Finally - my very first BLOG!!!!
After 2 years of this site being somewhat up - my brother Joe has been helping me to really get this thing going! I am completely clueless on webdesign and he has been a tremendous help! Hopefully, as the weeks go on it will just get better!!!
My name is Lisa and this site has been created for my daughter Lily Marlene! Lily was a huge surprise to me and I am so very blessed to have her! Along the pregnancy I found out that Lily would be born with an extra chromosome also known as Down syndrome or Trisomy 21. The day I found out and the days after were full of so many feelings! I grieved for her - it felt like someone had died - it was the most devastating thing I have ever been through in my life. But, the days got fewer and farther in between and mostly I grew to accept Lily for whoever she would be! I already loved her more than anything from the start - nothing could take that away from me.
I have “Our Story” posted on the front of the home page so I will not go into all that detail! But, we have come so far and Lily is just amazing!!!! She is beautiful and sweet and mean and feisty! She has attitude that can compare to none! She has been the biggest teacher I could have ever imagined in life and everyday I thank God for that beautiful little soul who chose me!
We started this site 2 years ago when Lily was in Congestive Heart Failure and had just come home from the hospital after a 2 1/2 week stay for Bronchiolitis. She came home on Oxygen and a feeding tube until her heart surgery 6 weeks later. Those days were filled with some scary times and I am happy we are where we are today!
Lily also has a brother Dustin who is 19 and living on his own - she loves him so much! But, when he does not come around enough - she gives him the cold shoulder - I love it! heehee…
Hopefully, I will get better at this blogging and my creative side will come out in full bloom again!
If anyone out there is lurking or needing any advice or has questions about Down syndrome - feel free to email me!