a closer look. It had one of those brass nameplates on the front.

It said "Heaven Sent".

That was too much! I could feel the love around me. I've not been having the best of days lately. I needed to "hear" from my sweet boy. Saturday is his birthday. He would have been 4. I've tried not to dwell on him and his memory so much for the past couple of weeks. Remembering him on his Angelversary was just a month ago. I guess there's good and bad that the dates are so close together, but once I've gotten past them and my mind settles down from dealing with the pain, I start gearing myself up for CHD Awareness. I don't know how much I can do this coming year.

I've really pulled away from keeping up with CHD families. Or should I say, following updates. It's all so much. The pain, the doctors appointments, the surgeries, the recovery. Death. The memories never go away. I don't want to say that I'm ignoring Tommy's memory, but I'm trying to dwell less on him in my mind. The love is always there, the fond memories are there. I just can't keep watching him die over and over in my head, and every time I read a new update, I want to cry.

Don't get me wrong, I love CHD and special needs families and I try to say a little prayer for them when I learn that they need it. I just don't think I have it in me right now to be as vocal and active as I have been in the CHD community. I need to recharge my batteries. I think today was Tommy's way of letting me know he's always with me and that it's okay to feel like I need a break.

I'm not abandoning my blog. It just might be a little while before I update. Be patient. I'm still here!

Monday, August 30, 2010


I'm still trying to come to terms with how I feel about God. I don't mean to be disrespectful or bash a religion. These are MY personal beliefs. Before Tommy, I prayed, even went to church when I could. After he was born, it became difficult to pray.

I felt like anything I prayed for would question or disrespect God. How could I ask for Tommy to be made whole when God had made him this way? How could I pray for healing when I knew it wouldn't happen? Tommy would never wake up one day without heart defects just because I prayed. Would he?

If Tommy went into surgery, I didn't know what to pray for. Asking God to keep him safe was like saying He wouldn't keep him safe if I hadn't asked. Then again, what if it was God's will to take Tommy? It wasn't my choice. He wasn't mine, I just had the honor of being his Earthly mother.

I still question my relationship with God. I believe in Him. I know I am loved and one day I will go to Heaven and be with my sweet Tommy again. I guess it's not God I have an issue with, it's Prayer. How do you ask God, all knowing, omnipotent God for something? How could I ask for something so selfish as keeping Tommy here on Earth with me, no matter how much it hurts me? How do I ask for Him to comfort me when I know Tommy is in Heaven, so why do I still grieve him?

I feel like I am a child and I don't have the right to ask for anything. I was told yesterday when I was having financial problems to go to church and talk to God. All I could think was "God won't pay my bills, that's why I'm well enough to work." How do I ask the God that took my son from me for money? I know... He didn't take him.... I have a love/hate relationship with that thought.

I tell myself over and over that it was God's will, that God is never wrong...but I find myself thinking things like "Why should I ask God for anything when he took the one thing from me that meant everything?" or "God didn't save my son, so why should I have any faith that He is going to provide me with anything?"

I'm thinking I have more issues than I thought I did when I started writing this.

Friday, August 20, 2010

The Invisible Scars

The day I dread more than any other day is here. I've been up since 7 and I've found tears in my eyes about 3 times. It's not going to be an easy day.

Last night, I contemplated what I wanted to write about today. It didn't take long to know what I wanted to share. I realized last night that I have a scar, except it can't be seen. I've heard people say that scars have a story, or scars are the road map that shows where you've been, but since my scar can't be seen, I have to tell you about it.

My scar sits in the middle of my chest, right above my heart. Or at least where my heart used to be. My heart was violently ripped from my body and given to my son when he died. He took it to Heaven with him. In its place, I was given a broken heart to use until I can meet him in Heaven and he can return my heart to me. I know he has my heart because I can feel him holding it. Every now and then, I feel flutters as he gives it a hug and thinks of me.

I wish my scar would show up on my skin so people could see that I've been cut open. How are they supposed to know how much I hurt if they can't see the scar? How are they supposed to know that something so precious was taken from me? Something I love so much and can't live without? How are people supposed to comfort my pain when only I know that I hurt?

It hurts every day, but today, it hurts worse. Like a birthday, anniversary or holiday, we remember important days. They are milestones on our journey. This day is an Angelversary. The day my son died.



My arms used to ache to hold him. Now, my heart hurts as I try to remember the smell of his head, the sound of his gurgley giggles, and the way he breathed when he slept. I can spend hours staring out the window at nothing just thinking about him. When I go to sleep at night, I don't dream about him anymore. That hurts. I can go for weeks without crying. Not months. Just weeks.

I'm keeping myself busy. I'm living life to the fullest. But like a cup that has a leak, no matter how much you fill it up, eventually it's going to be empty whether you like it or not. Since getting a new cup isn't an option and this is the one I'm stuck with, I can try to patch it up and pray it holds or I can just keep trying to fill it faster than it empties. My broken heart leaks. It leaks pain, it leaks tears and sorrow. Patch with a joke. Patch with a happy moment... Patch all you like, the scar is still there.

Whether you can see it or not.

Wednesday, August 18, 2010

My Birthday

For an entire year, I hated August 17th. In 2008, I had my birthday sitting in a hospital room, crying because my son was sick and nobody could tell me why. No cake, no love, just me in a hospital room feeling sorry for myself and pissed off at the world. In three days, my son would be dead and I would hate the world even more than I did that day. I swore I would never celebrate my birthday again.

Last year, I chose to work on my birthday. I got a few birthday wishes, but ended up eating cupcakes at midnight because I was so depressed over my birthday and the impending anniversary of my son's death. I waited all day for my hubby to tell me happy birthday and do something nice for me. He forgot. Really. Bad. Day.

This year turned out to be quite the opposite. My boss told me to take the day off, and then while I was at work Monday night, he called to say Happy Birthday because he wanted to be the first. He doesn't know about the rough time I had last year, so for my birthday to start in such a caring way brought me to tears. I went to the cooler (no cameras) and bawled like a baby. I was an emotional wreck for the rest of the evening, but when I woke up on the day of my birthday, I felt wonderful.

I went out with hubby, who not only remembered to tell me happy birthday, but also took me out to lunch! We came home and worked on rearranging furniture in two different spaces. One for him, one for me. He now has a "man cave" and I have a living room again! He can play his xbox on the big screen in the dark and I can open the shades and let the sun stream in while I listen to my iPod on the awesome house system he hooked up for me. The living room still needs work. I need to paint one wall and find a way to hide all of the power cords dangling from everywhere, but I have room to exercise now and I know where all of MY things are located!

After working hard on the living room, I made a steak dinner for hubby and me (the kids were content with corndogs and mashed potatoes). After the kids went to bed, I attempted to dye my hair with pink highlights. It's not as dramatic as I had hoped. I have pink roots and a little pink on the underside of my hair. I color treat it black, and the kit I used was for black hair, just not color treated black hair. I'm going to have to do a whole bleaching and coloring process. Not sure I'm up to doing it myself the next time around.

Finally, after I cleaned up the pink that was everywhere but in my hair, I treated myself to chocolate cake, and through it all, I kept getting Facebook updates of another and another and another birthday wish. I lost count, but I did take a nap early in the afternoon and woke up to 54 text alerts from Facebook.. and that was only at 2 pm. I got constant updates until well after midnight. I can safely say this was the the best birthday that I can remember.

In three more days, it will still be Tommy's Angelversary. I'm okay with that. I will get sad again as it approaches. How could I not? But I'm at least able to celebrate myself a little and know my son would approve of my happiness.

Monday, August 16, 2010

It Creeps Up On You

Standing in the cooler at work last night, I felt the rush of a memory. Maybe it was a sound, but I could feel the hospital. Earlier that day, as I waited on a customer, something in the air smelled JUST like Tommy for just a second. When we are low on fuel, an alarm sounds in the back room. It sounds exactly like the telemetry monitors. It seems like I can't get away from it. I'm constantly bombarded with sights, sounds and smells that trigger memories.

There are times when I look at pictures or watch videos. Maybe I clutch one of his blankets or an outfit and try to remember. Those are the times when he feels the most far away from me. The harder I try to remember what he smelled like or what his voice sounded like, the more distant the memories become. I have to concentrate on the picture for a second to recall the feelings.

The very same day, I can go outside and see a butterfly or a flower and without even trying, I can FEEL him all around me. I can't look into a small child's eyes without wondering first of all if he "knows" me because Tommy told him about me and secondly I wonder when Tommy would have walked and how tall he would be now. I miss that smile.

