Tyson the Warrior Turns 1

That picture tells it all.

Look how far my boy has come.

Tomorrow, he turns 1. With apologies to Mr. Dickens, the past year has been the best of times and the worst of times.

One year ago tomorrow, we nervously awaited the arrival of our son, Tyson. The excitement was nothing like we had experienced not even two years earlier, when Sydney arrived. This time, our stomachs were queasy at the thought of bringing our new baby into the world.

Can you imagine something so exciting being so dreadful? My wife was going to give birth to a beautiful baby boy whose life would be at risk from the second he left the womb.

We knew a few months ahead of time he would be born with a significant heart problem. The doctors told us there was a decent chance he would need life-saving surgery upon his arrival. They also told us he would require another heart surgery about 4-6 months after his birth if he was going to survive.

You can read about the drama in my earlier posts. We were ecstatic when he didn’t need that immediate surgery. We were heartbroken when he struggled to eat and develop normally and we slowly realized he couldn’t wait 4-6 months for surgery and they were going to operate when he was smaller and more fragile than they wanted. We were emotionally scarred when we turned him over to the surgeon with fear we’d never see him alive again. We were elated, then shocked, then ecstatic when he made it through the surgery and began to recover.

One year later, Tyson is leading a pretty normal life. His scar is still jagged, but fading. He still takes heart medicine every day. He’s very underweight because, prior to his surgery, drinking a bottle of milk was like running the Boston Marathon and he really never developed a like for it. 

 

But those are the only signs that he is what they call a “heart baby.”

He goes in for a complete checkup next week – his first one since last fall -- and we will see how his heart is doing. We are obviously hoping for complete healing and no further surgery.

Tyson’s biggest obstacle since heart surgery has been his weight. He had a feeding tube for the first seven months of his life. Since then, he’s had a feeding regiment of supplemented breast milk or formula six times a day. We wake him three times during the night (10:30 p.m, 2:30 a.m., 6:30 a.m.) and force fortified formula into him, often against his will.

Even with that, he struggles, especially now that he is mobile and burning calories like a Hummer burns gasoline. He should weigh about 22 pounds. He weighs slightly more than 17. That’s a pretty big deficit for a kid his age and we would not be surprised if he went on some specialized eating plan after this week’s checkup.

No feeding tube, please!!!

The Budster  --- his nickname -- is showing signs of improvement in this area. He eats solid food better than his sister. I really believe when he is able to eat anything he wants he will pack on the pounds. He seems to really like food. Let’s just hope he doesn’t like it as much as his daddy.

  

He is a bit behind in his development due to all the time in the hospital and other restrictions during those first few months. For example, Sydney could probably say a couple dozen words at 1 year old, while Tyson can't say much more than ma ma and da da.

He is, however, ahead of Sydney when it comes to moving. He isn’t quite walking, but he scoots across the floor like an Indy car driver and he can lift himself up to a standing position faster than a professional wrestler after a choreographed fall. He is always moving and loves to play the worm on the end of the hook when you are trying to change his diaper or get him dressed.

In fact, he is pretty fearless. He loves to be manhandled, flipped around and tossed in the air. He gets a good belly laugh from it.

He's a really happy kid. He wakes up with a smile on his face, giggling when he sees his dad emerge from the shower. It is almost as if he knows what he has overcome and he’s chosen to really relish every day.

He loves to watch his sister do just about anything and laughs at her like she is Jerry Seinfeld working a crowd.

Believe me, she is not that funny. But the Budster is high on life. As he should be.

  

Even his scar is slowly fading. I think it will always be a visual reminder, but I don’t think he’ll be embarrassed to take his shirt off at the beach.

The kid has come a LOOOONG way. And so have his parents. The highs and lows of the past year have been draining, but we have all that much more appreciation for him and parenthood.

I have tears welling up as I write this. I am proud of this kid. He has taken a real tough situation and kicked its ass. I remember those days in the hospital when he looked like the before part of the above picture. I cried at his pain. Now I cry tears of joy for his resilience.

Tyson is where he is because 1) he is one tough kid, 2) he had one awesome mother who wouldn't let him give up and exhausted herself ensuring he had everything he needed, 3) we live close to one of the finest children's hospitals in the world, and 4) the positive thoughts and prayers of friends, families and even strangers blessed him with healing power.

Brooke and I really didn’t know if he could make it, and the outcome has been much better than we anticipated. I really feel like I have a pretty normal kid and my dreams for the future are no longer tempered.

I know this can all change next week, or next year or when he becomes a teenager. His healed heart can tear and start to leak again. Or the altered anatomy might not result in normal function. But right now, he’s just a kid who carries around a 2-inch Old MacDonald character like it is his best friend. Or a tike who likes to crawl across the floor at warp speed, grab the remote from daddy’s hand and attempt to change the TV channels, all with a devilish smile on his face.

He acts just like his sister did when she was his age, and does things hundreds of thousands of other 1 year olds will do this weekend.

Normal is good. Normal is peaceful.

I think birthday parties for kids who don't know what is going on are silly, but even I admit tomorrow is worth celebrating. The Budster has come a long way.

Happy Birthday, Tyson. You’re a warrior.