Welcome to Our Chaos

December 07, 2009

Welcome to Our Chaos

A few entries ago I wrote about our new normal. Matt and I both feel like we have settled into life as we now know it. We have been a bit isolated the past year, but I think we finally feel ready to "enter society" again. I think hosting Wavey's birthday party was our first step. We had some friends over for bunch Sunday morning and it went really well. Even though our life feels chaotic, we are welcoming people to join our chaos.

Having 2 children with Sanfilippo is difficult, for all of the obvious reasons. I never know what to expect with Waverly and I am always anticipating with Oliver. He turns 3 in a few weeks and I have been dreading this birthday. By age 3.5 is was quite obvious that Waverly was behind her peers. I think that age has always been in the back of my head pertaining to Oli..almost like some kind of bizarre countdown. I know that Oliver's progression with the disease could be different from Waverly's, but in all likelihood it will be very similar. I hate knowing what is to come.

Comments

The Leivas said…

I'm glad that you're back to entertaining. You are a constant source of inspiration for me. I so appreciate your perspecitive and your honesty.

December 8, 2009 at 7:51 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.