What did you do thirteen days ago? At some point during the day did you walk to your living room and sit down on the couch? For the first time in two years, so did my friend Kaitlyn.
In October 2007, Kaitlyn was sent home from school sick. At first they thought she had the flu, but she got worse rather than better, and no one knew why. Her hyper-sensitivity to sound, touch, smell, light, etc. left her to sit in a dark room all day watching tv and the lowest possible volume level. Her family read the subtitles because the tv was too quiet to hear.
In April 2008, she lost the ability to walk. That June she was finally diagnosed with Lyme Disease and multiple co-infections. Her family of five (plus two dogs) packed up their lives, left their 3,800 square foot house, and moved 800 miles to a two-bedroom apartment.
Over the last few years they have faithfully walked through a battle that I cannot fathom. The air conditioner, the act of cooking dinner, and even the gurling of the fridge are painfully loud to her. Hugs are out of the question. She's been treated almost daily at same clinic since 2008 and the doctor and nurses have never seen her face because she wears a towel over her head to block the light.
The week before the Steelers (this family's football team of choice) won the Superbowl, Kaitlyn independently walked ten steps, something medicine could not explain. That ability was lost again but the hope it provided was remarkable. She's now learning to walk again, and less than two weeks ago she got to sit in the living room for the first time since they've lived there.
This week, on September 29, Kaitlyn turns sixteen. What did you do for your sixteenth birthday? Not sit around in a dark apartment or go to a clinic with a towel over your head, right?
For her 14th birthday, their apartment was flooded with cards.
For her 15th, we were asked to fast and petition the Lord, the Great Physician, for her healing.
This year, her family has asked that we find a way to make her 16th birthday memorable.
What they want everyone to do is something sweet or uplifting. Something out of the ordinary. They suggested volunteering at a soup kitchen, making a meal for someone, visiting hospice, writing to a solider, volunteering at a dog shelter... Bless someone on her behalf. In Kaitlyn's honor and for God's glory.
I would love for you to participate with us. If you do, please comment on this post or send me an email with what was done and where it was, your state if you're within the US or your country (since I know there are some international lurkers!). What they're going to do is collect these stories and bind them into a keepsake book for Kaitlyn.
“Therefore, we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.” 2 Corinthians 4:15-18
As for what I did, well, you'll have to come back on Friday.
<>< Katie
PS: For more information, visit her caringbridge. You do have to register for the site but it's free and open to everyone.
Showing posts with label disease. Show all posts
Showing posts with label disease. Show all posts
Wednesday, September 29, 2010
Wednesday, May 19, 2010
Is this normal?
I've got a not-so-rare genetic disease. I got it from my mom. My sisters have it, too, but theirs isn't as severe.
When I was home in March, we couldn't park Maxwell (my dad's car) in the garage because there were new windows there. They couldn't put the new windows in until the wood floor on the first floor was refinished. They couldn't refinish the floor until they (a) decided on a color (b) sanded down all of the footboards in the entire house and refinished those with three coats of varnish. Yes, my mother on her hands and knees sanding the upstairs bathroom (with linoleum floor and no windows) is getting us one step closer to a refinished wood floor and replaced windows. Two months later, the windows are still in the garage. This is our disease: the inability to complete one project before moving on to the next.
My arrival home spurred a big episode...
My task: unpack the cars and fit everything into my bedroom or under the ping pong table downstairs. The living room make be borrowed but only until Laura's graduation party in late June.
Step One: clean the bedroom
This means all of the papers previously heaped neatly in the corner under the window are now sorted in piles and scattered across the room. Before finding homes for all of these "important documents" I moved on to step two.
Step Two: Operation Bookshelf
My family's notorious for trying to fit too much furniture in a single room. Right now, that room is my bedroom. It's already full with a matching bedroom set, I've added two white CD cases, and now a Dad-made bookshelf. Problem: there is no wall space for the bookshelf. I began sorting and piling next to the door to find a space for said bookshelf, thus adding to the mountains of paper sorted neatly all over the room. I also entertian the idea of rearranging every piece of furniture in my bedroom in order to accomodate said bookshelf. However, I then remember Mom and I have no upper body strength and Dad's not allowed to lift anything heavy. He's never been one for the rules, so I don't dare tempt him. Time to move on to step three.
Step Three: You have a window seat?
Well, a windowseat for the cats. It's so full of stuff animals that sometimes I'm working in my room for a solid five minutes before I realize one of my stuff animals is moving... hello, Cow (our holstein kitty whose name is really Sparkle). All of the stuff animals have been sorted into two piles: keep, donate. Donate pile moves to Mom and Dad's bedroom. Keep pile stays on my bed. Long-term they go into a plastic tub I have in the basement, but, go figure, it's on the bottom of the stack of tubs. Dad's still not allowed to lift anything heavy.
