Time

Time

I took this photo of Waverly on Saturday at my Nana's. Wavey has been *in love* with her Wiggles guitar lately. She can still push the buttons and hear some of her favorite tunes. She got this toy when she was 2 for her birthday from a friend. She loved it and I can picture her bopping around in our living room in Bexley to the music. After she outgrew it, I held onto for Oliver. And now here we are 5.5 years later and it has become a favorite once again.

Time seems to stand still with Sanfilippo. Development plateaus and then we begin to go backwards. The kids grow older, yet their development declines. The differences are growing more startling between my life and my friends. I feel perpetually stuck in baby phase, while they are attending baseball games and dance recitals.

Comments

Joanne Huff said…

I've had that same observation over the past few years too, Shannon. As time moves along I feel further and further separated from those around me with non Sanfilippo children. I still buy chew toys while they save for college. It is very surreal and so very sad. Thinking of you guys always, Joanne

July 18, 2011 at 8:59 PM

Joanne Huff said…

I've had that same observation over the past few years too, Shannon. As time moves along I feel further and further separated from those around me with non Sanfilippo children. I still buy chew toys while they save for college. It is very surreal and so very sad. Thinking of you guys always, Joanne

July 18, 2011 at 8:59 PM

Christine said…

Praying for you. This saddens me so much. I'm so sorry, Shannon!

July 18, 2011 at 11:50 PM

Kristie Jackson said…

This is such a beautiful picture of your beautiful girl, Shannon. I am enjoying reading through your posts -- you are a gifted writer and yet I'm not at all surprised by that after our "interview" last week. You express yourself with such clarity and depth and candor -- thank you for your willingness to share your story.

July 20, 2011 at 10:41 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.