10 Comments

  1. MC

    I always worry about the etiquette of commenting on slightly older posts, but I’m catching up thanks to Conversion Diary. I really wanted to thank you for your comment about how your boys don’t bemoan the fact that they can’t walk, only other people do– I have mild cerebral palsy, and every time someone looks at me with pity for the fact that I walk slowly and with a limp, it’s a real struggle to explain to them that I’m not suffering, I’m living. Thank you for providing witness to that, and to how vital sibling support is for kids with disabilities, even as you still struggle yourself. I’ll keep you and your family in my prayers.

  2. Like the above commenter, here I am on an old post. I just “met” you and already think we should get together! We have 2 children LIVING with cystic fibrosis (out of 7) and it’s nice to meet folks who have their babies with that 1:4 chance.

  3. NJ Kim

    I, like the last commenter, have just “met” you and am catching up on old posts. I just wanted to say that my sister has a form of muscular dystrophy that often goes undiagnosed. She tires easily, and runs like an olympic-walker. I can’t think the name of it at the moment. As a kid, she went to the MDA’s summer camp every year. That is where she met her future husband, who has a form more similar to your boys’ (it could be SMA, I’m not sure. With so many different neuromuscular diseases, it’s hard for me to keep straight who’s got what) They attended college together, law school together, got married, and have a beautiful daughter. He works as a defense attorney, visiting jail and managing wins in the courtroom, all from his electronic wheelchair. She works as an attorney and a free-lance photographer. If MDA still has summer camp available, I highly recommend it – besides finding her husband, she found so many people who could relate to her struggles, and opportunities to participate without standing out. God bless MDA, and those families living with one of the neuromuscular diseases.

  4. housewifespice

    I’ve always wondered what was going on, but felt awkward asking. Thanks for sharing the facts. My husband was reading your blog recently and asked me if I knew why your two youngest are in wheelchairs. Thanks for sharing this. Both of us find your blog to be witty and smart and we love your attitude. And your Attitude, if you know what I mean.

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