Monday, April 7, 2008

The bad and the good

I am really glad that I didn't write on Friday. If I had I would not have had the 'and the good' part in my title. I was reading about a woman on the list serve (noted in sites I recommend on this page) and she was overwhelmed by emotion trying to deal with . . .this new way of 'life.' So I am not alone. But some days I feel so overwhelmed that I cannot take a deep breath, my shoulders feel like someone is pushing down on them, and I cry. Poor Robin. One second I am talking about something I read about, next second I am trying to breathe. An hour later in school, poor Lauren and Patty. After that no tears, just heaviness.

I know how lucky we are that things aren't worse. I know I am strong enough to be and do whatever Kath needs. I know Rog and I will make sure Kath will get what she needs -with help. But some days I just feel so sad that this journey is one Kath even needs to take. I never did drugs. I don't drink, smoke, or do anything dangerous--ask my boys-I am boring. Yet this happened and my beautiful Katharina will have to work so hard for the rest of her life just to do normal stuff.

She seems to have stopped saying 'mama.' Not sure why. Will ask Liz (speech therapist) tomorrow. Today Sue said Kath needs to stop knee bouncing to get places because she is loosening up her hip joints and that can cause other issues. My mother used to say, "stop taking your temperature every day" . . .little did she know, I would HAVE to do that for Kath to keep her on track.

This story/poem is one that my friend Donna told me about and I wanted to share it here.

"Welcome to Holland"
By Emily Perl Kingsley, 1987. All rights reserved.

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.

I love this story/poem because I feel like it is okay-at least with others who go through this, to mourn what I thought I was going to have for Kath and for my family. I feel like it is okay for me to feel sad sometimes as long as I don't forget how wonderful my Holland is too.

That brings me to 'and the good.' There is such great joy in each accomplishment. She took a step! I thought for a second it might have been a falter, but when she plopped down, she took a second and then started to clap for herself. She was quite pleased. There have been no reenactments. I was the only one who saw it so according to Roger's mantra-It only happens if we BOTH see it--it didn't really occur. But . . . . :-) She is a very happy camper who absolutely adores her siblings--Chris was home this weekend and she loved having him around-if just to have one more body to practice her climbing on.

Well, more later. It is late and I still need to read for my classes tomorrow and well, this is long enough anyway!


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