Wednesday, November 30, 2011

A new twist!

Leighty's hair is getting long. It's at that point where you don't know what to do. So today we tried a tiny twist, 

 and she thought she looked AH- may-ZING! I just love her.
 Sighhhhhh... she has me totally smitten.
 and also I've been thinking about how I don't know any celebrities that have Ds babes, and I come across this in my new book.
Do you recognize this mister from scrubs?
One of the hardest things for Me to deal with as I raise this girl with Trisomy 21 is the fear.  It seems with Leighton we always have a something to worry about.
Hitting milestone, getting procedures and special shots approved, blood work test,  ultrasounds on different body parts: hips kidneys heart, lung x-rays, sedation, open heart surgery. You cross your fingers and hope/pray everything comes back "normal" on a baby that you have been told isn't "normal". You have all these "What ifs," what if she gets a blood clot, or a staph infection. What if she has pneumonia, leukemia, diabetes.  Sometimes I let these fears consume me. I sometimes go hid in my house with my little baby and shield us from all of this. I just shut the world out for a few hours and I just pretend nothing is happening. I don't know if it's healthy, but its what I do, and I feel better.
Anyway in my book he wrote about being a father of a Ds son, about how people let fear dictate their decisions in aborting the baby, but this is the part I needed this week.

"You get to trump fear by preserving glimpses of joy!  Now we will always be afraid of this, that, and the other thing. But it is almost impossible to live in fear when we are actively engaged in giving love and pursuing joy."

Who would have thought that the guy from scrubs would make my week just a little bit better. He is completely right!  I realized that's what I do.  I go home and play with her and I find joy in her.  I get to shut it out for a while. My little bug always brings me out of those terrifying fears.
   She is a beacon of light that fills my heart with warmth and calm when the darkness of fear starts to constrict my heart. She feels my heart with joy and it breaks those constricting bands that nothing else can loosen. I'm grateful everyday for my Children.


  1. Tried to do the twist to Sophie's hair today. Didn't quite work out. Will have to try again. We loved that guy on scrubs! Keep finding joy in LCD! She's just about the sweetest thing ever.

  2. Not LCD. Oops! LC. It's this dang auto correct feature.

  3. JESSE,I loved your post. Cope when things are hard anyway you can. You always needed a little quiet time and Leighton is an angel. We love you both and no matter what the future holds you have the opportunity to hold a perfect spirit in your arms. Also it says something about you. I believe it is not an accident when a perfect spirit comes to you. I believe you were chosen. You were chosen for who you are, and who you were before you entered this crazy, wonderful, but hard earth life.