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.

Diagram of Tommy's Heart Defects

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