Caleb's TV Debut

The vignette aired earlier this week. John Soderman, the news team-member that covered the story, and the rest of the KUSI crew did an amazing job of capturing our family. They were able to balance showing how far Caleb has come since he was first born, while still showing the extent of his weakness. They also captured what a joy it is to be around him, and of course, got a great close-up shot of his winning smile. They also were able to accurately portray Jeff's and my deepest emotions about the challenges our family faces on a daily basis - that even though there is sadness around the idea of having a limited time with our wonderful little boy, we look at Caleb's disease as our teacher; that it has taught us to live in the moment and cherish each day with him.

A Calebism tied to this: Jeff and I had watched the piece a few times with Caleb. When we had some friends over for dinner we wanted to show them the story. Caleb was in his walker in the other room. As soon as he heard the news broadcaster say, "Caleb Gold," he came running in (as best as he can) and exclaimed, "It's Caleb TV!"

For those of you in the San Diego area, the piece will be airing at least one more time - on Monday (tomorrow) at 12 noon, with a live interview with Jeff, Caleb and me right afterwards. For those of you out of town, I am trying to get ahold of a copy to post on the blog. I haven't been able to find a link on KUSI's website, but I'm sure I can find out more information tomorrow at the studio.

Caleb Riding the School Bus

Here are some pictures of Caleb coming home from school on the bus. This is the first time I've gotten to see this! Thank you, Maria, for taking the pictures. There's another little boy that has a wheelchair that rides with Caleb. His mom just emailed me (we have met a few times before starting school) and said that the boy's nurse reported that he and Caleb "chatted" the whole way home yesterday. Too cute!

Caleb Bowling

Since his birthday, bowling has been one of Caleb's favorite activities.

Here's another one with his birthday crown on that's pretty cute :)

Caleb's First Day of School

Yesterday was not only Caleb's birthday, but was also his first day of preschool. He had so much fun meeting new friends and loves his teachers. Since it was his birthday, he got to bring cupcakes for his new classmates, and got to wear a crown all day, which he was so proud of. He loved it again today, and rode the school bus home for the first time. This was another exciting adventure that he had a blast doing.

As for mommy...well, I almost held it together yesterday. Could it have been that I only had 4 hours of sleep due to the "incessant mental noise" in my head (Eckart Tolle-ism that fits me all too well)? Maybe it was seeing him being pushed in his wheelchair by a little boy and the classroom aid. What really sent me over the edge, though, was seeing one of my friends who happens to be one of the strongest women I know, crying as she was dropping off her girls (I'm a total sympathy cryer). Or maybe I'm actually just a cry baby. I dropped him off again this morning, and no tears, so it's quickly getting better.

Caleb's 3rd Birthday Party

What a fantastic day! We were surrounded by so many family, friends, neighbors, and kids galore to celebrate this wonderful and amazing little boy who just turned 3! There were cars, trains, and even a clown in the mix (which Caleb never truly warmed up to).

Fun at the Sea Life Aquarium

Today we had the wonderful opportunity of meeting Auntie Cassie at work (which is at Legoland) for lunch and to visit the new aquarium there. Caleb loved looking at all the fish - the "Nemo" fish were his favorites. He also enjoyed holding the hermit crabs and touching the starfish. There were quite a few places where it's like you're under the tanks and you are able to look up at the fish. I thought this was really cool, but Caleb wasn't crazy about it and kept asking to go out and was clinging to me and Cassie. I think this is why he liked the clown fish so much, because we went over to their tank right after one of the underwater ones, and he exclaimed, "I'm not scared of these ones."




Does it smell like fish in here? (not really, he was just making a funny face)

Thank you, Cassie, for a wonderful day. We will certainly go back. Hopefully Bub won't be scared next time.

Luke Spa-Walker

So, I realized that there hasn't been any video posted recently. Although this is footage from June, and there's nothing new, it's still fun to watch how amazingly independent Caleb is in the water. A couple of weekends ago Grammy Mumu and Papa Mickey got to see him walking in the spa for the first time in person. They gave him his new nickname, which is "Luke Spa-Walker," which I think is a perfect nickname. Shana, perhaps you can come up with some witty movie-speak about Luke Spa-Walker in a galaxy far, far away (your Star Wars knowledge is much more comprehensive than mine, as I've only seen each of the movies once).

