Here is something I posted to the FOD support group on October 8, 2008:

"I am new to this whole FOD experience and this has been my experience with questions (this is me venting also :~) ). My baby is almost 3 months old. I find it awkward when people I meet ask about how well she sleeps or if I am breastfeeding or bottle feeding. I'm still trying to figure out the best way to respond. How much information should I disclose? It feels like when people ask "How are you?" and if things aren't going well they really don't want to know. I have found saying, "She is a good sleeper." is the easiest and it is true. For the feeding question we just say we are breastfeeding and bottle feeding. If people probe more then I try to explain, what I understand, about Sarah's FOD.

I get the "Will she grow out of this?" question a lot. Also, they comment that she looks so normal or healthy that they can't imagine anything could be wrong with her. I have had two people respond to her like she was mentally disabled or that she would act abnormal because of their misunderstanding of her genetic disorder. In both cases I tried to respond with grace and did not make a big deal out of their treatment. Although as Sarah gets older, if similar situations happen, I will need to correct their misconception.

I am trying to treat her like a "normal" baby. My doctor even said she is a "normal" baby. This gets confusing for me though because she really isn't "normal" because we must have her on a low fat diet, give her carnitine, and make sure she doesn't sleep for more than 5 hours. The doctor says that when she is ill or not eating is when we need to worry. So far, she has seemed like a normal baby to me. How will I know if something is going wrong with her muscles or heart? How much information do I need to disclose if I am leaving her (already well feed) for an hour and a half in the nursery at church?

When my husband and I got married many people commented that we would have beautiful babies because we had such great genes. I find it ironic now, considering how rare this disorder is, that it just so happens my husband and I must be carriers. She is a beautiful baby though. :~)

Lisa
mother of Sarah, presumptive CPT II"

I didn't post these pictures on the FOD site but I'd like to show off how cute my kid is. :~)

The last picture was taken by the fabulous photographer Becky Fisher - http://www.beckyfisherphotography.com/Home.html