Wednesday, September 14, 2011


It was 2 years ago today....

Exactly two years ago today my beautiful angel was diagnosed with PRADER-WILLI SYNDROME. It was early in the morning and I was playing in the driveway with Blaise. I remember I was wearing my pink bathrobe and I looked a mess. I hadn't slept in days awaiting the very phone call that would change my life forever. When that call came in and they said, "Rachel, can you hold Wendy is on the phone with another doctor, don't hang up ok?" I knew right then. That was the longest minute of my life, I felt my whole life pass before me. When the words came through the phone I just collapsed right there. I let out a scream that I am sure the whole neighborhood thought was a cat dying.

I spent the next two days crying uncontrollably, sobbing for the loss of what could have been. I was so terrified about what the future held for my son, what his world would look like, who he would become?

Then I realized I had to get it together so I reached out. I was lucky to know two people who had relatives with PWS and we got in touch immediately. It was at that moment that I began to feel hopeful not hopeless.

Fast Forward 2 Years....

Never in my wildest dreams could I have imagined that I celebrate my sons diagnosis. Yes, it is true I am celebrating. Why, because since September 14th, 2009 my sons life really begin. We were finally able to unleash all the potential he had locked inside of him.

When you first receive a diagnosis of PWS it feels like a death sentence. Yes, we still have challenges, and yes, Blaise still struggles everyday, but he is happy. I mean he is really happy. What more could I want for him.

What is life like for Blaise now, well I will tell you. It is amazing, the world is his oyster. He plays the drums, does karate, goes to school, and has many friends he loves dearly. Like any other four-year old he is learning to read and write, he goes to school and rides the bus. His life has truly become all that I hoped for him.

Here is the secret to his happiness, he doesn't know that he is different, and even if he did he wouldn't care. He is strong and confident, his smile can light up a room. He is funny and honest and above all he has the ability to show all those around him love. We could all learn a lot from Blaise. He never judges or discriminates, to him everybody is a worthy human. He truly is a gift.

Two years ago somebody said to me aren't you grateful for the diagnosis. I wanted to kill that person, literally.

But, now I get it, I really do. Thank you!

I am grateful, I am grateful for Blaise, and all that comes with him. He truly is a gift.

I love you Blaise!


  1. I am glad to hear Blaise is doing so well Rachel.

  2. Rachel that is beautiful!! So true!!

  3. Made me cry. Love you guys, so proud xoxo

  4. I am so proud of you too. I also was brought to my knees that fateful day and you have shown me what a beautiful life Blaise can have. I love you both always. Mom-mom.

  5. Rachel, thank you for sharing so much positivity!! I'm so happy for you, Blaise and your family. I have no doubt Blaise will always be your gift and achieve all of the hops and dreams you initially had for him and more.

  6. I think your feelings are almost identical to mine, but you put it into words so eloquently. What at first seems like the worst day of your life, you realize may be one of the best. Salute to you for being such a great Mommy Warrior! Hugs, Jill

  7. beautifully written, rachel, you are an amazing woman and blaise is so lucky to have you for his mom. thank you for coming up north so we could all meet the little man. he is a special and beautiful little boy.

  8. Rach - You're one heck of a mom and a terrific writer!


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