Another Loss

February 26, 2011

Another Loss

It has been a difficult day for the Sanfilippo community. We lost another beautiful little girl to this horrible disease tonight. Steffany was a fighter - so strong - and passed away with her family surrounding her. Another little girl, Sarah, has entered her final days. Please keep these families in your thoughts and prayers.

As you can imagine, this news hits our family especially hard. We are heartbroken for our friends and terrified for Waverly & Oliver's future. I am going to go give the kids an extra snuggle and kiss as they sleep tonight. Please do the same with your babies.

Comments

Erin Kathleen said…

Oh, sweetie, I'm so sorry. In addition to giving Julia some extra hugs in the morning, I'll be keeping you & Matt, and Steffany's family, and Sarah's family, in my thoughts, and prayers. For the important things in life, words most often fail. But we use them anyway. And exhausted, we lift up our tearful voices to Whomever may be listening, and ask for help, and comfort, and peace, and strength. And for more days with fewer tears. You are so loved.

February 27, 2011 at 12:18 AM

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.