Thursday, March 21, 2013

World Down Syndrome Day...Who I Am

I have to say I was ready to sit down and write all about Lydia and who she is today.  I still am going to, but I need to share something that really made me sad today.  Today there are millions who are celebrating World Down Syndrome Day to create awareness and share with the world about our special blessings.  It is important to create awareness and stand strong as a community.  As part of the PathMakers Support group that I work with, we decided to do a project for Trisomy Awareness month.  We have several kiddos who have T21 and one that has T18.  The idea was to feature these kiddos in the local newspaper on March 18 and March 21.  After submitting several articles, and making several phone calls, I never received a returned call or e-mail about our story.  March 18 came and went and Leila was not featured nor mentioned.  March 21 is here and there is no child featured in the paper who happens to have T21.  There are several good stories in there, however, there are none that talk about Trisomy Awareness.  Our project was not so successful.  To say I am mad, is a little bit of a understatement.  However, if Lydia has taught me anything it is to keep fighting.  To not let that HUGE door that has been slammed in your face discourage you.  She has taught me to keep smiling and ALWAYS take the high road.  I decided to use social medial to gain support for our kiddos and circulate our story.  There is still a lot of ground that needs to be made to create more awareness about Trisomy.  I guess when you think of it, it really could not have happened on a more perfect day.  My newsfeed on Facebook is lit up with posts about Down syndrome, and really all month it has been lit up with Trisomy awareness information.  Thanks Lydia for teaching your mom once again.  You have changed me for the better!

I can't think of anything that describes Lydia better than a picture, well I guess unless you get to meet her!  So, today I am thankful for the many lessons that she teaches me and especially the one she taught me today.  I hope you enjoy these pictures and her smiles.  Thank you for your continued support and prayers.  God knew the void that I needed filled in my heart and gave me Lydia.  She loves without fears and she is just one extra amazing girl!  I am so blessed!

Lydia sitting in her Bumbo helping mom cook!

Pictures in the summertime on the grass

Nothing gets her down...not even in the hospital

 My first picture with my girl, 18 hours after she was born!
Lydia after her very first surgery to place a G Tube, day 2 of life.

Lydia hanging in the hospital growing, waiting for her first major surgery.

Lydia eating, drinking from her cup.

Love how this girl sleeps!
 Sitting for her very first time.
 Waiting patiently to eat.
 Flashes of Hope from the hospital
 Lydia after her Gastric Transposition surgery
 Lydia and her sisters
 Turning 1 is tough work
 Showing her true colors while getting her pictures taken
Three happy sisters!
If you have not had a chance to watch the video I posted the other day, I encourage you to do so!
Also, there was a great article this morning from the Today show...wanted to post that also!


  1. What a blessing it is to get to know you and your family. I keep up with your posts on facebook and pray for you as you request. Keep up the great job of being a mommy with not only a special needs child but also your older daughters, Ellen, who I know, has so much compassion for her little sister and so much joy for Jesus

  2. What a beautiful little girl. I always say I've learned more from my 2 year old daughter than I've learned in my entire life.