A little bit about Maddi

Ahhh Maddi. She is really an angel sent to me for a little while by a Heavenly Father who must love me a lot. Why else would he send me such a perfect child. She is the most loveable kid you will ever meet. Where do I begin??? She just turned 4 on July 19, 2011. At 5 months she was diagnosed with pontocerebellar hypoplasia type 2. In a nutshell, PCH2 is a very rare genetic brain disorder. She will never meet any major developmental milestones (sitting, crawling, standing, talking or walking). It is also characterized by a movement disorder. Her little body is always moving, even in her sleep. Always an eyebrow or a pinky finger or her tongue or something. She can see and hear fine. She communicates with us by facial expressions, lip smacking and cooing. I know all parents are biased, but this girl is the sweetest kid in the world. She loves to be held, loves to be cuddled and can melt your heart at any time......except at 3am when she is crying and I can't figure out why. She is happy about 90% of the time. But when she is upset, it's unbearable for us all.  It's so hard to have a child who can't verbalize what's wrong.

Maddi loves her family. She has physical therapy every week and went to preschool last year. She LOVES riding the bus. At the end of May she got very sick and was in the ICU with pneumonia, which scared our family to death.
I am so thankful every day to be her mom. She has taught me so much about life and I will be forever grateful to her. I hope I get to keep her here with me for a very long time.

I will tell more of her story later. Stay tuned :)