I’m not an excessively superstitious person. I don’t walk under ladders because they’d likely fall on me. I love black cats and have two. They have a lot of white on them, but they were free, so hey. That works. But, in 2002, right before the end of the year, I read a comment that stuck with me. At first, it wasn’t a prediction or a superstition. It just seemed like good sense. A good way to set your mind for the new year, kind of like making New Year’s resolutions.

The comment was: How you spend the first day of the year is a sign of how the year will go.

It’s not a superstition yet, but it’s becoming something it would be ridiculous to ignore. You see, coming up to New Year’s Eve 2002, our brother was in the Coast Guard in Seattle. He’d been in Spokane with family for the holidays. On his way home, he realized he’d forgotten his cover. You know, the military hat, and he needed to report for duty with it. So, being a loyal brother and sis in law, Craig and I drove overnight from Spokane to Seattle to bring it to him. I thought it began 2003 with a road trip. Excessively awesome.

Instead, my husband missed work and we were in a state of emergency. So, Craig got sick, missed about 7 months of work and had surgery in July, resulting in a week in the hospital. A month later, he returned to work. As he was gone, I fell and broke my leg. I went from a walker to a wheelchair and spent a week in the hospital as we tried to figure out how I’d be able to function for 3 months with no balance due to FA and being unable to put any weight on my right leg. A few weeks later, as I was teaching my daughter how to crochet a chain stitch, her left arm began shaking. Within 3 months, we got an MRI with sedation, our daughter was diagnosed with a cancerous brain tumor and we spent a month in the hospital.

2003 in a state of emergency and months of missed work.

We rang in 2004 at the hospital with our nine year old in her new pink, silky pajamas looking out the window at the best view of the Spokane fireworks ever. From her arm trailed the tubes full of her first chemo treatment. Every Friday, all day long, and for several entire weeks, that was our 2004.

For 2005, the phrase rang in my head over and over. How you spend the first day of the year is a sign of how the year will go. We stayed home. We watched TV and we hibernated and I wrote. That year, I finished a second full version of Betrayed. Everything else is revisions. And I signed with the most amazing agent ever. We finished chemo and revised Betrayed and the year turned out very productive and fulfilling.

For 2006, I had to get ready for jury duty beginning Jan. 3. I spent one day in court, waiting, and a week making all the necessary phone calls to check in. The legal aspect of this last year, coupled with endless, relentless drama, did nothing short of suck. The rest was a pretty good year.

Now we are on the eve of 2007. 7 is my favorite number ever. I have a lot of high hopes for the year. We plan to spend the first day with friends. Tonight may be with family, or it may be resting at home. You can never quite guess what that will mean for the rest of the year. All I know is this:

Protect the first few days of the year with all you’ve got. No sickness, no emergency, no hospitals, no missed work. Whether it’s mentally motivating or a curse of some sort, I’m finding it a piece of advice that’s foolish to ignore.

How you spend the first day, or few days, of the year is a sign of how the year will go.

I hope you all have the greatest day possible with hours full of the things you most need in life.

Today was my daughter’s 4^th MRI this year. Over the last 3 years, she’s had at least one every 3 months. So, she’s had a little more than 12 of them. Since her very first aborted attempt at one, when she was only 8, she’s been terrified of the machine. The sounds scared her. She’s needed to be sedated for every MRI since. However, since she is getting older and there is a risk, however minimal, with sedation (Which is why it can only be done within the presence of an anesthesiologist.) we’ve had to find a way to help her do it without. So we found a counselor to help her work through her fear, but it’s only been less than two months.

We went in today prepared to do another sedation. Instead, her doctors wanted to try Versed, anti-anxiety happy medicine, and have sedatives as a back-up. The nurse tricked her, making her think she’d given Versed, but she wanted to wait. See if she could do it on her own.

So, my dh and I watched our daughter walk into that hallway where the MRI room was. Usually she is wheeled. The door has always needed to be closed before. The sounds would send her into a panic. We’ve kept it open most of this year, but she’s always had to be knocked out in the hallway. It wasn’t even until this year that she was knocked out on the gurney that goes into the MRI room. It’s always been the bed before. But today…today she walked through the hallway and up to the open the door.

She froze on the line that separated the room from the hallway and stood there for the longest time. By herself. She’d already told my dh and I that she wanted us there today but not to say anything as she worked through her own fears of different things from getting an IV to going to the radiology holding room. We stood back and let her do it, watching her take deep breaths and build herself up.

Then she passed over the line, walked up to the gurney that slides up to the MRI, and sat on it. She was crying, but there was no arguing, no fighting, no last minute panic attacks. They hooked up her oxygen monitor, dried her eyes and got the heated blankets ready. She was stiff and crying as they laid her down and covered her up, but she did it. They rolled her into the machine with the door open so we could watch. It seems like such a tiny hole, but it swallowed half her body and she didn’t panic or scream.

They shut the door and the machine, that’s noisy even when it’s sitting, started making the horrible knocking sound. We waited, listening for a scream that never came. After a minute or two, we left for the waiting room. She did the entire 40 minute test with one nurse holding her hand and writing a poem on Thalon’s heated blanket. Later she copied it onto paper and I think we’ll frame it.

It won’t always go so well, but today my little girl conquered one of her biggest fears and came out smiling. That’s something worth sharing, so I’m doing so—with everyone.

Merry Christmas!

