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.

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Diagram of Tommy's Heart Defects

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