At 19, I was diagnosed with Friedreich’s Ataxia. We’d been married for about two months and I was about that pregnant. I could walk, without help even. Stairs were more difficult and I needed a hand or, at least, a handrail. At our wedding, we stood on two steps that we then climbed to light the unity candle. I held on to Craig the whole time, just like at the football game where we’d met 2 1/2 years before.

When I was diagnosed, we’d driven to Seattle. We left in the middle of the night since we were both awake. One stop at Frankie Doodles for breakfast and we were off for a honeymoon that would just happen to have a doctor’s appointment. We arrived, rented a hotel room, checked out the space needle and went to my appointment.

We still laugh because I was a ditz at that appointment. The doctor held the flash light in front of my face, and said, “Open wide.” So I opened my eyes really wide. LOL

Well, I was diagnosed based on case history and experience, but they drew blood for the actual test that was nearing completion. Two and a half years after that, I was diagnosed by blood test. I was told to eat healthy, exercise and keep a positive attitude. That was as close to any kind of treatments we had.

So, we skip ahead six years and I begin using a walker. Holding onto walls, especially after several sudden falls and sprained ankles, just did not seem like a healthy thing to keep doing.

Three years after that, 2003, I fell in the hallway of our home. I broke both bones in my ankle. Surgery gave me two titanium plates and eight screws. I couldn’t put weight on it for over two months. The boot came off when my daughter was in the hospital, so I didn’t jump right into therapy. I started therapy a month or so into 2004.

I could walk a few feet with with my walker, but I was very, very nervous. I’d never broken a bone before and I definitely did not want to do it again. Hearing the snap, feeling the most intense nausea. Ugh Plus, with FA, I had sat for so long in a wheelchair where balance doesn’t matter, with the feeling of safety that came with it, that I felt dizzy when I stood up.

I still do at times, like my brain is blue water and my skull is one of those clear rectangles that move like a seesaw. Makes standing, especially with holding on to movable objects, a strange thing. A curious mix of strength, weakness, fear and determination.

These pics aren’t my legs, but here is what we are trying to do. I locked my knees for so long when I walked that I’ve done some damage. Now we are trying to fix it from the first pic to the second.

I began pool therapy last fall. I had a lot of strength to gain. My therapist has been amazing. Recently, I have begun land therapy. Walking with my knee cage and with parallel bars. It feels good. And suddenly 5′ 1/2″ feels really tall. LOL I wish I knew what happened to our digital camera. I could take small video clips of it.

I just wanted to log my progress a bit. Have any of you fought a journey like this?

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I love all those stories! The picnic, Bruce Springsteen concert, kissing all those troopers! LOL Had to be fun. Yesterday, Craig made waffles for breakfast and chicken fajitas for dinner. Yum. In between, we visited a few antiques stores that we’d always wanted to look around in. Several were more junk or just old junk with a few cool items. However, the one that was our favorite, was full of old furniture.

Bed sets with headboard and footboard and dressers. Vanities with large mirrors. Gentleman’s drawer sets with two low drawers, a long mirror and a hat box. But I fell in love with the steamer trunks and hope chests. I cracked him up because if it was a box, I had to open it. Same with drawers. lol

But they had the most gorgeous old fashioned writing tables that flipped closed at an angle and opened to reveal sectional pieces and small drawers. One of the tables had a glassed in bookcase for a back drop and when the lid started to open, to long pieces of wood would slide out to support the table part and slide back when the lid closed. Gorgeous.

Then there was this Chinese apothecary chest. About 3 feet tall and 3 feet wide and one foot thick, it had around a hundred small drawers. There were 2 slots per drawer and on the outside it each drawer was marked with Chinese symbols. If we’d had Craig’s cell phone, we definitely would have taken pics.

Then there were the books. We fell in love. Unfortunately, they were mixed in with obviously new ones, like some of Dr. Phil’s, but there was a 1915 printing of Return to Tarzan by Zane Grey. Two of those and one in really good shape. Little kids beginning reading primers. Cloth-bound hardbacks with no copyright date in them. Longfellow, the Song of Hiawatha and many more.

There was a 1939 yearbook from close to Spokane with letters and an invitation to the 50th reunion inside. The outside binding was made of metal and it would have been so wonderful If I was writing a historical set in that time period. And there was this pretty lavender, decorated book called Princess.

I love that store. And I found out how fascinated by older books Craig is. Trust me, his love of books is a big change and definite growth since high school. It was awesome knowing we could share it. Too bad my wheelchair wouldn’t get me into the old bookstore around the corner. Too many steps.

But I think we need to learn a lot about old books before we start collecting any. Like, what does it mean if it doesn’t have a copyright? What if there is a leathery paper binding? Lots to learn. lol

What is your favorite hobby?

Also, chosen by number of years married, the 3 winners of a free copy of Betrayed are:

Alexis Morgan - 34 years

Vicky Burkholder - 35 years

Katherine Allred - 41 years

All of you ladies are an absolute inspiration. So are you, Ann Roth. Over 20 is huge.

Ladies, please contact me at: JLH@JamieLeighHansen.com for your prizes.

Thank you all for celebrating our anniversary with us.

I can’t wait to spend the day with you tomorrow.

I love our wedding anniversary. It’s so funny, though. Everyone was worried it would rain too much for our outdoor reception and the whole day ended up smokin’ hot. I had a beautiful Cinderella dress with a high collar and lots of hand crocheted appliqueing. My mother did the most beautiful job. It was hot though. I want to add pics but that will have to wait until my scanner works.

This year might be the rain, though. lol I’ve written a lot about how we met, started dating and got married in the archives. But to recap, we were 19, had dated two and a half years and didn’t know it, but were to have our Miracle Child by the end of the year.

Does anyone have a fascinating anniversary or wedding story to share? Answer in the comments and in the spirit of the holiday I will give away 3 copies of Betrayed!

Have a great day tomorrow!

Jamie

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A book of poems about life, love, loss and cancer written by 13 year old childhood cancer survivor Thalon Marie-Leigh Hansen has just been sent to print at Lulu.com. Thalon is donating the first, hardbound copy to the annual Candlelighters’ dinner party this year, on April 25th.

For anyone who does not know about Candlelighters, I’ve blogged about them before and they can be found in the Cancer category in my blog archives. They are an organization designed to aid families through as many of the trials and tribulations of dealing with childhood cancer as possible. They provide snack baskets at the clinic for the children to eat when they’re at the hospital all day. $300 provides a snack basket for a month.

They also provide $25 gas cards, an invaluable tool with today’s gas prices. When Thalon was in treatment, we drove everywhere five days a week. We live in the middle of town and we drove to all the extremes for the different therapies, pool, physical, occupational, chemo, speech, etc. Insurance required only 1 therapy a day so the five days a week is no exaggeration. Gas was a nightmare.

Candlelighters also supports the Ronald McDonald house and Family Room in the Children’s Hospital. They provide food to families suddenly moved in for a week or more. Laundry services. Beds to sleep in. Comfortable areas to sit and try to feel at home.

I can’t say enough how proud I am of my kid. She’s done such a great job. Put her heart and soul into these poems.

www.candlelightersinlandnw.org

It just sneaks up from no where some times. Everything is going well and life is productive, then suddenly a day comes when there’s not much more than basic living that I can manage. Frustrating and disappointing when it impacts goals and plans, but it is what it is.