A Delicate Balance

A couple of days ago Caleb was sitting on the couch when he asked, seemingly out of the blue, "Mommy, when I get older and bigger I won't have Muscular Dystrophy any more?"

My heart was immediately in my throat, along with a flood of possible answers, and questions of my own. How do I possibly convey to a 4-year old that this is not something he will outgrow, that he will have likely MD for the rest of his life unless by some miracle there is a cure... How do I possibly express this while still giving him hope that anything is possible and that life is still worth cherishing, despite the challenges he will face... How do I look into his bright eyes and tell him that because his body doesn't produce ONE STINKING PROTEIN, his muscles will never work the same as other people's and he very likely won't live to be an old man?!

The flood of questions, answers and emotions coursed through me in mere seconds. Before I knew it, Caleb was talking about Lego Star Wars, without me being able to say a single thing. I knew this was a vital conversation that we needed to have, so I brought him back to it.

"Caleb, you asked a very important question about Muscular Dystrophy, and it's time to talk about it."

"What, mom?"

"Well you asked if you wouldn't have Muscular Dystrophy when you get older and bigger. But Muscular Dystrophy is part of your body, and it's something that you'll always have, even when you're bigger. So you'll always need some help with things like walking, and will need to use things like walkers or wheelchairs to get around."

"Mom, I think when I get bigger I won't even use a walker."

"Oh really. What will you use, then?"

"I think I'll just use my legs and feet and walk all by myself."

As the tears welled up, the only response that seemed remotely close to being correct was, "I sure hope you're right, Caleb."

I know this is just the beginning of questions we will have to answer for our amazing and insightful little boy. God willing, some day he won't be so little any more when we have to give him more answers. We may not always have the right answers, but all we can prepare ourselves for is to try our best to find the delicate balance of helping our son face his reality while maintaing hope and joy for his future.

Happy Valentine's Day!

Look, Caleb's Famous... Well, Not Really.

Another parent is putting together some video of kids with Ullrich so that doctors can better recognize the signs and symptoms to come to a proper diagnosis. Here's the video we put together of Caleb.

Caleb's Bad Guys

Remember Little Kangaroo? If not click here to find out a little more about our friendly marsupial. Little Kangaroo has disappeared and has been replaced by Caleb's "Bad Guys". Caleb usually has 10 with him, but sometimes there are as many as 20. They are his friends and protect him from other Bad Guys that are trying to get him (I think in his mind all the guys that fight are "bad" guys - he doesn't quite get the idea of good guys or superheroes). They can all fly, but don't have swords or guns. One has laser beam hands, another has boosts in his feet. Also, next time you're around Caleb, be sure not to make him angry - he now has fire that comes out of his hands and ice that comes out of his mouth (he says "I will fire you!").

Thank You, Dr. Reinhardt

Dr. Reinhardt has been Caleb's pediatrician since the day we brought him home from the hospital. She has been with us through his successes, and some of his toughest times; through the diagnosis and learning with us what it all means. She has always worked with us to create a plan for Caleb, realizing that protocol didn't always work for him. It has been clear to us that she was not only caring for Caleb as a patient, but for him as a little boy, and for us as a family. She has been a wonderful pediatrician for Caleb.

But, Dr. Reinhardt is moving out of state to be closer to family. Although I completely understand her motivation for leaving, she will be missed. Her future patients are very lucky to have her.

Good luck in your endeavors!