I'm torn between letting go and just letting the memories happen and holding onto them tightly so I never forget.

I think what I miss the most is how he smelled. My favorite thing in the world was the way the top of his head smelled. I have read that parents bond with their children by smell, specifically, the top of the head. I have the hospital gown he was wearing when he died, but it stopped smelling like him a long time ago despite putting it in a ziplock bag. While he was in the hospital, I kept myself busy doing laundry. I never knew he would never come home again and that I was washing away all of his precious smell. Every stitch he owned and every sheet and blanket were washed and put away, waiting for his return that never happened. I even washed Wub the night before he died because it was looking so cruddy. Regrets.

I never knew memories would be such a challenge to hold on to.

Sunday, August 15, 2010

This Sums It All Up

July is when he was taken from my home. August is when he died. September would have been his birthday.

Wake Me Up When September Ends....

Friday, August 13, 2010


I'm asked constantly why I don't move closer to work. It's complicated, but it comes down to my kids. They've been through enough. Having a stable home is important. So is going to the same school for more than a year in a row. Jobs can come and go. My home is my home. Tommy is buried nearby. It's peaceful.

Right before Tommy was scheduled for his first heart cath for what we thought would prepare us for his Glenn, we jumped many hurdles to bring him to Kentucky to meet our families for the first time. While we were here, Rob and I took a walk around his grandparent's property. Looking at the beauty and isolation, I was smitten. I felt at home even though I had never lived here. As I looked around at how far we were from just a grocery store, I realized that if there were ever an emergency with Tommy, we could never get him to a hospital in time. My dream of living out in the country drifted away. As long as Tommy had medical issues, we had to live close to a facility that could treat him quickly.

When Tommy passed away, again, I found myself standing on his grandparent's property. I was filled with such peace. The beauty all around me reminded me of Tommy. Every time the breeze touched my cheek, I felt his kiss. It was quiet, open, serene. Everything my life had not been up until that point.

Then we walked into the trailer that would become our home. Although a bit smaller, it was nearly identical to the one where we lived in Charleston. It was calming and haunting all at the same time. I can't explain it. Living here makes me feel wrapped in Tommy's love. I often visualize him running through the fields, laughing and playing without a care in the world. I think he picked this place for me to live so that I could heal after he died. I never want to leave.

Every day, I wake up and take the kids to the bus. When I turn around and start to walk home, every single day, it still takes my breath away. My lungs fill with the country air, the wet grass sticking to my feet. The sound of the cows next door and across the street. The sun streaming over the trees. If I could see Heaven, I'm sure it looks exactly like this.

Monday, August 9, 2010

Celebrating the Moment

I still find it strange how some things change over the course of a year while others stay the same. This time last year, I was sick with anticipation about how I would feel on Tommy's angelversary. This year is so different. I have so many wonderful things planned for that week. I feel my life-force returning to me. Yes, I still miss him. Yes, I still cry for him and dream about him at night. Some days I feel like I'm just ready to get off this ride. That part will never go away, but the part that lets me be happy has slowly returned.

Tommy's life was a study in celebrating the moment. Every little thing was new, exciting and sometimes scary. We had very low times, but the good times were amazing. Little things like trying to catch a bubble, laughing at his brother, or chewing on his oxygen tubing on purpose just to see that look on my face. He was all boy.

After he was gone, life took on a new meaning for me. Nothing mattered anymore. The long term was gone and only the moment mattered. I'm slowly letting myself see that there are things to look forward to in my future, but for the most part, I am happy with living moment to moment.

I love to wake up and hear a thunderstorm. I love to smell the honeysuckle in my yard. I never plan menus. I cook what I'm in the mood for at the time. Life is FULL of wonderful moments! Never forget that each moment is precious. Make every hug count. Never be afraid to say how you really feel. Don't be afraid to show emotions that the rest of the world might frown upon.

The next two weeks is going to chock-full of MOMENTS as we lead up to Tommy's Angelversary. I'm going to celebrate my birthday..I'm going to go see (hopefully) Joan Jett at the State Fair. I'm going to put pink highlights in my hair. I'm going to take the time off from work to be with family and friends to watch Kenny Wallace race his car in Bristol, TN with my sweet baby's name on the hood (along with many others). I'm going to blow lots and lots of bubbles and I'm probably going to cry.

I will hug my kids a million times. I will pet my cats. I will dream. Moments, moments, moments. Cherish every single one.

Wednesday, July 28, 2010

Everyone Needs

A really good tantrum every now and then! Let it out! Throw something. SCREAM!!!!!

As mom to an angel, I get plenty of opportunity for the world to get me down and I start to feel sorry for myself. Some days it can be over the way my hair looks in the mirror. Other days the rain reminds me of Tommy signing "Itsy Bitsy Spider". It could be my husband said the wrong thing to me. I'm a woman on the edge of sanity most days. One good shove and off I go! (My husband really doesn't like this aspect of my personality. Wonder why?)

Today was a temper tantrum kind of day for me. Not sure what sets me off. Lack of sleep. Memories. Hunger. Maybe plain old moodiness. When I get this way, I really don't care what I say or how I say it. I'm out for blood. Good thing today I decided to keep my thoughts to myself and not take them out on any unsuspecting customers. I had a raging temper tantrum brewing inside me and took it out by texting mean, snotty things instead. Not the best of ideas, but I got a lot of anger off of my chest.

And then it was gone. POOF! Like a calm washing over me.

Some tantrums have better outcome than others. Today had a good outcome. Sometimes I just want to curl up in a ball and weep. Every single one of those days Tommy is not far from my thoughts. I know a screaming, throwing things, breaking stuff tantrum will never bring him back, but it's a whole lot cheaper than putting myself in the hospital having a panic attack. I've been known to purposely stock the cooler at work just so I can kick the empty boxes as hard as I can outside. Some days, I just scream for no reason and I feel great!!!

A little pity party is good for the soul every now and then. Give yourself permission to have a bad day. Throw pillows. Punch the couch. SCREAM UNTIL YOUR HEAD FEELS LIKE IT WILL POP OFF!!!!

Then sit back and feel the calm wash over you.

Sunday, July 25, 2010


I've got to get something off my chest. It hurts me so much and I don't know how to deal with it. When I was a Sophomore in high school, I met a boy named Thomas. That is his real name, but we didn't call him by that.  That's all the information I'm willing to give about him (for his privacy). We had so much fun together. There was never anything romantic between us. He was my bud. Once, I spent the night at his house and we made crank phone calls. I slept in his sister's room. We watched "West Side Story". I loved him like my own flesh and blood.

He came to my wedding when we were just 18. He was there for me.

Soon after, he went into the Navy and through his travels, we lost touch. I frequently sent letters to his parents to forward to him, but eventually they moved away and I lost all contact with my friend. For years and years, I searched. This was before the internet was popular and accessible. My heart was broken.

Years passed me by, Thomas always in my heart. We moved to Charleston and soon after began my search again. Charleston used to have a Navy base, so I was hoping there was a clue there to lead me to him, but that wasn't meant to be. As the internet became more accessible, I did more digging. I joined, but he wasn't there. He was gone.

Several months after joining, I saw his name. I cried and payed for the full membership to have the ability to leave him an email. I left my phone number and said a prayer. Less than a week later, my phone rang. It had been about 7 years since I had last talked to Thomas. We talked all night, and many more times. We shared our stories about our spouses, our kids, our lives. Eventually, he would come to see me! Time had changed us, but he was still Thomas.

I would find out about a year later I was pregnant with a very special little boy. Rob and I chose the name Thomas, after my friend, Lee for Rob's middle name and decided to call him Tommy Lee after the drummer in Motley Crue. If it hadn't been for Thomas, Tommy would never had been Tommy.

Eventually, the Navy would take him around the world again and eventually the calls and emails stopped. The last time we had contact was around the time Tommy died. I've been able to track down where he is living and I've sent him several messages. All unanswered. I don't know why.

Had we grown apart? Did I offend him by naming my son after him? Is Tommy's death too much for him to face? Or is is something I will never know. It's so hard.

Thomas, if you ever get a chance to read this, I love you. You were one of the best friends I ever had in my entire life. I miss you. I hope someday we can pick up where we left off. I hope your life is well. I've seen the parts you've played in reviews. I wish I could watch in person. I bet you're still amazing on that stage.

Wednesday, July 14, 2010

Has it Been THAT Long?

