Life in Holland: She Gets It

Tuesday, February 23, 2010

She Gets It

Anna's happiest moments come when she is contained in a small space, any small space.

I have often wondered what Anna thinks about her G button or if she ever even thinks about it. She does not have the words to tell me. I do not think it bothers her. She mostly leaves it alone except when it comes open she closes it. I do not know how it feels to her when it is open. I don't know if it feels weird or if she just knows it is supposed to be closed. I am happy, however, that she has the dexterity to close it. If I ask her where her button is, she will show me. During the night she will happily pull the extension set out and let tube feeds pour into the bed which does not make for a happy mama. Anyway, last night I got confirmation that she gets it. She has gotten her nasty junky cough back. She only coughs at night and I am beginning to suspect it is related to her reflux which puts us one step closer to the fundo...grrrr. Anyway, I thought I would try some cough medicine so I got her up out of bed and took her to the kitchen. I got the cough medicine and went towards her mouth with it. She promptly closed her mouth, pulled up her shirt, and opened her button. Apparently the medicine tastes bad. I laughed and was happy because I suddenly realized, she gets it.

1 comment:

KatyFebruary 24, 2010 at 1:00 AM
And how wonderful is that? That level of understanding? Of course, it's a curse too, right? When we first got Charlie off the g-tube he had trouble realizing that EVERYTHING had to go in his mouth.
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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.