Prayers for Megan

October 04, 2011

Prayers for Megan

I just spent some time reading a little girl's Caring Bridge site. She has Sanfilippo and is in the final stage of the disease. Her little body is shutting down and she has been sent home with hospice. She is 11 years old. Please keep her and her family in your thoughts & prayers.

I am 3.5 years into my Sanfilippo journey. This news never gets any easier. I cannot help but calculate Waverly & Oliver's ages - wondering how much time they have left. I am trying to recenter myself, focusing on the here and now. Hoping for a miracle cure that can intervene and extend my time with my babies.

Comments

Anonymous said…

I love your blog posts! This one is so excited. Thanks for creating and sharing it!

Sample Assessments

October 5, 2011 at 2:44 AM

The Fischer Family said…

Prayers being sent up for Megan and her family!

October 5, 2011 at 8:39 AM

Cubanita said…

i hate sanfillipo.

praying for all the hands that help all these beautiful children.

October 5, 2011 at 12:29 PM

Welcome to Holland

By Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."But there's been a change in the flight plan. They've landed in Holland and there you must stay.The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.