A time out for moi

I'm not going to post about my 20 little things today. Besides saying one thing -- I need to do better with all of them, especially my daily ones like drinking more water, setting aside 30 minutes for prayer, working out at 6 a.m. I'm struggling now in a sea of busyness. Some of which I bring upon myself.

Case in point: I took my little Elmo-crazed 18-month-old to see Sesame Street Live this morning. Quite the impulse move. Looking for tickets yesterday, I threw in today's date, thinking what the heck. I asked for the best seats, just to see what would come up. And what did but the front row! The price was higher than I wanted to pay. But I began daydreaming about holding Luke in my lap, his favorite characters dancing right in front of us. Sold.

It was so neat. The Fox Theatre in downtown Detroit is stunning, so stunning that it knocks me over every time I step inside. I urged Luke to look up! up! up! at the immense ceilings, the ornate trimmings, the gold, the blue, the carvings. He did! He gazed up with me. I set him down and let him roam a little. Seeing him, so small in this enormous place, he was like a weensy little speck. My speck.

We had time to kill. I didn't want to sit until close to showtime. We looked at the merchandise booth, where Luke's eyes lit up at all the Elmo possibilities. Shirts, dolls, flags, hats, and a ball. He crowded in to point at them with the other little kids. Me, being a schmuck who's not opposed to economic stimulation, whipped out my wallet to get him the ball. It was just too cute.

He hugged that ball the rest of the morning. We sat with about seven minutes to show time, and our seats were on the aisle in the front row center. I don't know if I've ever sat in the front row at anything before! I whispered to Luke that soon Elmo would be dancing and singing right in front of us. He gazed at the stage in awe.

The show was 90 minutes, with one intermission. Luke did well the entire time. Ten minutes in he asked for snacks, so we dug those out of my purse and ate while we watched the life-sized Muppets boogie. He clapped after each song, somehow holding onto the ball at the same time. At the very end, he started to wear out. He wanted down. I gathered our things, thinking we might need to bail, but he settled down just in time for the end, when confetti and streamers shot out from the corners of the stage toward the middle of the audience. Given our seat location, we were in the direct line of fire, and the bulk of the streamers landed directly on us. I thought this was a hoot. Luke did not agree. He started to cry.

So, we left with some tears running down Luke's face. But as we walked up the aisle, he recovered enough to look over my shoulder and wave bye-bye to Elmo.

When we got home, I asked him to tell Da-da who he saw. He looked at me like I was crazy. Totally blank.

"He's forgotten already," I said.
"Uh-huh," said my husband, who thought it was silly of me to take him.

He might have forgotten. But I know the memory of him in my lap, his little head right under my chin, his face gazing up at the music and lights, that's something I won't forget that for a good long while.

A little secret about me

Before we go on with the list, I want to let you in on a little secret.

I have a cause.

Yes, I am the person who is going to annoyingly ask you for money or to come to an event or talk about the cause at a party when you simply wanted to know what beer they have on draft.

So what's the cause?

I'm a heart mom.

And in regular English, what that means is I am the mother of a baby born with a congenital heart defect. In this case, three CHDs.

Now before we go too deep in the story, let me tell you this -- my son is amazingly fine. His heart is now whole and basically perfect. In the world of heart moms, I seriously have the lamest story you can have. My son was born, he had to have surgery, he had surgery and he's been and should continue to be fine. So why am I making such a big whopping deal about it then, right?

Well, it's not so much about me in this case. Or Luke.

Through learning about heart defects because of Luke, I've met some other, much more amazing women and men than I. These people were not as lucky as me. Their kids have needed much more intensive care. Their hearts are much more fragile. They need multiple surgeries just to SURVIVE and then even if they do, their heart is always going to be at risk for major complications. And many kids don't live at all. Heart defects kill more kids than all forms of pediatric cancer combined.

Think about that.

How much more often do we hear about kids with cancer? And seriously, is sucks majorly that kids get cancer. It's not about that. It's about the fact that heart defects are just as deadly -- actually much MORE deadly. And so people should know about them and fight for those kids, too.

So. I'm getting involved in the CHD community because I know that so many kids have to fight much harder than Luke did. And some parents don't get to celebrate first birthdays, or take their kids to the beach, or capture them saying the ABCs on video. And even though Luke is fine know, it also sucks majorly that he had to have his chest cut open when he was six days old to have open-heart surgery. There are few feelings more terrible and helpless than watching your infant being wheeled away into an operating room, crying his little brains out, no clue that the world is not so awful as it seems or that is mama and dada love him to freaking pieces. It broke my heart.

So. I hope one day we'll know what causes CHDs so fewer parents have to live through that moment and fewer babies have to go through life with a scar on their adorably soft chests.

That's my cause.

Now, the quick story: Luke was born on July 18, 2008. We knew at that time that he had a ventricular septal defect, which is a hole in the heart. We hoped it was rather small and that it would close on its own. Many do. After the labor (I do not recommend labor) and birth, the NICU team took him away, those big MEANIES. When I finally saw him a few hours later, they told me the first dose of bad news: the hole was bigger than they thought. He'd probably need surgery, but not for a few months. Luke spent that first night of his life in my room, where I broke the hospital rules and pulled him all bundled into my bed with me to sleep for a while in my arms. How could I not?

You would have done the same thing.

The next day, the cardiologist came for a visit. He wanted to take a closer look. He being good at his job found something to be a little uneasy about. And so he told us: Luke has coarctation of the aorta. The part of his aorta that leaves the heart and curves to deliver blood to the right arm and lower half of the body was basically kinked like a big garden hose. It wouldn't be a big problem for a few days, when this magical little thing called the PDA would close. Until then, the heart would work. When it closed, it wouldn't, and Luke would go into heart failure. The diagnosis: sturgery as soon as possible. They whisked Luke away right then back to the NICU, where he'd wait for a helicopter to come and pick him up to fly to another hospital.

That sucked.

Once there, he spent six days in the NICU.

He wasn't always thrilled about that.

Then on July 24, early in the morning, he underwent open-heart surgery. It was supposed to take four hours, but took only three because our surgeon is a serious rock star.

Afterward, he looked like this.

That sucked, too.

But besides one pesky blood clot issue, Luke recovered like a dream. Off one machine, than another, than another, than the ventilator, then the drugs....

We were off the PCTU floor, a floor just for kids who have had heart surgery, in three days.

We spent another four in the general care area. Luke started to eat. He started to look .... healthy.

And on Aug. 1, with more relief and excitement and tiredness than you can image, we went home.

And since then, he has been almost normal. We got off the meds quick. The surgery was perfect. There have been no complications. He got a few special vaccinations to ward off RSV, and he got to be front in line for the H1N1 vaccine. But other than that, our story of worrying about Luke's heart should be over.

Some people probably think it is odd than that I'm now getting involved in congenital heart defect awareness. It can sometimes seem like a competition sharing these stories, and I can feel like mine isn't dramatic enough or Luke was sick enough to qualify. Well you know what? It still was no fun, and it is still nice to know that parents going through things like this can now find better support than I did.

And more people should know about this because, honestly, it is much more likely to happen to your kid than most anything else. 1 in 100, folks. Maybe if we spread more awareness about that, our country will devote more money to finding out WHY that is happening. Or find better ways to save these kids, so fewer have to die. Right now, only a fraction of a penny of the money spent on medical research goes to heart babies.

That's my cause.

I will shut up now, step off my soap box. I really don't want to be all in-your-face with the preachy stuff. I hope this doesn't come across that way.

But this is part of my story and part of my life now. So it should be a known part of this blog.