Sunday, February 22, 2009


Today Evan is officially one month old. I never thought I would ever say that. I can not put into words how happy it makes me to be able to say that. Prior to his birth it was not something I could even fathom. We were hoping for 15 minutes. Actually, we were simply hoping we would get to see our son alive before he passed. If we made eye contact that would be fabulous.

Now, he's been with us for an entire month. We look into his eye's everyday. We have gotten to know him. His quirks. His personality. We know that he is a much more easygoing baby than our 2 and a half year old, Emma, ever was. He hardly cries....mostly when he is hungry. He doesn't fuss much at all. For the most part he likes his bath. He just lays back and almost goes limp he is so relaxed in the warm water. He LOVES to have his head massaged. Getting the opportunity to get to know these things about Evan is easily the most enjoyable thing I have ever done in my life. You truly do not appreciate things to their full extent until you realize that they can be ripped away from you in seconds. I have learned to slow down and really try to appreciate the small things. Because.....they aren't that small. The small things are really what it's all about.

This week I received a call on my cell phone while at work. It was an out of state number so I quickly answered. On the other end of the line was very sweet lady named Lee who is 70 years young. She was calling because she had seen a post I made online. She was excited to talk to me because she also has CHH (cartilage hair hypoplasia) and it's so rare that she doesn't often get the chance to speak to someone (or in this case, the parent of someone) who also has CHH. Lee said she has the same bowed femurs that Evan has. She has not had many health problems at all and was quick to point out that she has had a very long, fulfilling and happy life. She is married and has numerous children with many grandchildren. She has 4 siblings who are average height. She was the only child affected by her parents propensity to pass this on 25% of the time. We spent about 25 minutes on the phone and I'm sure we'll speak again. We were already talking about seeing eachother at the LPA (Little People of America) conference in 2010. It is being held in Nashville, TN that year.

It was great to speak with Lee for many reasons. One of the main ones was that it speaks volumes to Evans potential longevity. Billy Barty was an actor and also started the Little People of America organization back in 1957. He also had CHH and was 76 years old when he passed away from heart failure. Here is a link to his foundation ( It's great to have real world examples of Evan's potential longevity.

I never thought I'd be writing about longevity and Evan in the same message. It means the world to me to be able to do it and share it here.



  1. Great post and I'm so happy for you and your family that you are able to enjoy your little boy every day! My daughters form of dwarfism is very rare, so I too know how special it is to talk with someone who is (or parents) who are going thru the same things. Just so happy to be able to read your blog about your amazing little boy who's happy and healthy!

  2. Happy 1 month Birthday, Evan!!!!

    That is so awesome that a woman with CHH called you!! What a great testiment that Evan may very well live a long, productive life!

    See you in Nashville 2010!!!!

  3. What an amazing story! I truly enjoy reading your updates, and since our goal is to make every national conference we're looking forward to meeting you in Nashville, too! I'm glad you've already been able to contact someone with the same diagnosis - it's so easy for those of us who have achon kids since there are examples everywhere, but I remember how excited Sarah was in Detroit last summer when they found someone with Metatropic like Kaela. Glad to see you making the connections!

  4. Hey there - I know two people with CHH and can get you in touch with them. You can also check out a yahoo group, if you haven't already. There's a parents of little people group and a regular dwarfism group as well. Please feel free to contact me @