Ma-Ma-Ma

December 03, 2009

Ma-Ma-Ma

Oliver has decided that he no longer wants to nap. Unfortunately, his body does not like that decision and is protesting. He became so weepy after dinner that I had to put him straight to bed. He just stood in the corner, with his lip out and whimpered. It was such a sad sight. Hopefully he will take my advice and nap tomorrow.

Wavey hasn't said mommy for a few days. She was saying "ma...ma...ma...ma" and I could see in her eyes that she was trying to get it out, but her brain just isn't allowing her to form the word anymore. I think that as quickly and mysteriously as it appeared, it may have faded away once again. I am sad to see it go. I remember crying when I realized she had stopped saying it. I was devastated to realize that I would never hear it again. And then I was given the gift of hearing it over and over again for a week. I captured it on tape and I will always be able to listen to her little voice say my name.

Comments

Laura said…

I wish I had taken your advice immediately about capturing Julie's speech on tape. At the time, she was so fluent and I thought I had many months/years to record her. After she lost so much of her speech so suddenly in April, I have realized that I don't have really anything. I was watching a ridiculous video Alex made of himself on iMovie last week and when I heard her sweet voice way in the background (in another part of the house) singing Old MacDonald my heart just stopped.

December 4, 2009 at 8:09 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.