A Lot of Steps

Since Caleb has become more independent with taking some steps, we decided to try out his "red walker" again. Although it isn't a safe way for him to get around (if he falls he has no way to catch himself), we have been blown away with how well he has been doing with this and how far he can get around! He's so excited to show off his new found skill to anyone who's willing to watch.

Be sure to pause the music on the right if you want to hear Caleb better.

The Four Questions

Happy (belated) Passover! A few nights ago we had the opportunity to celebrate Passover at a Seder hosted by some family friends. Jeff and I have attended this Seder annually for about 7 years now. This year was Caleb's first year since he was an infant. One of the traditions is for the youngest at the table to read, "The Four Questions." I'm not sure how many Seders had a 4-year old reading the 4 Questions, but here is Caleb doing his best (which is pretty darn awesome, if you ask me :) By the way, he read this in front of 47 people!

Make sure to pause the music on the right to hear Caleb better!

Why Did the Chicken Cross the Road?

Caleb's really been into telling jokes lately... although he doesn't quite get the art of joke-telling, yet. Here are some examples of Caleb jokes:

• Why did the chicken cross the road? Cuz there was a shark under it! Haaaa!
• Why did the chicken eat the spaghetti? Cuz it was so hungry! Haaaa!
• There's a banana on the TV. Get it, mom? A banana on the TV! Haaaa!
• A monster truck. Get it? A monster truck! Haaa!
• Why did the elephant find a cheeseburger? Because the cheeseburger talked! Haaa!
• Why did the chicken cross a car? Because the chicken thinked it was a walking place! Haaa!

They might not make any sense, but they end up cracking everyone up for that very reason :o)

Disneyland!

A couple of weeks ago Caleb and I met up with some friends at Disneyland. It was Caleb's first time. He was hesitant about seeing all the BIG characters, so I told him he didn't have to talk to them if he didn't want to. I forgot to take into account how LOUD all the rides are, so he was pretty miserable on almost all the rides. When he would get nervous about stuff, I would try to reassure him by telling him things weren't real.

About halfway through the day, we were waiting in line for the Buzz Lightyear ride (the only ride that didn't have a separate wheelchair access). All of a sudden, Caleb started crying and saying, "I want to get out of here! Please, can we go?!" So we turned around and left. When we got out, I said, "Caleb, I think we need to have a talk about Disneyland. Did you know that everything in Disneyland is pretend?" Caleb looked at me with bright eyes and said, "Ooooohhhh! I thought we were really going to blast off into space! OK, I want to do the Buzz Lightyear ride." So from that point on, he had a decent time.

His favorite ride was at the end of the day... "It's a Small World." He's still singing that dang song! He was happy coasting along slowly in the boat, but it was still too loud for him, so I had to cover his ears the whole way. Next time we're bringing ear plugs!

Silly Time :o)

Oh, I wonder what happened to Caleb?

Ah, it was a trap...

He's gonna "fire" me!

Ahhhhh, he got me.

Caleb's Crew, 2010

On Sunday, February 28 (I can't believe a week has flown by already!) we participated in the 14th annual San Diego MDA Stride & Ride. The night before, it was pouring rain. I kept looking at the forecast and everything was calling for sun, but I just couldn't fathom how it would clear up in time for the walk. Luckily all the forecasts were right, and the weather could not have been more beautiful.

Over 1200 people participated in the event, 125 of which were there to support Caleb's Crew! I am absolutely delighted to tell you that Caleb's Crew raised an astounding $20,000!!! We were overjoyed that we were able to beat last year's numbers!

We were fortunate to have a photographer amongst Caleb's Crew, who documented the day beautifully. Thank you soooo much, Trevor! Below are a few of the pictures he took. To see the rest, just click here to see them on his website (www.trevorhawkinsphotography.com/caleb).

I love this photo of Jeff and Caleb before the walk!

Caleb was so excited about the cake the Grammie and Papa brought.

Happy boy :)

Look at the sea of red Caleb's Crew shirts! Amazing demonstration of the support we have from our family and friends.

Caleb loved holding Cousin Zoe's hand.

Gorgeous Day! Beautiful cause! What more could we ask for?

Caleb wanted to say, "Thank you," but then got embarrassed and just said, "Uummm," then turned his head. It was very cute.

Caleb's Crew gettin' our groove on after a fantastic walk!

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!").