We still have a few weeks to acquire the beautiful gold ribbon pins and pendants. Or a precious car magnet with the Candlelighter’s spokeschild on it. All proceeds go to research or helping families with the many different aspects of cancer. Whether you take this time to donate to the:

American Cancer Society to help with all the many things they do, like sponsoring an annual camp for cancer kids where they can have fun while safely monitored by doctors and nurses

or to the:

Candlelighters Childhood Cancer Foundation who helps so many families in all aspects, from befriending and lending a hand when your child is suddenly diagnosed, to helping with transportation issues. There are many local groups of Candlelighters. It’s not hard to find one near you so you can help the children in your community.

: your time and effort is much appreciated.

Have a good weekend.

Jamie

We happened on this song by pure chance one day as we were driving my oldest daughter home. It turned out the only station on the radio that came through that day was a country station. Usually, we listen to Aternative and Classic Rock, but we occasionally enjoy country. God must’ve been paying attention.

In the midst of 1 1/2 years of chemo hell for our youngest daughter, we were driving along, totally unsuspecting of how hard we were about to sob. Both my husband and I. I don’t know if our oldest heard the song, but we were grateful the youngest wasn’t in the car.

We tried to forget it after that, but one of the lyrics stayed with me and every time I mentioned the song to someone, I didn’t know all of it, who sang it or anything. Well, tonight, I asked my dh to find the lyrics to Streets of Heaven. I should have warned him it was *that* song.

See, November 29, 2003, my husband and I took our daughter to the local hospital to find out why her left arm was shaking so terribly. We’d finally gotten an MRI scheduled where she could be sedated. The first time, we’d mistakenly thought she could handle the loud machine. Now we know better.

But on that winter day, the day after Thanksgiving, at 5 in the morning, we woke, dressed and made it to the hospital. My husband was thinking he’d be late to work, depending how long the test took. I was thinking about how it was the day after Thanksgiving–meaning the day we set up for Christmas and decorate our tree with 1800 lights so we could enjoy the way it glowed for an entire month, mellowing our mood, refreshing our spirits and preparing for the next year. Our Tree of Giving, where we love to pile presents to spoil everyone we know and love.

We were trying hard not to think of how her left arm was shaking, her fingers wouldn’t move well and her left leg was dragging. We were trying to ignore the worry that had built for 3 months as we waited weeks for doctors appts. and scheduled tests watching her shake and limp grow more pronounced and hearing doctors’ calming platitudes that weren’t making us feel better.

We tried not to think that morning, so we wouldn’t break from the strain we’d been under all year. We weren’t thinking about the fact Craig was sick for 6 months, until his surgery in July of 2003. Of the financial stress we’d endured as he missed work most of those months. Or of how I’d fallen and broken my ankle on the day he returned to work. Of how I’d become confined to a wheelchair for 3 months and had just gotten permission to put weight on my still-booted right ankle.

We soothed our eight-year-old baby, trying to help her ignore her hunger and thirst and be brave as the pediatric nurse put numbing cream on her arm. (And do you know medical insurances do not consider numbing cream a *necessary* ointment for children dealing with weekly, if not daily, pokes?)

But that day we didn’t know anything. It was all new and horrible and terrifying and soul wrenching. I saw my precious child with cream and a clear plastic seal on the inside of her elbow. She was afraid, no matter how we tried to distract her with toys, TV, stories, playing. She’s not stupid. She knew something was up.

Somehow, we got her through the installation of her first IV. Then the sedation. Watching her fall suddenly, eerily to sleep. Her tiny body limp as her dad lifted her from the gurney in the hallway (she’s still too terrified to stand in the hallway with the MRI door open, even if it’s not her day for a test) and carried her into the MRI room. There he laid her on the bed that goes into the MRI machine, and we watched as all the tubes and monitoring machines were attached to her sleeping body.

I couldn’t go in. Still can’t, not even to hold her toes as she sleeps. See, I’ve done several MRIs in my life, part of living with Friedreich’s Ataxia. I could’ve handled being in that room as long as I was needed. But my ankle had broken, in both bones, so severely, I’d had two plates and 8 screws installed to hold it together. With that much metal, I’d destroy me and the machine. So I watched from the doorway as my husband, who already hated hospitals so incredibly much, held her toes until the tubes and monitors were set.

Then we sat in the waiting room for 45 minutes. Me with my cross-stitch and him with a book, and the TV on some talk show we tried to ignore as he thought about work and schedules and trying to make up for 6 months and I tried to keep my hands busy and my head working on how I wanted the house decorated for Christmas. We’d already missed decorating for Halloween and Thanksgiving. The year had sucked enough. I wanted some holiday cheer.

The clock ticked slowly by. One of those clocks that shows the seconds going by until even so little as a second seemed an eternity. Finally they called us back, warned us the sedation med would cause her to wake up grumpy and said within 20 minutes or so, she’d be awake. So we stood by her bedside, Craig brushing her hair away from her face and me reaching from my wheelchair for the only thing I could grab, her toes.

Twenty minutes, then we could leave. We could take her home and set up for Christmas and Craig could work and then we’d enjoy our weekend. Maybe do some shopping and present wrapping. And maybe get an answer about her shaking that wasn’t too bad. Something easily cured. Please, God.

But it didn’t happen that way.

A minute, maybe two, after we’d been left to wait, some guy walked up, flipping pages on his clipboard and said, “So, I guess you heard. We found something.”

If you consider a tumor the size of an egg in the middle of the right side of my baby’s brain ’something’.

We didn’t go home that day. Or that weekend. Or, actually, most of the next month. Instead, we were admitted as one of the first few families in the new Oncology ward of the brand spankin’ new Sacred Heart Children’s Hospital.   Room 304.

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