ISO: Mom Friend

Maybe this is crazy or pathetic or funny or a combination of all of the above, but I am looking for a friend. Specifically – a mom with a kid (s) maybe similar in age to my kid. We could go to Barnes and Noble and sip starbucks while our kids pull a hundred books […]


I will start from the Marfan Conference.  It was very nice, informative and good for us to go. I got to meet so many families that are in the same boat as we are. It’s a comfort to have people who truly understand.   Kierra participated in the free clinic, where several marfan specialists in different […]

Dear Kierra 

You’re finally asleep now, you’ve had a rough day. You have a fever and just don’t feel like yourself. So we sang to you and rocked you and finally when I said “How about we lay you down, you dream about Beauty and the Beast?” You agreed and fell right asleep. You loved that movie […]

Mommy Sad

Kierra is incredible.  I say it all the time but she really is. She sat completely still during the entire echocardiogram  (20 minutes +) she didn’t complain or try to get up. She happily watched her favorite movie, Trolls, and allowed a stranger to probe her chest, andomen and neck. Keep in mind Kierra has […]

Brace life

Mostly I wanted to update everyone on how K is doing with her brace. I think, in a word, amazing. There have been and continue to be obstacles but she is AMAZING.  I would estimate that she wears the brace anywhere from 16-20 hours per day. She has been sleeping all night in it (12 […]

Pour It Out

When you casually ask someone how they are doing, do you really want to know? I find myself wondering how someone would respond to me if I answered that question truthfully. I wonder how I would respond to someone else who answered me that questions truthfully. There are not many people in the world who […]