Step Four: Put photos in picture frames
You've had those picture frames for years; maybe it's time you put something in them. Go downstairs to the computer with a printer and search for the perfect photos. While you're waiting for the page to load, waste no time and blog a little bit. Make sure to read Kevin's hilarious blog about the humbling experience that was dislocating his shoulder. (Yes, Mr. "Katie, you update too much" forgot about his blog for a month... at least I'm loyal to my readers)
Step Five: Dad wants his car back
Translation: get your dorm room out of Maxwell. Freshman year, my dorm room lived in the living room all summer. Last year, it was almost a month before I unpacked my car (named Andy). We'll see what happens this year.
Step Six: Bedtime.
Oh, snap. I have a bed? And a safe fire escape for the middle of the night? Let's put these papers into a nice pile under the window, the stuff animals can live on the windowseat, and the bookshelf can chill in the middle of the room. What a successful day! :-)
Do you have this disease too? To my knowledge there is no known cure. However, books have be written about this horrible condition. They are entitled: If You Give a Moose a Muffin and If You Give a Mouse a Cookie. Check them out at your local library, don't forget to put gas in your car and pick up cheese at the grocery store on the way there.
<>< Katie
When I was home in March, we couldn't park Maxwell (my dad's car) in the garage because there were new windows there. They couldn't put the new windows in until the wood floor on the first floor was refinished. They couldn't refinish the floor until they (a) decided on a color (b) sanded down all of the footboards in the entire house and refinished those with three coats of varnish. Yes, my mother on her hands and knees sanding the upstairs bathroom (with linoleum floor and no windows) is getting us one step closer to a refinished wood floor and replaced windows. Two months later, the windows are still in the garage. This is our disease: the inability to complete one project before moving on to the next.
My arrival home spurred a big episode...
My task: unpack the cars and fit everything into my bedroom or under the ping pong table downstairs. The living room make be borrowed but only until Laura's graduation party in late June.
Step One: clean the bedroom
This means all of the papers previously heaped neatly in the corner under the window are now sorted in piles and scattered across the room. Before finding homes for all of these "important documents" I moved on to step two.
Step Two: Operation Bookshelf
My family's notorious for trying to fit too much furniture in a single room. Right now, that room is my bedroom. It's already full with a matching bedroom set, I've added two white CD cases, and now a Dad-made bookshelf. Problem: there is no wall space for the bookshelf. I began sorting and piling next to the door to find a space for said bookshelf, thus adding to the mountains of paper sorted neatly all over the room. I also entertian the idea of rearranging every piece of furniture in my bedroom in order to accomodate said bookshelf. However, I then remember Mom and I have no upper body strength and Dad's not allowed to lift anything heavy. He's never been one for the rules, so I don't dare tempt him. Time to move on to step three.
Step Three: You have a window seat?
Well, a windowseat for the cats. It's so full of stuff animals that sometimes I'm working in my room for a solid five minutes before I realize one of my stuff animals is moving... hello, Cow (our holstein kitty whose name is really Sparkle). All of the stuff animals have been sorted into two piles: keep, donate. Donate pile moves to Mom and Dad's bedroom. Keep pile stays on my bed. Long-term they go into a plastic tub I have in the basement, but, go figure, it's on the bottom of the stack of tubs. Dad's still not allowed to lift anything heavy.
Step Four: Put photos in picture frames
You've had those picture frames for years; maybe it's time you put something in them. Go downstairs to the computer with a printer and search for the perfect photos. While you're waiting for the page to load, waste no time and blog a little bit. Make sure to read Kevin's hilarious blog about the humbling experience that was dislocating his shoulder. (Yes, Mr. "Katie, you update too much" forgot about his blog for a month... at least I'm loyal to my readers)
Step Five: Dad wants his car back
Translation: get your dorm room out of Maxwell. Freshman year, my dorm room lived in the living room all summer. Last year, it was almost a month before I unpacked my car (named Andy). We'll see what happens this year.
Step Six: Bedtime.
Oh, snap. I have a bed? And a safe fire escape for the middle of the night? Let's put these papers into a nice pile under the window, the stuff animals can live on the windowseat, and the bookshelf can chill in the middle of the room. What a successful day! :-)
Do you have this disease too? To my knowledge there is no known cure. However, books have be written about this horrible condition. They are entitled: If You Give a Moose a Muffin and If You Give a Mouse a Cookie. Check them out at your local library, don't forget to put gas in your car and pick up cheese at the grocery store on the way there.
<>< Katie
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