Saturday, March 31, 2012


This is my first blog, so bear with me.  I don't know exactly what I'm doing yet.  But thought I would give it a try.  I have lots to communicate.  I'm very involved with my Granddaughter, Delainey Belle.  She has Trisomy 18, a genetic disorder where she has an extra 18th chromosome in every cell of her body.  This condition causes all kinds of birth defects.  She specifically has 2 heart defects, pulmonary hypertension and gastro/intestinal problems.  She is very slow developing.  However, she 16.5 months old now.  She is a Miracle.

More later.  Just getting started.

Susan <3


  1. Susan, thank you for stopping by my blog and leaving sweet words. It made me so happy to hear you talk about Delainey and her smile, and the chance she's been given. I know a family who was recently diagnosed at 20 weeks pregnant with Trisomy 18, and they chose to be induced and didnt even want to see the baby... it breaks my heart and I can't make sense of it. It's so special to hear how your family has embraced little Delainey, and is enjoying every moment you have with her. I am praying for you, Delainey, and the rest of her family.

    1. Thank you so much Hannah. Both our families have been wonderfully blessed by God, you with Ellie and us with Delainey. We don't know how long the Lord will give us, and it will be only by the grace and love of God (and prayers of others) that we will get through her loss. I don't understand abortion either, it breaks my heart as well. There are so many children living with Trisomy 18. And, it doesn't matter how long you have with these little ones; every moment is so precious; wouldn't trade it for anything. Thank you for prayers, mine are going up for all of you. <3

  2. Susan thank you for following Giuliana's blog! Are you on facebook? There are a few really great groups composed of mothers, fathers, grandparents etc for children with trisomy 13/18 available. If you would like more information or already on there please find me! Jill & G DelSignore

  3. Hey, I didn't know you had a blog......silly me! Maybe if I comment it will help in some way so that you can comment. Just trying.......Hugs to your day! me

  4. Hi Susan,
    Thanks for visiting me. I live in Kokomo, IN. A few hundred miles south of you. I am a little familiar with your area. My Shug and I vacation in Suttons Bay now and then. Love it. Very artsy. Hang in there with the'll get the hang of it and make lots of new friends. It's fun.

    Cindy Bee