And Done

August 11, 2010

And Done

It has been quite a day. We were all up before 4:30 in order to be at the hospital in time for today's full day of testing. Both of the kids were put under general anesthesia for about 3.5 hours. They had an ENT exam, ABR (hearing test), MRI, blood & urine collection and the lumbar puncture. Oliver went first and then it was Waverly's turn. They both did beautifully!! Oliver went under easily and woke up happy. Wavey went under easily and woke up fairly happy. She had some trouble with the anesthesia and was nauseous, but after they gave her some additional medication she was fine. Matt and Oliver were able to leave the hospital in the early afternoon. I stayed with Waverly and left the hospital 13 hours after we arrived...a very long day.

I will write more in the coming days about results and my thoughts on the week. I am simply exhausted and desperate to head to bed. Thanks for all of the encouraging words, thoughts and prayers.

Comments

Kelly said…

Thank you for sharing this experience with us. I think it wonderful that you took part in this study, and I hope the combined efforts lead to effective treatment.

August 13, 2010 at 10:13 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.