You have probably noticed that Jordan’s Journey doesn’t look or feel like it did before. Here’s the scoop: our site was hacked twice. After the second time, I gave up on our hosting service and migrated Jordan’s Journey to Tumblr. In the long-run, the move to Tumblr should provide us with more opportunities to share Jordan’s story with all of you. In the short-run, it will be a headache.

• If you follow us by RSS feed, you’ll need to update your link. It has changed.
• You will notice that there are many broken links, especially to images. In time, we’ll get those fixed.
• All comments are gone. This pains me because so many of you have written encouraging and fantastic notes to us over the years. We have all of them here to read when we need inspiration, but we can’t port them to the new site at the moment. If you want to leave comments in the future, we’re enabling Disqus, which will allow you to send your cheers and thoughts like you always have. (We love those, by the way!)
• The design is an off-the-shelf theme, but we intend to make this new Tumblr home look, in the words of the slayer herself, “perfectly Jordan”

, a photo by larryvincent on Flickr.

People who know me know that I rarely refuse a good pint. This week, our family could not refuse the offer to give Jordan a pint of blood. Her counts had dipped on several fronts, so it was time to give her a boost. And boy did it ever! She has been bubbly all weekend, smiling and hanging out. She hasn’t been napping all day like last week. Instead, she’s chatty and alert. Meanwhile, I’ve been teasing her that she must be part vampire. I get the same response.
— Very funny, Dad.

Pills.

In the morning. In the afternoon. In the night.

Pills with chocolate milk, cranberry juice, mango guava cherry soda.

Oval, diamond, perfect circle,

All on a tea plate (because she deserves that dignity).

Pills to combat the defiant nerves,

Pills to soothe the coward stomach,

Pills to attack the damned cancer,

Pills to stave off the hungry seizures.

The pills render their bill on the hour.

They wait like midwives.

They struggle down the throat,

peppering bitter memories on the tongue,

and make a servant of a mighty warrior.

The pills pill her spirit, and make somber what should be buoyantly sonnant.

Songs of the pills pillowy pillories pillage my sonorous spirit.

At this holiday time of year, our whole family is grateful for all the love and support we receive. I’m often asked how it is that we’re so strong. My first response is to say that we draw all our strength from “the girl.” The truth is more complicated. Jordan guides us and gives us the energy to be optimistic and brave. But we don’t travel on this journey alone, and we would be lost without the constant kindness of people we’ve known forever and strangers we’ve only just met.

Holidays are a strange time for our family. No one knows how to behave anymore. We have fragile expectations. We roll through the festivities as easily as we can. This year has been a little harder than others. Neither Jeanette nor I have had much of the holiday spirit. There’s no particular reason. We just don’t feel it. Jordan’s new clinical trial doesn’t help. She’s doing fine, but she sleeps constantly. She is awake for only a few hours every day, and then she’s kind of out of it. It’s gotten worse since the doctors added new medication to try and bring her tremors under control. The new meds are essentially muscle relaxers. She’s very relaxed, but rarely alert. Since many of Jordan’s muscles are still recovering from surgery, the muscle relaxers are creating other problems. She falls a lot because her legs are weaker. And she has “accidents” in the middle of the night that disrupt her sleep and hurt her self-confidence.

Still, when she’s awake she’s loving and as optimistic as she always is. She had a very nice Christmas. And she’s looking forward to the new year. We all are.

She was very excited to receive a new handbag for Christmas.

She’s taken to napping on the sofa. Her favorite way is to wrap herself up in a blanket and curl up in a ball with just her hair peeking out.

We went shopping tonight and The Slayer enjoyed a night out.

Jordan: Would anyone like some of my pork chop?
Jeanette: No, thank you.
Me: Sure. I’ll have a bite.
(Jordan serves me a giant bite)
Me: Wow! That’s a big bite.
Jordan (without any irony): Well, you have a big mouth.

We chatted and hung out tonight. I have been playing with a new lens (an early Christmas present) and at one moment, I said, “Jordan, let’s take a photo.” As usual, she agreed. I love this kid. She’s fun.

[caption id=”attachment_1895” align=”alignnone” width=”500” caption=”Jordan poses with her brother and her cousins”][/caption]

 

Nothing intoxicates me more than she—she with the curly locks
and the wicked grin
and the sassy comebacks.

Nothing makes me more giddy than the flip of her fingers
dismissing air and poor logic with irreverence
and a hint of pregnant contempt.

Nothing endears me more than the intensity of her gaze—
the eyes that will not settle for less than truth;
the impatient pools of thought that are filled with abundant interest.

Nothing settles my soul more than the warmth of her hand
trusting mine to guide her and escort her and comfort her
even when it rests in a blissful sleep, just pressing close to mine.

Nothing comes close to this. Nothing.

Jordan and I ventured around our block at twilight. Our mission: take pictures of ordinary things and find life in them. She would take pictures seated in the wheelchair, and I’d stand. We’d look for the differences in our point of view. Here are the results of our photographic journey together.

[caption id=”attachment_1884” align=”alignnone” width=”500” caption=”Jordan’s is on the left, mine on the right.”][/caption]

[caption id=”attachment_1886” align=”alignnone” width=”500” caption=”Mine on the left, Jordan’s (which I think is stunning) on the right”][/caption]

[caption id=”attachment_1888” align=”alignnone” width=”500” caption=”Jordan’s on the left, mine on the right”][/caption]

[caption id=”attachment_1889” align=”alignnone” width=”500” caption=”Jordan’s on the left, mine on the right”][/caption]

[caption id=”attachment_1890” align=”alignnone” width=”500” caption=”Jordan’s on the left, mine on the right. This series is my favorite.”][/caption]