ASF 2012 National Walk

I've been trying to write this post all day. I've promised myself that I will never write something that's important to me unless I really feel it. Well, this is important.

While the days pass with the current of everyday life, sometimes I do forget about Angelman syndrome a lot.  AS has become the annoying relative who is part of your life, whether you like it or not.  You can't get rid of it, so you just deal with it.  I do want to assure you I am speaking not from personal experience with an annoying relative, just a generalization :)

But I will never forget those first days which weighed so heavily on me, when I lost myself for a moment.

Oh how we've changed. Of all the beauty in the world we overlooked for so long.  And my heart is twisting in all sorts of beautiful ways just thinking about it, but mostly it is throbbing with love.

Any attempt at threading words to just how funny, how spirited, how healing Rhys’s existence is...well it seems so small and unworthy. But, I'm used to that. His sister and brother had me slayed from the start.

I can tell you this though.

I have changed. My eyes have been opened to the broad spectrum of beauty, the value of uniqueness and the amazement of the common thread that binds us all regardless of the color of our skin or the makeup of our chromosomes.

How could I not have been aware of this magic?

I’m also so grateful and excited about the generosity of people I had never met, about the magnitude of effect we all possess.  Last year Team Rhyser was a huge success and we are so thankful. 

So we're doing it again--asking for your help, setting out to raise funds for the ASF, an organization that helps make life better for anyone who possesses the magic of the missing 15^th chromosome.

Every dollar given to the Team Rhyser fund supports the ASF  whose mission is to be the national advocate for the value, acceptance and inclusion of people with Angelman syndrome.

Things are changing in our society, but it's only because people are working hard to change stereotypes, to recognize abilities and to tear down walls of discrimination.

So I come to you as a mama.

What does any mom want for her child? Hope. Hope for a successful future, happiness, the opportunity to fulfill dreams.

And when you're told your child has Angelman syndrome, for a moment, you think you have to give all that up.  But we don’t.  

Thanks to the ASF and many others that join our cause, there is hope. We want the world to know that people with Angelman syndrome are doing great things with their wild and precious lives.

I am ecstatic about the potential for what our kids will do in twenty years. The research and clinical trials are so encouraging.  What will the future hold for Rhys and his friends?

Perhaps the best spokespeople of all for these kids are their brothers and sisters.  Bodie and McCall see nothing different, nothing missing or lacking from their brother.  I want the world to see him this way too.

I don't want anyone to ever tell me that my child's dreams are limited because of a missing chromosome.

And so I'm asking you for something. For Rhys. For our family. For all these beautiful capable children and their families and thousands of others.

Whatever you can give. A whole 'lotta $5 and $10 donations went a long way last year. We can do it again.

Join with us in raising awareness and creating more opportunities for individuals, more hope for families.

Two years ago, right now? I had no idea what was in store. How could I ever had known how much joy that little man was going to bring us? I want the world to know that joy. 

Help me do it.

TEAM RHYSER