It's July. In 2006, this very month, we would learn about Tommy's heart. That was 4 years ago. FOUR YEARS. Where does the time go? So many things happening at once right now. I have to let go of some of the terrible things, like remembering the day DSS took my kids away on bullsh!t charges (that were dropped), but which Tommy never came home from. I HAVE to let that go. I've marked it on my calendar that Friday marks the day that Tommy has spent more time in Heaven than on Earth, but that is something that I will only remember in my heart for one day. It's not an anniversary, just a very special day I want to mark one time.

But this. This deserves a moment.

I will never forget sitting in the room after having two Level 2 ultrasounds back to back, then a fetal echo. It had been a day of discomfort and unexpected news. The day started out as a way to discover why I had been mysteriously bleeding and turned into a nightmare. My little boy.. and we would discover, for sure, he was a little boy that day, not only had a single vessel umbilical cord, but was missing part of his heart.

His diagnosis would be Double Inlet Left Ventricle. You can see from the illustration that all of the blood in his body would mix together, some with oxygen, some without, like a giant soup, then be recirculated again and again.

I was on bed rest anyway, so I had nothing better to do that start looking it up on the internet. I found very little about the diagnosis. Four years later, its still hard to find information. I was ready to tackle this thing head on. But then, Tommy had other ideas. Like having his birthday 7 weeks early. He never did what he was supposed to do. Silly boy.

In the hospital, we were not encouraged to talk to the other parents at bedside. HIPPA laws and all that mess. I never saw them in the waiting room, because we spent as much time as we could next to our  kids. I felt all alone in the world. I really did. I asked if there was a support group and was told that there used to be, but so many parents were from out of town that they just met up at the RMH and kind of supported each other there. Tommy was the only baby there with this magnificent hospital right in his back yard. The rest of the kids came from all over the state, then left when they were discharged.

Some of the heart parents I met online still didn't have much in common with us. They needed one surgery and were done. Tommy was a preemie with a weird heart defect nobody I talked to heard of and a trach and gtube. Very discouraging.

While he was in PCICU, we lost nearly everything. We were facing eviction because I forgot to tell our property manager that he'd been born, much less what all was wrong with him. Then I forgot to pay the lot rent. When I got the notice, I was in the middle of calling her a heartless b!tch when I realized she didn't even know what we had been through as a family. That was a rough day. I soon realized we needed help financially and talked to the social workers at the hospital. We both started making phone calls, but were told it was so close to the holidays that everyone was tapped out and there was no help. I eventually came across a group called Spencer's Fund and saw that I needed to join The Congenital Heart Information Network (TCHIN) to get assistance.

I don't even remember about what became of the assistance, because all of a sudden I was connecting with people all over the world with kids just like mine! Around the same time, I found out about Carepages and started a page for Tommy. Can you believe some of you have been on this journey with me for FOUR YEARS now?

Through our struggles and trials, I have met some of the most amazing, brave kids and their equally amazing parents. I've gotten to know a close few much better and can't imagine my life without them. It's one of the only GOOD things that ever came out of becoming a heart mom. Since Tommy's death, I've gotten to know even more families. I will admit, I do have a tinge of jealousy when one of these kids goes in for heart surgery, but only because Tommy needed surgery so badly, but his lungs prevented it from happening. Those kids are beating the odds. Those kids will have the chance to laugh, run and play and I am so happy for them. They'll forever be "my" kids in my heart.

Four years. I don't think I can look at a 4 year old right now. That's the downside. My baby will be Forever One.

Thursday, July 8, 2010

Fitting In

I'm feeling a little lost these days. I used to be a stay at home mom to a special needs child being kept alive by machines and heart surgeries. Now, I'm the bread winner and my child is gone. When Tommy was alive, my life was a bubble. It had to be for him. I stayed in the same room with him, feet away, constantly watching him and listening to his breathing. I had very few friends, and the ones I had before Tommy was born started to drift away into their own problems and lives, so I turned to the internet.

I joined a few online support groups and forums. My new friends were stay at home moms, homeschooling moms, moms with trached kids, moms with kids with heart defects, blogging get the idea. I thrived in this online community in the days before Facebook. We posted and emailed several times a day about our kids, supporting each other and offering advice.

Then Tommy died. We moved. I started working outside the home again for the first time in three years. The kids went back to public school.

I'm still struggling to figure out where I fit in. I find myself checking in on the forums less and less. I feel like I have nothing to offer. When I think I have advice to offer to someone about my experience, I feel like they are going to ask me "so how's he doing now?" Umm. He died. Never mind, sorry I bothered you with my advice...ask someone with a living child.

It doesn't matter if it's about our experiences with a trach, tracheal surgeries, feeding trials, speech therapy, heart surgeries, lung issues, sensory issues or any of the other many experiences we went through. I just feel like we've been kicked out of the club. I can no longer post about feeding the bed with the tube feeding the night before. I can no longer talk about waiting for the next heart surgery or how I feel when it's time for a heart cath. There's no need to discuss nursing situations, much less what curriculum I'm going to use for the kids when school starts again.

Don't get me wrong! I still love the friends I have made through all of my experiences and want to keep them a part of my life. I adore Facebook and the ability to stay in touch with everyone I've met. I guess I'm still struggling with finding my place in the world. I've posted about it before. I just don't know my place in the world anymore. I still have a special needs child at home, but his needs are so different from the ones Tommy had. I don't even know if it's correct to call Brandon special needs. He has behavioral issues, but he doesn't require any intervention to keep him alive or improve his quality of life. Medications, yes, and he sees a therapist, but outside of that, he functions just like any other typical kid.

WHO AM I?????

Can I still call myself a heart mom? Can I still say I am the mom to a special needs child, even though he is gone? I feel like I didn't move on from the past, but it let me go. Kicked me out against my will. How do I participate in my own life when I don't know what that life is supposed to be?

Sunday, July 4, 2010


It's funny how a sound can bring memories crashing back to you. The sound of fireworks whistling through the air tonight spun me around, leaving me sad and confused.

Fireworks on the Fourth of July.

In 2007, I watched them from Tommy's hospital room after he had his BT Shunt revision, thankful he was alive because his Glenn could not be done. My tiny little son, not even a year old had just had his second open heart surgery. The fireworks made me feel like we were celebrating our own little independence by making it through surgery even though a week before we were told there was nothing that could be done.

After his shunt revision, we made sure we celebrated everything. Every holiday was marked with fanfare. His birthday was celebrated by so many people near and far. Halloween we dressed him up in a costume too. Christmas was beyond any blessing we could have ever asked for (and still shines in my heart as the most loving thing the world has ever done for us.) He sat on Santa's lap for the first and only time.  Easter, he tasted a chocolate bunny for the first time. He hated it, but I couldn't help but laugh at his expressions of distaste.

And that brings us to the Fourth of July, 2008. I could not wait for the sun to go down that day. When it did and I heard the first whistles of the fireworks, I put Tommy and his gear in his stroller and we went walking with Brandon in search of sparkles in the sky. As Brandon and I oohed and ahhed over the fireworks, I realized Tommy wasn't really that impressed. But then I took a look at us.

We were sitting on top of a hill, outside, together. My baby, in a stroller, outside watching fireworks with the family like any other kid. NOT in the hospital like the year before when we thought he would die. Maybe I just realized he wasn't impressed with the fireworks because there was so much to see in the big world of outside. That was one of the best days of my life. The sound of the fireworks whistling and popping made me feel so strong, so hopeful. My son had made it!!

And then, last year. I stepped outside the store to watch the fireworks and as I looked up to watch the shimmers fall to the earth and heard the snaps and whistles, it hit me like a ton of bricks that the year before my life had been so wonderful. I had everything I could have ever wanted. Husband, beautiful kids, a home, income and my very sick son was alive and thriving.

The fireworks turned into a sad reminder of what used to be. I'll never forget sitting on that hill with Brandon and Tommy that night, watching the beauty in the sky and marveling at how far we had come in the year before. From cheating death to celebrating life to feeling empty and mourning my beautiful son.

When you watch the fireworks Sunday night, I hope you remember Tommy and all that he was able to overcome. For just a little while in his life, Freedom did ring.

Friday, July 2, 2010

Medical TV

I was there again. Back on that couch watching.

Tonight, since I couldn't watch the current episode of Boston Med until it posts online, I decided to watch last week's episode to get myself caught up. Someone was coding. In cardiac arrest. The words flashed on the screen as the doctor said them. "It's been 45 minutes. Call time." Oh, how I hate those words. That was how long CPR was done on Tommy. "Call time" has to be the most terrible words a doctor has to say, not including telling the families.

I don't know why I am drawn to medical programs. They fascinate me. I understand them.  Even before Tommy was born, I loved them. You would think after practically living in a hospital that I would detest them, but I find myself drawn to them more now than ever. I guess it makes me feel like I am still a part of that world.

