Thursday, May 8, 2008

More Hard Memories (Dad, skip this one!)

More hard memories. You can call them flashbacks, I suppose.

Last night, as I was going to sleep, I was recalling Andrea and Mike's wedding, on August 2nd, two weeks to the day before Katie passed away. Katie had known that she was going to die for about 2 weeks, at that point (but no one knew when it would happen). She needed a lot of pain medicine to be comfortable, but she could still walk a bit. She stayed in her room upstairs most of the time, but on this day, she had to come down, get in the car, ride out to Chuck and Cheri's house (about a 20 minute drive), go upstairs there, change clothes, come downstairs, walk in the wedding procession, go back upstairs to rest (her choice), go back down the stairs, go home in the car, and go back upstairs to her room.
During the course of those activities, I believe that we gave her 6 extra doses of morphine to keep her comfortable, over and above the scheduled anti-inflammatory, anti-nerve-pain and other drugs that she needed around the clock.
But she got to be the MAID OF HONOR that day, which was one of her life's dreams.
She got to wear the gorgeous brown, matte-satin, strapless dress with the ribbon sash, the beautiful brown satin sandals from Zappos, and makeup.
She got to walk down the aisle with her handsome cousin, Joey,
and hold Andrea's bouquet during the ceremony.
Katie posed for hundreds of photographs, which are now treasures to us. It was really a magical day.

But I was recalling the day a week later, when she tried to get out of bed, and her legs buckled under her. I was in her room with her, waiting to help her when she got up, really just waiting for her to decide when she was ready. For a moment, I looked away, which I think is what she wanted; she wanted her independence, but she needed help. She tried to stand by herself, and as she put her weight on her legs, she fell right to the floor.
It was horrible. She was in pain from the fall, and I felt terrible, negligent, awful. I wasn't neglecting her, but any pain that she experienced felt like a failure to protect her on my part. It was one of my fiercest desires: NO MORE PAIN for her. She was on pain medicine around the clock, but as the disease progressed, she needed more medicine to do anything other than lie down. And then, suddenly, she couldn't use her legs anymore. It happened just like that.

It was heart-breaking to watch her try to move her legs with her hands, to position them as she wanted them. I wanted to help, to do it all for her, to take the pain and frustration away, but she was a "tween" who wanted to do things for herself. She didn't want to be babied. She wanted freedom and control, as we all do. So I had to walk a fine line between being ready to help, and letting her try (and even letting her see what she couldn't do). But the day she fell to the floor as I waited to help her get up was a really bad day, and it is a bad memory.

After losing the use of her legs, I thought that she became quite disgusted with the way she was living. She only lived one week after that. We felt that she had sort of "had it" with the way the cancer was causing her life circumstances to dwindle. She was still able to watch TV, movies, visit with people, etc., but was very sleepy and pretty snappy with her dark humor then. She really didn't want to see most anyone outside of the three of us, with very few exceptions.

I have to say, though, that she did & said some of the funniest things, ever, at that time. When Katie couldn't get around on her own anymore, we bought a portable intercom, so that we could hear her voice anywhere, and listen for her in the night, while still giving her a measure of privacy and autonomy in the sanctuary of her room. One evening, Andrea and Mike were over visiting us; Mike was with Katie in her room, and Andrea was with us in the kitchen. Katie decided that she wanted a cool washcloth for her forehead; Mike offered to go and get it for her. She said to him, "No; you're a guest. Watch this," she told Mike, and then yelled into the intercom, "MOM!" I came sprinting up the stairs, and she told me her request. I went to get the cool washcloth for her. Mike said that she was very pleased with herself. We have laughed about that many times: Watch this! Watch me make her dance on the head of a pin!, as Maribeth put it. The simple pleasures of "tween" life, when there are so few pleasures left.

Just look at her expression in this photo, as we arrive at Chuck and Cheri's house for the wedding. I can tell she is probably telling me to stop offering to help her carry her things.

What a gal.

8 comments:

Sheri said...

I love the pictures and I love the stories. I wonder what she and Joseph would have thought of one another? They were so very different and yet would have been so bonded by this cancer monster.

I too have a very distinct memory of when suddenly Joseph lost the use of his legs. Your memories of Katie brings it all back. Its a horrific memory to be sure. At the same time...we were together. We shared that awful moment just the two of us, in all its raw, horrifying, vulnerable intimacy. A 13 year old boy who could no longer stand on his own. The wrongness of it is still overwhelming and I feel the same feelings as I read about your similar experience with Katie.

I found as I approached the one year anniversary of Joseph's death these vivid memories came more frequently. My heart is with you and I (and so many others) are here to bear witness to the love, the grief, the sorrow, the joys, the loss.

Smileygirl said...

Your are an AMAZING mother. I'm in awe of you and your incredible family and I'm so sorry for all those horrible times. Somehow you got through them. I am going to be thinking of you a lot this weekend and sending prayers of comfort and peace.

And I have to ask, is that beer in the picture of Katie all smily and giggly? What an awesome photo of her. She looks so happy (yet deviant) in that picture. Her personality really shines through. It's so obvious in the photos how happy you all made her even during those difficult times.

karengberger said...

smiley girl,
Yes, it's a beer! She didn't like the smell of beer, but someone handed her one at the wedding, so she did her thing and posed. She wanted to be a model for a while. You can totally see her spunk and spice! I love her sass!
I don't know if you can click on the photos and enlarge them on your "blob," but if you can, you will see that she is really enjoying herself. It is still hard to believe that she passed away 2 WEEKS TO THE DAY after those photos were taken. She looked so healthy and beautiful. I thank God for Andrea and Mike, for giving her that wish-come-true, and for how the whole thing came together. A blessing.

Sheri, thank you for sharing that memory with me. I would have loved for them to meet...

Anonymous said...

Hello, Karen,
I was introduced to this page by my friend at work who knows you from Seattle.
I lost my son to leukemia, and I find your words amazing. Thank you for sharing these so willingly.
Terri in Santa Fe

Smileygirl said...

I just enlarged the photos. Everything about her is just gorgeous. Such long slender limbs and fingers. A perfect 10 inside and out.

And the pic where she's carrying all the stuff definitely shows some sass as well.

I love seeing her photos. Each time you post one it shows another little glimpse into her remarkable life.

Thank you for sharing.

karengberger said...

Smiley girl, I'm so glad you could enlarge the photos on your Bluebird! (I just love your mom stories.)

Smileygirl said...

Perhaps David has a few stories to share on you!

Patty said...

karen
i seem to relive kelly's last days at night when i am trying to go to sleep. she also was on a lot of morphine. she was still able to walk with help. so many hard memories yet precious because they were the last moments with her for awhile.
a friend emailed me after Kelly's passing - "I am so sorry you must endure this separation from your daughter" and that is an incredible comfort to me - to say that over and over in my head. this is just a separation, just a separation. we will be together with our Lord and Savior forever.
your blog is so wonderful Karen, thanks for taking the time to post. hope it is great therapy for you and blesses you as it does me and so many others.
love in Christ
patty