A few words from Joe

Following is a post from my 9 year old son.  He typed this all by himself.  I didn’t know that he could type so well!  :

Hi! I’m Joe. Andrew and I always have fun together and Justin and I have fun too. the best part about CDLS is donating money to them. Also every 2 years we have a confrence and it’s VERY fun. you get to meet new friends there and stay at a hotel. (There like the best hotels ever!) I love my family and donating to CdlS very much. To all friends (Including Dr’s and people who donate) GOOD LUCK!

6 Comments (+add yours?)

  1. Sandi
    Jul 15, 2008 @ 02:08:10

    Great post Joe! We enjoyed seeing you, Andrew and your mom and dad at the conference this year 🙂


  2. joanne
    Jul 15, 2008 @ 04:36:05

    I agree with you. The hotels that we have our conferences in are great! My children are all grown up now, but they were just like you. They met lots of cool friends who have brothers or sisters with CdLS and had lots of fun.
    My son has CdLS just like your brother only he is way older. His younger sister was so inspired by him that last year she became a doctor herself!
    I enjoyed meeting you at conference and I hope you will bring your mom, dad, Andrew and Justin to the Dallas conference (where we live) in 2 years when you are 11! I won’t tell you how old I will be then!
    Keep up with your writing, you did a great job!
    Stephens mom (Joanne)in TX


  3. Karen
    Jul 16, 2008 @ 00:02:11

    Hi Joe! I hope we get to come to a conference in 2 years and stay at one of the cool hotels you mentioned!


  4. Rhonda Harter
    Jul 16, 2008 @ 14:27:12


    That was a very sweet post. I have two sons, one who has CdLS. He is 20 and his name is Sean. My other son is 12 and his name is Clayton. We have never been able to go to a conference but you sure make it sound wonderful. Maybe one day we will be able to go.


    I have read your posts and laughed out loud at all of them. It all sounds so familiar. As I said, my son with CdLS is 20. We have done all the “Sean-proofing” too. We don’t have end tables anymore, or lamps, because after breaking two sets we wisened up. After sitting in the dark for a while we finally settled on lamps that attach to the wall. Our house is 1-1/2 stories and there was no ceiling wiring for a ceiling light and it would have cost a fortune to have someone come and wire it since the carpet upstairs would have had to be torn up, etc. Anyway, we now have light!!! We have a porch light, too, and our neighbors sometimes think we are sending out distress signals because Sean loves to stand and turn the light on and off, on and off, on and off (you get the picture).

    We have the standard gates everywhere in the house. We also have knob covers on all of the doors to the bedrooms and bathroom. We have so many locks and chains on our doors and fences around the front and back yards with locks, that our friends joke that it’s like getting in or out of Fort Knox when they come to our house. Gotta keep the kid in. When he was younger he did manage to escape once and, thankfully, someone found him on the street behind our house and brought him home. When he was younger he could run like the wind and you couldn’t turn your back for a minute. Now that he’s bigger he doesn’t move quite as fast.

    You certainly do have to be creative in the things you do. All of our furniture is attached to the wall so that he can’t turn it over. I loved your bungie idea for the chairs. He also likes to turn over the trash can so we had to get one with a lid that securely attaches so that it doesn’t go flying off – along with the trash – when it gets tipped over.

    He has reflux and is on medication to control it so we don’t have the issues with the button. I wish I had an idea about how to keep Andrew from messing with his but you have already gone through everything I thought of.

    Sean is now about 4’10” and weighs 85 pounds. He was small for a very long time. I swear we carried him until he was 12. He then took a growth spurt but I hope he’s done. He is still in diapers and the bigger he gets, the harder it is to handle him.

    I look forward to more of your entries. I sure wish these blogs had been around 20 years ago. It helps to know that you’re not alone and to see how other people keep from going crazy. I, as it seems you do too, approach things with humor. Sometimes people think I’ve already gone over the deep end because of the things I laugh about but how else would you get through every day? As you said, I don’t sweat the small stuff.

    Thank you for your openness and sharing.



  5. pjpandbp
    Jul 16, 2008 @ 15:04:58

    Thanks for the note Rhonda! It’s scary how much our cdls kids are alike sometimes, isn’t it? I swear they’re more related to eachother than they are to any of us. Humor is the only way to survive I think. There are days when you lose that sense of humor (like today), but overall you just have to laugh. They’re so innocent about it when they turn our lives upside down. I’d love to hear more about your adventures. Do you have a blog?


  6. Rhonda
    Jul 16, 2008 @ 15:41:37


    Unfortunately, I’m not that computer savvy. I don’t have a blog. I just learned about these things a few months ago. I am enjoying reading everyone else’s. It’s amazing how you can link from one to another and find so many other people with CdLS children. I can’t even remember how I found yours but I started when another blogger friend told me about Lisa Leonard and her jewelry and her son. I have marked your site as a favorite and will check back often. I can’t wait to hear more stories. It’s like a trip down memory lane. What do you do for summer fun?

    Hope the humor returns quickly!


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