But why? Most of the time on these shows, there is a horrible, traumatic thing happen and then *poof!* Everyone is all better and going home. I guess I live in a fantasy world sometimes. I want the magic powder that makes everyone all better. I want to go back 2 years ago and have them sprinkle it on Tommy instead of saying, "Call Time".

Don't know if I watch to help myself cope, to see a miracle, to find a way to escape for an hour... I don't know. I guess it is the same reason I gravitate towards other families dealing with their own sick kids. I want to see the miracle happen, but can't help to be a little jealous. My husband tells me I need to stop, but I can't help it. There are so many kids out there that NEED one more prayer, one more person to show they care. How can I not? When Tommy was alive, these same people surrounded me with love and showed me tremendous support. Most of them are still here with me on this roller coaster ride now that he's gone.

Maybe I watch them to remind me that my own life is precious. That every life is precious and that there are good people out there trying to make us all well. To someday never have to say the words, "Call Time" because there will be a cure for CHD.

Thursday, July 1, 2010

Checking In

I'm so tired this week. My life reeks of stress. I found some time for me today, but even so, I still have a headache.

I'm trying to get my house cleaned one room at a time. So far, so good until today when I lost all of my mojo. I'm trying to get to bed "early" so that I can get a good night's sleep and start fresh tomorrow. We will see how that goes.

I haven't had much internet access lately. All of the times I've wanted to blog or all of the things that have crossed my mind have not coincided with the times I do have internet. It's been very frustrating. I hope that changes soon.

Not many changes going on in my life. Really, it's all drudgery. I can't really go into the stress parts, but I'm hoping it all works itself out and I don't have to deal with it anymore.

Well, I'm off to bed... at 2:30 in the morning. See? Early! For weeks now, it's been 4.

Thursday, June 24, 2010

Deja Vu


That's how I feel today.

Yesterday, I was cleaning house and was vacuuming the hallway. Let me explain that the mobile home we live in now is set up nearly identical to the one we lived in while in Charleston. This one is smaller and has a couple different features, but walking in the front door feels exactly the same. I don't know if this helps me or makes me feel worse some days.

As I was vacuuming, I was walking backwards and stepped around the oxygen concentrator.

Except, it wasn't there.

I do this a lot. My head swims for a second as I look for things that should be there that aren't. I've lived here for almost two years now. I should know where I am, right? The carpet and walls are different colors. What would have been Tommy's old room is now the boy's room. It looks nothing like Charleston in there, and yet, I find myself not able to comfortably walk in. It's like walking around in a dream state, except I'm awake and I can't find myself.

Its not exactly depressing moments when these things happen. More of a deja vu kind of moment. For a second I was back there again, trying to clean around that noisy concentrator. It was a pain to have medical equipment in my house. It was loud, cumbersome, and a constant reminder that my son needed machines to live.

And I miss them.

I cleaned my living room yesterday. It used to be a challenge because I was always trying to figure out where to stash 15 tanks of oxygen. I can see all of my floor. No quilts for Tommy to play with his toys. No toys for that matter. We used to live in a hospital. Now, it's just a house. A house that is too quiet at night.

Because there are no oxygen concentrators running to remind me my son is alive.

Thursday, June 17, 2010

Another Countdown

Not long ago, I posted about the recurring dream I had been having about trying to sort through our things in Charleston. Last week, I got a phone call. Someone I love drove to the place where our old mobile home used to be. It was no longer there. He told me I could stop having my dreams now because there was nothing to go back to and I could be at peace now. What a wonderful, loving thing to do for me!

Since then, my life has been upside down. I've had two dreams of Tommy, but I can't remember them. I remember that they were sad dreams, so it's probably a good thing I can't remember them right now. I have something weighing heavily on my mind that I know is affecting my dreams.

I've reached another milestone. One month left. On July 16th, Tommy will have been gone from this Earth longer than he lived. This is a very sad time for me. It will mean I have lived longer without my sweet boy than time I was able to spend with him. I feel myself slipping farther away from him. I find myself constantly looking at pictures, and reading old stories about him, trying to keep his memory fresh in my mind. I worry that someday I will be the only one who knew him and when I am gone, he will be too.

He was the bravest, toughest, most stubborn, happiest kid I have ever met. He could charm the socks off of any nurse in the hospital and have every doctor he met scratching their head in amazement. Every breath he took and every beat of his heart was a true miracle. I remember hearing doctors tell me that I was doing an amazing job with him. He gained weight, he looked good, I stayed on top of everything, he was doing remarkable, blah, blah, blah... I'm no saint, I was just being a mom. I'm sure subconsciously I was working harder because he did require more than a typical child, but it didn't matter. My child needed me and I was there for him. End of story. Parents tell me they just don't know how I did it, or they could never do all that I did for Tommy. Sure they could, had they been in my shoes.

I would give up every breath in my body to do it all again. Every surgery, every procedure, every medicine, every trip to the ER. Every little thing we did for him gave us another moment of life with Tommy. I cherish the moment he entered this world through my body to the moment he looked at me for the last time and took his last breath and every moment in between. I stare in amazement at a picture of him sleeping on his tummy. It took a year of therapy and hard work to get to that moment, but he did it! Most 18 month old kids are learning to walk, talk and explore. Tommy was learning to sit up all by himself.

I wish I could have seen the day he took a step.

30 more days left. 30 more days until I reach another milestone I never wanted to see. It's just another day, right? Another day just like today that I am aching to hear that laugh and hold him in my arms.

Friday, June 11, 2010

Found Memories

Tonight, I was cleaning out a suitcase. I stumbled across some really sentimental things. I found the last trach Tommy ever wore. It was the one he took his last breath with.

Medical ID bracelet.

ID bracelet from when he was admitted when he had his tonsillectomy. It says 7/16/2008.

Just a month before he was gone.

Going through baby clothes. Trying to bring myself to find a way to make a quilt out of them. I'm going to work on it with hubby's aunt.

Trying to move through this.

Thursday, June 10, 2010

Searching Dreams

This evening, I fell asleep on the couch. I had a dream that I can't shake. I've had similar dreams in the past, but this time, it was off kilter. It bothered me.

When we left Charleston, we put everything in storage before we moved. There were a few things we decided not to take and a couple things we forgot. Like our kitchen table. It was an antique that I had picked out and bought earlier that year. I just loved it! However, we had just buried our son, lost all of our income and were losing our home. To say my head wasn't screwed on straight is an understatement. We had set several things on top of it that we were going to throw away and somehow, the table just managed to get left behind. We didn't realize it until we were out of the state and there was no going back. It was the only thing we left that I gave a second thought over. There was nothing else sentimental, worth value or just something I wanted to keep.

For the past year, I've been having a recurring dream that we end up in Charleston in the middle of the night and find that our trailer is still there with ALL of our things left inside. We no longer live there and we are not supposed to go inside because it doesn't belong to us anymore, but we break in anyway. I frantically start going through things and we pack up a truck all night long. We take what we can and always have to flee because we are about to get caught.

As the months progress, in my dreams, we've gone back several times. Each time, I'm looking in different rooms and packing different things. Most of the things in the dream I've never even owned in my real life, but in the dream, they're mine and it's important things. Every dream has just been me and Rob, sometimes with sometimes without Matthew and Brandon. It doesn't seem Tommy ever existed. I don't even remember him in my dreams. Like he was never there.

In reality, when we left the house for the last time, we made a point to make sure we took part of Tommy with us. We wrapped up a couple of his favorite toys in one of his blankets and said a prayer. We told Tommy it was time to go with us. Then we put those things in a special box that I carried with me when we traveled, not left in storage. A few months later, my husband went to Charleston without me and brought back our things. Nothing was missing except that silly table.

Tonight when I had my dream, it was the same. We end up in Charleston. Me, Rob, Matthew and Brandon. We set to work packing, but instead of finding all of these things that we've left behind, I walk in to find we've already been there before and that this is a second trip for us. There won't be much we haven't already taken. Instead, I find stacks of newspapers in all of the rooms. Like I've saved several copies of the same paper. I get a feeling in my dream that every paper has an article about Tommy. I dream that he has a scar on the side of his face from some sort of burn, and that the papers talk about him. I feel he is gone and I cannot go back ever again. I leave all of the papers in the house and take a few of my clothes. That's it. There's no truck full of boxes to haul away this time. Just memories. Sad, sad memories.

