We've Lost Another

We've Lost Another

I just found out that yet another little girl has passed away tonight. Please keep Jasmin's family in your thoughts and prayers. I am heartbroken for them.

This is the 3rd child who has died from Sanfilippo in the past 4 days. As you can imagine, it has shaken our community.

Comments

Unknown said…

I can't even imagine how the last few days have been for the entire community. My prayers are with your immediate family and the entire community. Thank you for sharing your journey with us.

March 1, 2011 at 11:52 PM

Shannon said…

She was only 12 years old :-(

March 2, 2011 at 8:25 AM

Joanne Huff said…

Thanks for writing about all of this, Shannon, you summed up this series of events so beautifully. This has been simply a surreal moment in time, and I am numb with disbelief. The aftershocks will be felt for some time, I think, as we all are reminded of our childrens eventual fate. Sorry to post with such sadness tonight, but it's just been so very sad this week. Hugs to Waverly and Oliver, you and Matt. Love, Joanne

March 2, 2011 at 4:24 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.