Friday, January 30, 2015


A friend saw a piece that a fellow mom of a child with PWS wrote for The Mighty.  The challenge was put out to answer this question:  If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? She challenged me to answer the same question.

It is a simple and yet, utterly complicated question. Of course the first thing that jumps into your head is the stark contrast between the shear terror of the words uttered by the geneticist and the amazing little person sitting next to you.

I would want to shout out only the wonderful moments and the unbelievable joys experienced as my Ayden Jane accomplished simple things that I feared she may not conquer.  It is an experience, an emotion, a gut-wrenching joy unlike any other.

At the same time you need to know that this journey will change you, it will change your relationships, but it's okay. The changes will show you what is important in life and teach you to think of others in a whole new light. You will learn to be dependent on God for every moment, for every breath. You will learn to place your child's present, her future, her life in God's hands.

Your family will find a new rhythm. Definitely not the one you anticipated, but one where each member finds a place and learns to use gifts they did not even know they had. Your family will grow to include many others who are on a similar journey. Your struggles will not be entirely the same but you will have a unique common thread.

You will be frustrated beyond words at times... You will at times feel isolated and lonely - not because your friends and family do not care, but because no matter how much they care, you have to cross bridges they have just never crossed. You will pour so much of your heart and soul into this little being you will at times forget who you once were.

Allow yourself time along the way to forget the words Prader-Willi Syndrome.

Raising this little being may not be the purpose you chose for your life, but it is an honor. The wonder and awe with which you will watch as she wakes each morning with a spirit of joy and tackles each day with such determination. She will show you that there really are no limits to what she can accomplish if given the time. She will teach you as much as you teach her.

In the end, you need not worry about Ayden Jane (although you often will). No matter what was said, what was predicted on that fateful day when you first heard the words Prader-Willi Syndrome, Ayden Jane wasn't listening. Even at age 7 she will choose not to hear of limitations as she will be too busy growing and thriving and learning and laughing and playing and .... being happy.

Instead, know that she will go about life doing what every other child her age will do. She will love school and swimming and soccer and riding bikes. She will develop incredible bonds with her siblings. She will show you her God given spirit of boldness and confidence daily.

You will receive many hugs, enjoy loads of belly laughter, watch with pride, and jump for joy.

So trusting in God, embrace the possible right along side your little one.


  1. I wanted to send you a private message, but I don't know how to do that...just wanted to say how much I appreciate your blog. My daughter is 6mths old and was diagnosed with PWS when she was just a week old. I'm still figuring things out and reading how you and your family are doing helps tremendously. Seeing that it's not all scary, that there is hope is getting me through this year. Thank you.

    1. This comment has been removed by the author.