I have no idea what the dream means. It was upsetting to see the scar on my sweet baby's face and I have no idea why my mind would see that. I woke up very sad and wondering what it all meant. Closure? Healing? I don't know. I can't go back to that house. It doesn't exist anymore. It was a mobile home on a lot that has probably been moved or resold to someone else. I don't know what I'm searching for. I always hoped my dreams would guide me to what I'm looking for in my life, but this time, I have no clue. I'm lost.

Tuesday, June 8, 2010


I just changed my blog's web address to Sorry for any confusion this may cause anyone. I should have made an announcement first, but didn't realize it wouldn't carry over once I changed it.

Wednesday, June 2, 2010

Got To Get It Off My Chest

I was robbed. Cheated. I had a beautiful son and now he's gone. Why didn't anyone listen to me? I was his mother! I knew something was wrong. I've told Tommy's story before, but this particular circumstance will not stop nagging me. Yes, it's haunting to have seen him die in front of me, but worse was sitting in the hospital over a weekend and being ignored.

The doctors rounded and practically patted me on the head telling me all was well. But they weren't his doctors. I guess everyone thought "Hey, it's Tommy. He bounces right back. He's got his own way of doing things, but he's always okay." I kept believing people when I was told he had overworked himself learning to breathe without a trach, that we'd rushed him.

My ears heard this. My head found logic in what I was told, but my heart, my mommy-gut was screaming that something wasn't right. How could a child go from being completely weaned from oxygen and having his trach removed and doing the best he'd ever been health-wise in his life, to a week later, gasping for air, needing oxygen at odd moments and sleeping nonstop for 3 days? He was literally falling asleep sitting up.

I begged for a white blood count, but I was told one had been done when he was admitted Friday night. So what was the harm in doing it again? Oh, it was the weekend. Everything comes to a halt on the weekends in a hospital. Really, it shouldn't. People don't stop being sick because it's a Saturday.

What if they'd taken me seriously that weekend? Instead of waiting until Monday, Tuesday and Wednesday to wonder what was going on and do this little test and that little test. They would have discovered what we had to learn in an autopsy.

My son was in heart failure. He had bronchopneumonia and wasn't being treated for it. Would an echo have mattered? A chest xray? How about a little stick to draw more blood and start antibiotics right away, just in case, on Friday night instead of Monday? Then when his IV blew out on Tuesday, just leaving it out because he was well enough to go home the next day anyway.......

He went "home" alright.

I was so mad and frustrated that weekend. He'd been in the hospital a month and we finally got him home, only to go back 3 days later. The happiest day of that summer and the saddest day of my life were exactly 7 days apart. I didn't take one picture of him those 5 days in the hospital. He was so, so sick and unresponsive. I knew there would be another day for pictures. I just didn't know it would be at his funeral, taking pictures of him for the very last time.

I have no closure. There are days the "what ifs" tear me apart. What if we had been on our regular floor with nurses that knew him well? What if I had taken him in to the ER Thursday night instead of Friday afternoon? What if I had a screaming temper tantrum in his room until security was called and MADE them find out why he was so sick?

I feel like the whole world dropped the ball that weekend. So many missteps. So many things that could have been done differently. I was so sick to my stomach. My mommy-gut knew things weren't right.

I was told he was depressed. They'd send in a Child Life Specialist. This from the cardiologist on call that weekend. I blame her. Never liked her, now I have a reason to despise her. I don't think she "killed" Tommy, but she sure didn't do a whole lot to save his life either.

If one small thing had been changed, would I be awake in the middle of the night because I was filling his feeding pump instead of blogging about how much I need him back? About my broken heart?

It's not healthy for me to keep all of this inside. It has to come out. I have to say how I feel or I carry it with me and eventually, it overcomes me.

The attorney we hired dropped the case after a year. No explanation, just that they were not the ones for the job and I had 3 years to pursue it if I chose. We chose not to explore that option again. There would be nothing to gain and it would not bring him back.

Deep breath.

I miss you, sweet boy. I'm sorry. I wish I had known you were dying. I wish I had taken your picture. Held you one more time. Told you I loved you again and again, even more than I did. I wish I had never washed your Wub. Never washed your clothes. I can't find your smell anymore.

Most of all, I wish you were still here.

Thursday, May 27, 2010

Heartbroken All Over Again

Another baby died of their CHD today. I only learned of her last night and spent about an hour reading her family's blog getting to know her and praying for her. She was 10 months old. Another family gets to plan a funeral. Decide what they want to dress their child in for the very last time. Figure out what to do with her things when they are ready. And grieve. Forever and ever and ever.

I can't get away from the pain. I mean, it's not on the surface anymore. It's no longer a fresh wound, but one that is so deep that just because it looks healed from the outside doesn't mean it ever will be.

Losing a child is like having your heart shattered and no matter how many times you put it back together, you're missing a piece and the sharp pieces prick at the inside of your chest if you move the wrong way that day. Some days, you can walk just the right way and feel no pain, but then you let your guard down and WHAM! There it is. As time goes by, scar tissue keeps your heart mostly intact and keeps you from getting stabbed over and over again, but it's always there. There's always that chance you'll wake up that day and feel yourself hurting all over again.

Its waking up feeling like today is going to be wonderful, but then you hear the rain on the roof, smell something in the breeze, hear a sound and you're pulled back to the memory of the day your world stopped.

Its not wanting to get out of bed some days, but life for everyone else goes on. It's not wanting to celebrate for another person's child when yours has nothing to celebrate ever again. It's anger, resentment and feeling bitter for no reason sometimes. It's nightmares when you only want to dream of holding them again. It's feeling like everyone wants you to get over it and wanting to tell them to take a flying leap. It's passing the cemetery and not wanting to go in, and longing to find some peace all at the same time.

It's looking for signs from above, wondering if the song you hear on the radio was meant JUST for you from your child. It's marking the calendar with how long they've been gone, not how many birthdays they've celebrated. It's seeing kids around your child's age and wondering what your child's life would have been like had he lived.

Tommy has been gone for almost 2 years now. It feels like yesterday. I used to reach out to parents that had lost a child, but now it makes me feel so depressed. Misery loves company, but this misery isn't like losing a ball game or divorce or any other loss, no matter how big or small. It's a black hole of despair that never, ever, ever goes away. I've tried to ignore it, but it's always there. I guess "pain" isn't the right word to describe what I feel. It's more like being covered with a thick fog of sadness. The saddest feeling you've ever had could never touch the sadness a parent that has lost a child feels.

I don't need pity, understanding, a shoulder to cry on, for you to look the other way, or any other way you think you should feel about my sadness. It is what it is. My burden to bear. There is no right way to grieve. I blog. That's me. Another parent might never speak of their child again. That's not wrong either. The only thing I need, what any parent that has lost a child needs is for the floor to stop falling out from under us for no reason.

Monday, May 24, 2010

The Memories of Holding You

Two pink lines on a pregnancy test. Beaming with excitement and glowing with pride and love at the thought of the child I held inside me. Through the good days, the bad days, the scary days and the ever so sad days when I wondered if I would ever get to hold you on the outside.

Holding you inside of me just one more day, then another, for three whole weeks, trying to grow you just a little bit more when my body failed to protect you.

Finally... when you had been on this earth for two days, I got to hold you in my arms. A pillow to rest my arms upon, layers and layers of blankets and more wires, lines and feeding tubes than I cared to count, all carefully maneuvered so that I could cuddle with you for just a moment. Admiring the tiny scab on your nose from the CPAP machine. Holding you meant you were finally remembering to breathe on your own.

Snuggling you in the special care nursery because you were a NICU graduate. Almost having you home....

Coming to the step-down unit and being able to get you out of your crib all by myself. I'd figured out those wires and lines and could hold you for as long as I liked. And I did. Little did I know it would be awhile before I was able to hold you again.

After your heart surgery, it would be 8 very long weeks before I could hold you again. The day you finally had your pacing wires removed after you got your trach was like a holiday! I couldn't wait to get to the hospital that day. I held you for an hour. My arms ached and hurt so badly, so I did what I had to do. I held you for another hour and thanked God for every second I had with you, forgetting how heavy my arms felt.

After that day, holding you was a challenge. Your little body had become so used to being poked and prodded that being held wasn't fun for you anymore. Most days when I tried, it ended up with you turning blue and me crying. But we rose to the occasion. Hard work from both of us finally paid off.

Easter morning, you were Seven months old. You let me hold you. And for the first time in your life, you fell asleep in my arms. No longer afraid of pain, you found comfort and love in my arms. We had made peace with the terrible, yet necessary infancy you had endured.

From here, the snuggles get blurry. We snuggled on the couch together watching TV. I held you for a second longer than I needed to when I moved you from your swing, your car seat, your stroller, your bed.

