Archive for January, 2007

Receptivity

Sunday, January 28th, 2007

To Lily's cousin - she is no different - the innocence of being young..... Peter is oblivious to the ways in which society sees Lily as “different”, if we could all learn to judge less….

“FC: So paired with kindness would be another face of intention, what you call receptivity. No one and no thing is rejected?
Dyer: Exactly. Whenever you have a thought that excludes or judges anyone else, you aren’t defining them. You’re defining yourself as someone who needs to judge others.
FC: But don’t we all judge one another?
Dyer: Yes, we do. But doing that less is one of those things we want to practice. Anytime I judge another harshly, I always find myself feeling worse.”

I think each and everyone one of us are guilty of judging….  But, if we all make an effort to be conscious of this - how incredible would that be???
Just a thought…

 

Posted in General | No Comments »

I just wanted to start off by thanking all of my fans!!!!

Saturday, January 27th, 2007

I just wanted to say thank you to all of my fans..... As she waves to the crowd…..  Yes, that is my sweet Lily who a few weeks ago was just hamming it up for the lens!

It has been a rough week for Lily, but she is on the road to recovery!  After developing a runny nose and cough Lily headed downhill quickly on Wednesday with major difficulty in breathing.  She was having chest retractions and stridored breathing and eventually after much consult with my awesome friend’s at T21 it was decided that we head out to the ER.  So, off we went for a not so fun-filled night of being poked and prodded and needles and breathing treatments!  Lily was not thrilled needless to say and gave each and every one of those fine doctors, nurses and techs many many of her infamous mean looks and scowls and unt uh’s!  They kept us in overnight to keep the breathing treatments going all night and to make sure she would stabilize.  Her sats dipped down to 86 a few times and when I was holding her down to get the mist from the nebulizer in to her mouth she was so MAD that her heart rate went up to 185!  Temper temper that fiery redhead of mine has, but hey can’t say I would want to be in her position either.  She sure has had her fair share of medical ordeals!  Finally, we received discharge papers at 5:30 am and after one more breathing treatment we were on our way back home to get some much needed sleep!

She is getting better each day - still getting breathing treatments and still has the cough and runny nose, but of course it has to run it’s course!  She is crabby crabby crabby today to say the least! 

We just want to thank everyone for saying prayer’s for Lily and for thinking of her and wishing her a quick recovery!  I have the best friend’s at T21 who completely understand me and my situation - sometimes that is all that is needed is to know that somebody else out there is on your page!  In a world where everyone is so quick to judge it is nice to have a safe haven where you can be free…  I also have an incredible family who means the world to me - I am so blessed!  Thank’s to all of you who have let me vent and lean on you through the many issues that I have been having lately!

It’s is all uphill from here!

 

Posted in General | 2 Comments »

Finally - my very first BLOG!!!!

Monday, January 22nd, 2007

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!

 

Posted in General | No Comments »

Welcome to Lily Marlene’s Blog!

Sunday, January 21st, 2007

Thank you for stopping by and pardon the oops you may run into while looking over our web site. It’s being upgraded by my crazy uncle! Leave a message if you’d like.

Posted in General | No Comments »