Shannon's kids

I had every intention of writing a post about the fun day that we had on Friday at the zoo and bowling with my parents. I will write about that later. All I can think about right now is Shannon and her kids. I met Shannon at Taylor and recently reconnected with Shannon through the world of Facebook. Last night, before climbing into bed, I decided to check Shannon's blog. I ache for her. I cannot stop thinking about her...

Shannon and her husband Matt have two beautiful children, Waverly (age 6) and Oliver (age 3). Their children are both dying. Two years ago, not one, both both of their children were diagnosed with a horrible incurable disease called MPS IIIA/Sanfilippo's syndrome. Almost daily, Shannon sees that skills her children were once able to do are no longer within their grasp. Physically, verbally, mentally...their abilities are vanishing. I cannot read Shannon's blog without crying. I hurt so deeply for her. Last night, she wrote about crying as she stood in their bedroom while they slept. She expressed feeling like a failure as a mother because she feels like she is supposed to protect them and yet there is no protecting them from the disease that is slowly taking both of them from her.

As I have processed Zoe's death, I am keenly aware that the most traumatic part of the experience was "waiting for her to die"...from about 18 weeks gestation through the time of her death...3 days after her birth. That time of wondering...am i doing enough...can i do more...is she okay...is she hurting...when will this end...when will she die...is this all a nightmare...this can't be real...please make it stop.........but all of that was my reality. And all of this and more is Shannon's reality as she takes care of her two beautiful, once thriving, daughter and son. I think this is why I am so affected by Shannon's story. Her story is real and it is painful. She loves her children with an unending love. I want others to know of her story. Please pray for her family. Her blog can be accessed at www.familymctravels.blogspot.com.