You learned to hug me and kiss my cheek. You signed "I love you" to me every single day.

The last two times I held you are burned into my heart forever. They were less than an hour apart. Breathing fast, clutching my neck and sleeping on my shoulder. Your body conformed to my chest. Mother and child, we were one unit as I rocked you and listened to your breath in my ear.

An hour later, I would hold you once more. I held you until my arms ached, then held you for another hour. I could not let you go, but I had to. You were gone. And I knew when I let you go for the last time, I would never hold you in my arms again. I smelled your little baby head for the last time. Kissed your tiny face.

I still feel you in my arms. I hold you in my dreams. I hold your memory with me every day. I carry my love for you in my broken heart. I will never let you go.

Thursday, May 13, 2010

I Hate That I Can Relate

On our porch is an old metal mailbox. I don't know why we kept it. Probably because hubby thought he might be able to recycle the metal and hasn't gotten around to it, but for whatever reason, it sits on our porch. If the front door is open, I can see into the mailbox and about 2 or 3 weeks ago, a couple of house finches moved in and started building a nest. I let the boys know to stay away from it so the birds would stay and we could watch.

On Tuesday, when I came home from work, Rob let me know that the boys were messing around and knocked the mailbox over. They put it back, but it was too late. The baby birds had been jostled out of their nest and were laying inside the opening of the mailbox. Sad. Very sad, but what could we do? The little naked bird wasn't moving. We figured nature would take its course and that was that.

The next morning, yesterday, I had the front door open, watching it rain and listening to the quiet. I looked up to see one of the finches bringing the babies something to eat. It looked in the nest and hopped in and our several times. Confused. Stressed. It began a sad warble. I knew it was mourning the loss of its babies. I nearly burst into tears. I was relating to a bird that had lost its young. It was too much for me to take and I closed the door.

That afternoon, the boys came home from school. It was my night off, so Brandon and I decided to do something fun in the yard. As I walked out of the door, something caught my eye. The baby bird that had been just inside the opening of the mailbox was now laying outside, on the door of the box. Odd... Then I saw something happen. The bird took a breath and moved! No way was I seeing this. It was alive? I yelled for Rob, who put on plastic gloves and gently moved the birds back into the nest. Alive. All of them alive.

My routine was broken this morning, so I was not home to watch for the parents to return. I hope and pray that they do. I hope that in a few weeks, I am seeing little feathery babies fly out of the nest on their own.

I have a recurring dream. That Tommy never died. The doctors tell me it's all a mistake. Take him home. A second chance at his life. I always wake up wanting to fall back asleep for just a few more minutes to hold him again. Seeing that baby bird was like watching my dream. It wasn't dead, just injured, fallen out of its nest and its mother unable to help it. I am practically begging the universe to send the mama bird back to her young. To give them the one thing I can only do in my dreams. Know that my sweet boy is still alive, even if only in my heart.

Monday, May 10, 2010

Bittersweet Mother's Day

Yesterday I was awakened by my 11 year old bringing me breakfast in bed. He fixed me a bowl of Corn Pops and replaced the milk with Yoohoo. It was actually pretty good, and a feast compared to last year! Last year, I went to the grocery late Saturday night after I got out of work and bought a ton of easy to make breakfast foods. Microwavable croissants with sausage, egg, and cheese, donuts, juice and milk, and a few other things. I was hoping when they woke up and saw the breakfast things, they would bring me a beautiful breakfast in bed. Wrong! They woke up, saw the loot and got down to business, eating every morsel. I woke up on my own several hours later to a rumbling stomach and no Mother's Day breakfast. So for him to at least bring me a bowl of cereal was more than generous and thoughtful this year!

Right after breakfast, I did a quick update of Facebook to see what everyone was up to for the day and discovered on of my best friends had a very sick daughter. Her daughter has a long history of getting very sick very fast. She told her mommy it was time to say goodbye. She's better now, but at the time, I turned to Rob and told her what she had said to her mom. Remembering what we had gone through with Tommy, watching him sick and finally saying goodbye overcame both of us. It's so hard not to miss him on a regular day, but this was Mother's Day. A day to spend with your children and celebrate being a mom.

Tommy wasn't my only child I wasn't able to hug yesterday. My oldest is in another state, adjusting to life there. Of the 4 pieces of my heart, half of them were missing.

I didn't have time to dwell on being sad. I had work. I was hoping to treat it like any other day, but when I took a break, I saw updates on Facebook about their great Mother's Day, and I also saw updates from moms like me who had achy, empty arms. It was a slow day at work, so I did the only thing that would make the day right. I went to the parking lot and blew bubbles for Tommy. I carry them in my purse for occasions like this. Sometimes I start missing him so much I need to send him bubbles to show him how much I still love him.

The rest of the day went by quickly. Soon the rest of May will be gone and school will be out. Both boys have summer birthdays to look forward to. I should be okay on nervous breakdowns until July. On July 17th, Tommy will have been an angel longer than he lived on Earth. Don't know how I feel about that yet. Forget about August and September. I'm just going to crawl under the blankets and come back out in October. 

I made sure and hugged my boys a few extra times yesterday and tried my best not to yell. Some days it's hard to be a mom, yelling at the kids to pick up their mess, stop picking on each other, take a bath, stop picking their nose, etc. But you've got to be thankful for those moments. It can be gone in a heartbeat.

Wednesday, May 5, 2010

I Lied

I lied to a customer last week. Since then, I realized I've been lying to myself. I work at a gas station about a block behind the hospital. Ambulances fly passed the front of the store with lights and sirens blaring at least once a day. I've learned to ignore it for the most part. He asked me if the ambulances bothered me. I told him they didn't and that I was used it it after a year. As soon as the words left my lips, I knew I had lied.

Since then, I've become more aware of them. I really had blocked them out, but now I can't stop hearing them. The worst is seeing one with just the lights on, no siren. It makes me wonder why it's no longer an emergency. Tommy only ever rode in an ambulance once, for transport, not for an emergency. No sirens or lights.

After spending more time in a hospital than at home for 3 years, you hear the sounds of the hospital all around you. Sirens were part of that life. It reminds me of that part of my life. Part of my life that I miss very much. Most of the time, it was a blessing when Tommy was in the hospital. I'm not saying why he was there was always a good thing, but when it was something planned or routine, I adored spending a day or two alone in his room with him.

When he was in the hospital, he was safe. It meant I could get a break. At home, I was his caregiver 24/7 and could not leave his side for a shower, to put away a load of clothes, a nap. Nothing. In the hospital, he was hooked up to monitors, had nurses steps from him at all times, and doctors on the floor. I was free to go get a meal, go for a walk, and relax for a few minutes. Sometimes I would have Rob drop off Matthew and Brandon and we would hang out in Tommy's room watching movies, having snacks and going to the Atrium to play when it was open.

Sometimes we would go to the roof above Children's ER and look down at the ambulances.

When I hear the sirens now, it reminds me that someone is hurting. And then I realize it's me.

Saturday, May 1, 2010

Two Years

Two years ago, our lives changed. We would find it had been creeping up on us for a long time, but the shock of what happened leaves me grateful every moment that my husband made it through alive.

For several months, Rob had been having strange symptoms, none that seemed related to each other. It started with him gaining weight and despite eating like a bird, the weight kept piling on. He was well over 350 pounds. He had a strange tickling cough that wouldn't go away. His shins began to swell and he developed weeping blisters. He couldn't sleep in bed anymore. He started sleeping upright on the couch because when he laid down he couldn't breathe. He went to his doctor about his legs because we thought it could be an infection. The doctor swabbed for MRSA, then told him "his girth was restricting blood flow to his legs. Lose weight". Then his legs were wrapped with an ace bandage to constrict the swelling and he was sent home.

Life began to get really hard for him. He couldn't walk up a flight of stairs without getting winded. He came home from work every day, sat on the couch and fell asleep. He was exhausted. Tommy was in the hospital around this time having a scheduled surgery to widen his airway. My mother in law was in town to help out with the boys. I remember the three of us arguing because Rob didn't want to visit Tommy. Turns out it was it was because Tommy's room was at the end of a long hall and Rob was having great difficulty walking that far. He eventually went that night and I have some great pictures of him leaning over Tommy's crib.

Tommy was only in the hospital for a few days and came home on Monday morning. That evening, Rob felt ill. He was having a hard time breathing, coughing and felt chest pain. We both felt like maybe he had bronchitis some other lung infection. We discussed him going to our doctor the following morning, but he said he felt sick enough that maybe he should go to the ER. He said he felt well enough to drive himself, but I needed to come with him. He wanted me to do the paperwork and insurance, and I know he wanted me to keep him company.