Morgan's Birthday Party

Last weekend Caleb enjoyed celebrating Morgan's 3rd birthday with her. There was a clown named Yoo-Hoo that came. I wasn't sure how Caleb would react, but he and the other kids LOOOOVED her! She was very low-key, which was awesome, and had a very mellow bunny with her, which was another bonus. She did balloon animals, face/body painting, and bubbles. It was a fun evening, with great entertainment, tasty food, and wonderful company.



We are really looking forward to Caleb's birthday. Yoo-Hoo might make an encore appearance...

Fun With the Cohens

A couple of weeks ago Caleb's Auntie Robyn, Uncle Bruce, and Cousins Zach, Josh and Ben were down for a beach vacation. We enjoyed some fun, sun, and birthday celebrations with them. It's so fun having Caleb visiting with his long-distance family these days. He's at a stage where he knows them from pictures, remembers them, and talks about them for a long time afterward.



His cousin Josh has an extra special place in his heart for Caleb and was beyond sweet with him. He enjoyed hanging out with him and playing at the beach with him. He was also very curious about what's going on with Caleb and asked a lot of great questions about why and how he is different. It was a great bonding experience for all of us.

Thank you, Brian!!!

Brian Casola (the tall one in the "Ozone" shirt) just raised over $1800 for the MDA in honor of Caleb, and has designated the funds to go towards research for Ullrich CMD.

Brian is a friend and neighbor that joined us at the Stride and Ride in March. He was so inspired by Caleb and the walk that he decided to do a bike ride in Caleb's honor. On July 11th and 12th Brian participated in the Group Health Seattle to Portland Bicycle Classic (STP). He had a broken spoke on Sunday, which set him back about 3 hours, and he endured riding his bike in 95-97 degree heat for two days.

We're still tallying up an exact total, but we know he raised more than $1800. We are looking forward to presenting these extra funds at the telethon over Labor Day weekend.

Thank you, Brian and the Casola family, for putting your love and energy into a great cause! Your efforts have touched our hearts.

Thank you, Miss Joan!

As we are nearing Caleb's 3rd birthday, we are transitioning some of his services to the school district. Although this is exciting, this also means saying good-bye to some other providers. Last Friday Caleb "graduated" from the HOPE infant program. Miss Joan has been the HOPE consultant who has been working with Caleb, Jeff, and me since Caleb was 3 months old. In the beginning she did a lot of listening to our hopes and fears, but would also offer some insights and a different perspective. She brought consultants in that also offered invaluable suggestions, not to mention the equipment - they have provided us with Caleb's "walkers" as well as countless other pieces of adaptive equipment over the years.

One of the best things that Joan has done for our family is she introduced us to some new life-long friends. Although all of our stories differed, and we all were facing different challenges, we all connected with each other immediately.

I know we will still keep in touch, but we will certainly miss having Miss Joan coming to our home regularly. Thank you for everything. We love you!

Things Just Aren't The Way They Used To Be

Times have changed since we were kids. On Fourth of July we played with fireworks, carseats were not a requirement, and things were definitely not as politically correct as they are now. Recently I acquired some children's books that a colleague was giving away. Most of the books were older, from when her (now grown) children were young. There is one book that Caleb especially loves called 'Herman the Helper.' It's all about a little octopus that goes around helping others. It cracks me up, though, because a book like this would never make it to the printing press with present-day standards.

So in the picture below, Herman is helping his dad to hunt. In a book written today, Herman would probably help his dad get his briefcase ready for work. And, by the way, what the heck is his dad hunting? Besides, at the end of the book the octopus family sits down for dinner and eats mashed potatoes!
He helped the 'old.' These days he would volunteer with the senior citizens.

He helped the poor and needy. Today he would help those with a socio-economic disadvantage.
Although worded OK, the last picture would certainly not be allowed to print as is, or someone would be fired for sure (think of the Little Mermaid snafu). I mean, who draws clouds like that?

T-Ball

The last two weeks Caleb has enjoyed playing T-Ball on Saturdays with his cousins Brookie and Natalie, with Uncle Ryan as the coach. He has had fun playing with the other kids, and it's a great opportunity for him to experience some new things.


His first at bat experience was not as life-changing as some may have hoped. He hit the ball (with some assistance from Uncle Ryan), and the crowd cheered...which made Caleb cry. So I pushed him in his walker to first base, with him crying the whole time. He then wanted to be done, and we spent the rest of T-Ball cheering on the rest of the team from the dugout.



Today the activities switched to soccer. I forgot my camera, so I will have to post pictures another time. Soccer was much more successful, and he had tons of fun kicking the ball. Caleb's at a bit of an advantage over the other kids as far as the "no hands" rule goes, since that is an impossibility in his walker.