Once we made it to the hospital, he could only walk a few feet without having to stop to catch his breath. I tried to go get him a wheelchair, but he insisted to just give him a second and he would be okay. He stopped several times to catch his breath. It took us about 15 minutes to get into the door. Once I got him settled into a chair, I went to sign him in. I told the nurse he had shortness of breath and chest pains. They took him straight back. A pulse ox showed his oxygen was low. He was put on the monitors in a room and the doctor ordered an EKG.

Everything started happening very quickly after that. An EKG takes just a few seconds to do and the results are printed right out. The tech turns to the nurse and whispers something that only I heard. "He's in Afib". I knew from having a heart kid that Afib was NOT a good thing. I knew it was an irregular heartbeat, I just didn't know HOW bad. As it turns out, it was very, very bad. The top of Rob's heart was quivering instead of beating. His heart rate was well over 200. Rob's heart was not working properly. The doctor said Rob was not having a heart attack, but that his heart was failing. They had to get the quivering under control right away. They admitted him right away. The heart center was a block away from the ER. They took him by ambulance.

He was given several medications to slow his heart rate and to start pulling fluids from his body. He lost approximately 20 pounds in 5 days just from his body letting go of the fluid. The official diagnosis was congestive heart failure with atrial fibrillation. Now they had to find the cause, and get his symptoms under control. A-fib is very dangerous because the heart is not pumping efficiently and can cause blood clots. He had ultrasounds of pretty much his entire body to look for clots. The first time he fell asleep in the heart center set off alarms. His oxygen was dipping into the 80's when he slept. Putting him on oxygen didn't help. He wasn't breathing when he slept. They brought in a CPAP machine and fitted him with a sleeping mask. It was very tricky and finally we had to start letting him fall asleep wearing the mask and turn on the machine once he was asleep. He didn't get much rest. His medications had him running for the bathroom every hour to let go of more fluids.

After 3 or 4 days of medications to correct his A-fib, the doctors decided to do a trans esophageal echocardiogram, a TEE. Rob would need to swallow a probe so that the doctors could examine his heart from his esophagus. Basically it is an ultrasound done as close to the heart as possible, without all of the tissue, bone and muscle to pass through to get a picture. Rob had to be knocked out so they could get the probe down his throat. Typically the throat is numbed and the patient just swallows the probe while awake, but Rob wasn't able to without gagging.

He came back to his room with large red marks on his chest and back. Medication wasn't able to fix the irregular heartbeat so Rob had to be cardioverted. His heart was stopped and then restarted by shock to put his heart back in normal sinus rhythm. We were told it was a wait and see thing. The longer his heart stayed in normal sinus rhythm, the better chance he had of it staying in normal rhythm and not slipping out again. Praise God, it's been 2 years without another episode of A-fib!

CHF caused us to make some serious changes in our lives. One of those things was diet. Low sodium is necessary to keep fluid from building back up again. CHF is forever. His heart is damaged and there is no going back. It will never pump efficiently on its own again. Medications are necessary to keep his heart working properly. He takes 5 different medications a day to keep him going. The other big change was being told that Rob should no longer work. He needs have the least amount of stress possible in his life and on his heart. No standing for long periods, no sitting for long periods. No extreme temperatures. No stress. No salt. Relax. Walking is good, but take it easy. Basically the only thing he needs to do in life is chill out and take it easy.

Funny how taking it easy makes our lives very, very hard. It leaves it to me to work full time while he watches our kids. That is more stressful than working in my opinion, but there is not a job available he can do that would not tax his heart or his stress levels. We make due with the life we have.

We've learned to slow down and take nothing for granted. Nothing is too hard. Nothing is THAT important. Between losing Tommy and nearly losing Rob, there's nothing we can't face. Our biggest obstacle has been that we are without insurance. Thankfully, his medications are generics and only cost us around $20 a month combined. We also recently found out he can get his blood levels checked for $15. He takes Coumadin, which is a very dangerous anticoagulant. Too much in his system and bumping himself can cause internal bleeding (another reason he shouldn't work). Not enough, he is at high risk for blood clots. He grew a beard because he's afraid to shave. Cuts bleed longer and he doesn't want to risk it.

We've applied for disability, but we've been told he doesn't qualify. We've appealed twice and retained a lawyer. Next step is to take it before a judge, but the docket is full until next spring, so we wait another year without medical care for him. We own a pulse oximeter and check him regularly. He also weighs himself daily and checks for signs of fluid buildup. Our biggest saving grace was his CPAP.

Rob's CHF was caused by severe obstructive sleep apnea. Snoring and not breathing while he slept caused his body to startle itself awake so many times at night that his heart overworked itself. Two things scared us about this whole experience. First was being told in the ER that if we had waited to see his doctor, he wouldn't have made it and probably would have died within 2 days. The other was without using a CPAP machine, he would probably have a heart attack in his sleep and die. That machine literally saves his life.

I don't know what I would do without Rob, but because of the nature of his disease, we face it every day. If he gets winded, feels lightheaded or becomes ill, we panic. A simple lung infection could kill him because his body is not 100%. All of this from snoring.

Wednesday, April 28, 2010

A Peek at Me

I'm more than just a mom of special needs kids. More than mom to an angel in heaven. Problem is the "more" part kind of gets lost sometimes. I keep trying to be more of an adult and less of a mom, but mom seems to shine through no matter what. I know I will always be a mom, but I won't be a mom to young kids forever. Someday they will grow up and I want to be able to have an identity outside of just being their mom. So here is a little peek at me. Rene. The person, not the mom everyone knows.

I wear obnoxious and funny tee shirts. I have one that says "The Zombies Are Looking For Brains, Don't Worry, You're Safe", and another that says "You Don't Have to Be Crazy to Work Here, They'll Train You". I wear them both to work on a regular basis.

I am a technology junkie.

My nickname is "Internet Queen" for my keen ability to find obscure things on the internet in a matter of minutes after friends and family have searched for hours. I have internet access 24/7, even on my phone just so I can look things up as they cross my mind, as they often do.

I'm slightly obsessed with my status updates on Facebook. I can use them for good....and for evil.

I'm a tomboy at heart. I rarely wear makeup. Mostly because I'm too lazy to put it on. On the other hand, once warm weather is here, I ditch my shoes for flip flops and paint my toenails. I'm a t shirt and jeans kind of girl. Don't even own a dress, much less heels. Nope, just one pair of tennis shoes for work and more flip flops than one person should be allowed to have. Dressing up can be a challenge. I clean up okay, but actually finding something I own that appears dressy is the problem.

I back talk to my boss. I think he likes it.

I wear my hair in a ponytail with bangs. Mostly because it's stick straight, falling out and so thin, I can't do much else with it. I kept it really short for years, but hubby mentioned he liked it long about a year ago, so I decided to grow it out. I dyed it black on a whim over New Year's and I love it more than anything I've ever tried. Except it's been 8 weeks since my last dye job and I have gold roots. Time to cough up the $5.00 for more dye.

I'm religiously confused. I was raised Fundamental Baptist, joined the Christian church in high school, became a pagan around the time I was 21, and eventually baptized Mormon. I've come to accept there is no set organized religion for me. It doesn't matter what path I walk down as long as it gets me to the same God that I know and love.

I can make sushi.

I love crime drama. Currently, hubby and I are watching the series "Bones" on Netflix. We started with the pilot and are watching them all in order. We cover about 3 shows a night. We did the same with CSI and Law and Order, SVU.

I'm a cat person. I can't stand dogs.

I'm not crafty, but I am creative.

I want to travel. Everywhere. The world fascinates me. My dream is to buy an RV and drive to every obscure town in America. I want to taste the food, hear the accents, see each and every river and stream on the map. I don't know how to drive yet.

I'm 38 and I'm pretty sure when I grow up, I'll still want to be working in a gas station. As a matter of fact, I want to own my own store. I love it!

I'm sarcastic. As a matter of fact, everyone I'm related to biologically is sarcastic as well. I think it's a dominant gene in our family tree. We also love to laugh. I am the oldest of 6 kids and our mom is the ringleader. You never know what's going to come out of any of our mouths at any moment, but once you've gotten over the shock, you're probably laughing right along with us.

I work with my sister. I'm 5 years older, but we look so much alike that customers that have known us for years are shocked to find out that there are actually 2 of us and not just one person working all day long. People pick up conversations with both of us that they were having with the other, only to find out we are not the person they were talking to originally. The best part is when one of us stops by when the other is working and someone realizes there are two of us. Then to find out we are not twins is even funnier. Mostly its a lot of pointing back and forth with a confused look.

So there are a few things about me. I hope you enjoyed getting to know ME a little better as a person and not somebody's mom.

Sunday, April 25, 2010

Does Not Play Well With Others

I need to vent. Really Vent. There are people in my life that don't have any business there. I've tried to like these people, but I can't. Maybe I can smell the B.S. on them. Whatever the reason, I've decided I don't have to like anyone. It seems to me that every time I've had a real-life, honest to goodness, living, breathing friend, they've taken advantage of me, annoyed me, lied to me or flat out hurt me. I don't have any more of those living, breathing friends, and honestly, I'm sick and tired of trying to make them.

The ones that I can count on live all over the country and I've never met any of them face to face. We email, text, Facebook and so on, but I've never met anyone. Truth be told, it scares me. I'm fairly certain that we would get along wonderfully if we were ever to have the opportunity. But after what's happened to me lately by someone that was supposed to be on my side, I'm a little gun shy in the friend department. Sure, my online friends keep my deep dark secrets for me and I'm there for them if they ever need a virtual shoulder to cry on. Why can't I meet these people for real instead of online?

Instead, the people that cross my path pretend to be a friend to my face while twisting the truth about what they think are facts, then can't understand why I'm upset. I'm so done with the whole friend thing. Seems like I can't trust anyone I meet in person these days. I seem to draw losers like flies to honey. I hate that. I long for just a couple true friends. Someone I can call up and go to the grocery with or take the kids to the park together. Someone I can share secrets with and know they will stay a secret. Someone that won't spread rumors about me or try to break up my marriage.

The virtual world has been good to me. I've met MANY wonderful people and have few I consider to be close friends. But they're so far away. I guess I'm the type that doesn't play well with others. I'm not sure if I ever will be the type that will.

Monday, April 12, 2010

Missing So Much.

I miss my old life. I miss the smell of the hospital. I miss the elevators. I miss knowing so many people in the hallways. I miss therapy. I miss deliveries of medical supplies that made my house look like a hospital.

I miss getting up every morning and doing trach care. I miss setting up the feeding pump and hearing it beep to be refilled at 3 in the morning. I miss the sound of the humidifier and concentrator. I miss sponge baths and the smell of baby shampoo.

I miss the sound of trachy belly laughs. I miss the sound of the suction machine. I don't miss the smell of the suction machine, though. I miss the clack-clack of the swing. I miss the sound of your toys. I miss the smell of your head.

I miss tripping over oxygen tubing. I miss adjusting your trach mask every ten minutes because you liked to chew it. I miss your stubborn, silly attitude. I miss your smile.

I miss your eyes.

I miss your scars.

I miss the sound of oxygen tanks clanking in the back of the van.

I miss the cuddles.

I miss the kisses goodnight.

I can't listen to "Peanut Butter Jelly Time" without crying.

I miss "Itsy Bitsy Spider".

I miss your adorable cheeks.

And your little chicken legs.

I miss your blue lips.

And messy straw colored bed-head.

I miss your laugh.

I miss your stinking attitude problem when you didn't want to stack blocks or color.

I miss the way you lit up when Sarah brought out the giant gumball toy.

I miss the look of satisfaction when you figured out how to manipulate a new toy.

I miss your beautiful, beautiful smile that lit up the room and warmed my heart.

I miss being your mom. I miss the chaos. I would gladly take back that life again. I would spend every day in the hospital with you if I had to. I would do trach care forever and a day. Feed you through your tummy without batting an eye. Push you in a stroller until I was old and feeble.

I would deal with our lives being filled with therapists, doctors, specialists and advocates. I would fight with the pharmacy every single month when your prescription was denied yet again. I would deal with the machines. I would go on 3 hours of sleep a day.

I would stack medical supplies to the ceiling in every single room.

I would sacrifice everything I have, everything I love, the air that I breathe.

For one more moment with you.

Monday, March 29, 2010

Stress, Insomnia, and a Bunch of Rambling

I'm tired. So very, very tired. I am yawning repeatedly and my eyes are watering from lack of sleep. And yet, every time I lay my head to the pillow, I cannot sleep. My mind wanders and I can't relax. I've tried looking up obscure things online trying to bore myself. I had a bowl of oatmeal, hoping the carbs would make me sleepy. Both things have physically worked. I'm exhausted! And yet, that little switch in my brain refuses to switch off.

It's stress. It's the state of my kitchen. It's the 10 hours I worked yesterday. Remembering to make a doctor's appointment for Brandon. Wondering when and how I'm going to dye Easter eggs with the kids since I don't have any days off between payday and Easter. Surely I can come up with five dollars for eggs for them to color! Of course, even if we do color eggs, I won't get the joy of celebrating with them, since I work every single stinking Sunday, usually 10 hour days. I've missed out on every family celebration because they're held at lunchtime on Sundays. It means getting out of bed 2 hours earlier than usual after getting home at an ungodly hour. It will mean on Sunday that we must hurriedly hunt the eggs, then I will get to swallow a little food before groggily heading into work while everyone else continues to celebrate.

Sorry if it sounds so bitter. There are no fun times lately. I worked Valentine's Day, St. Patrick's Day and now Easter. I work with my sister and we have one other employee (who happens to be the owner's brother). My sister has off every Saturday, he has off every Sunday. Sure, I have off my two days during the week and MOST of the time, I don't mind my schedule. Really, just for once, I wish I had somebody accommodate me. I'm whining now.

Home life has been just as hard as work lately. Getting the boys to take out the trash is like pulling teeth. It doesn't help that it's starting to feel like the only time I see them is when I'm yelling at them to get out of bed before they miss the bus, or yelling at them to take out the trash. I need a vacation. From everything. Many people ask where does hubby come in to play with all of this. Sometimes you pick your battles, and it's looking like I've lost the war on this one. Sometimes I wonder if we live in the same house because it's what we want or because it's just easier this way. It's been the same way, day in and day out for 13 years now. It's not going to change. Hence, another reason for my stress.  It's better we don't get into that one. Between his own poor health, his own insomnia, and his own stress, we are merely coexisting and doing the best we can. If he helps every now and then, great. If not. Well. There's always tomorrow. Why pick a fight over who's going to tell the boys to take out the trash when I can just deal with it myself and move on?

I can't stand much more of this lack of sleep. I want to go to bed. I really do. My sleep schedule is so confuzzled that my body doesn't know what the sun looks like anymore. I wake up every day at 7 to put the kids on the bus. At 7:30, I come home and my brain is going a million miles an hour, so I check my email, read, try to relax for an hour or two until I'm so tired I can't stand it. I shuffle to bed around 10ish (yes, that is a.m.) to try to sleep before the kids get home from school. That's until my phone rings, there's a knock at the door, or I get overheated from the sunlight trying to penetrate through my window. Sometime between 2 and 4, I get up. This usually gives me about a 4 hour nap. Then I have lunch, shower, look in the kid's backpacks and then we are in the car by 5:15 to take me to work. (unless it's the weekend, then I'm going in anywhere between noon and 3) Work is until midnight. Hubby comes to pick me up and we do the 30 minute drive home...unless there is the need to stop by the grocery or something like that. Typical nights, we roll in the drive around 1 in the morning. Toss the kids back in bed, then fix dinner for hubby and me. Do a load of laundry while we eat, then toss it in the dryer on the way to bed. Sometime around the 3 a.m. mark. Up again at 7. That's 4 more hours of sleep IF I can fall asleep.

It wouldn't matter if I drove (which I can't, as in, never learned), because I would still be on the same schedule. I dread Spring Break. While I do love sleeping in, my kids have not gotten the hang of it. That is why on Thursday night, I finally have a clean kitchen and by Saturday morning, they've trashed it again, just in time for me to head into work and no time left to clean it again until Wednesday. Thank you, sweet children. Sure, they're big enough for chores. YOU come make them do them. Make sure Brandon has his medication. You'll have a 50/50 shot he's going to listen if you do. You'll have to bribe Matthew. Lately he's discovered his Mp3 player. No chores, I confiscate. Worked so far. Of course, until Brandon comes behind him and dumps a bowl of cereal in the middle of the floor, covers it with a shirt and tells nobody for 4 hours.

It's approaching 11, my mind is still full of racing thoughts and even blogging them out isn't very affective today. My head is wobbling as I type. My eyes crossing and blurring. And yet, I still can't find my off switch. It's going to be a long day.

Diagram of Tommy's Heart Defects

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