Life Behind A Blue Door

26 03 2015

Several weeks ago my husband was in a little cafe for lunch and noticed a lady glancing at him. She soon approached him asking if he was Joe. He replied that he was and she proceeded to say she was a blog follower and had recognized him from the photos here. (even though he was covered in grease from head to toe!)

She also mentioned the lack of blog posts. =) And so Nancy, thanks for the nudge! I needed it!

I guess my biggest excuse for my lack of writing is that it was winter. Winter is a tough time for me. Going out requires a lot of bundling up and my muscles are much more likely to betray me in the cold weather. My energy levels are much lower and everything looks like a big job. And I just simply don’t feel as well in the winter time.

With all the viruses flying around, I wasn’t able to escape my share and so the past several months have also included several dystonic events which took a few weeks to get back to normal each time.

Another excuse is the fact that I married someone who loves to travel! I have traveled more in my short married life than I have in several years! Most of our trips have been to North Carolina where Joe spends a few weeks working at his old job when work around here gets slow. And I get to spend time with my Aunt Jan, while we take advantage of her warm hospitality.

IMG_0268 There have been weddings, which were wonderful and fun, but far more funerals than I would prefer. Saying good bye to friends is never an easy thing!

And so, excuses aside, I decided to give you a peek at what’s been happening in our corner of the world. I have been lazy and gotten far too used to taking photos with my iPad. The quality of the photos makes me frustrated and yet I still do it. =/

As you know, we did a lot of renovating to our trailer. The inside was almost totally stripped, walls and ceilings repainted, floors redone, door jams rebuilt, holes in the walls fixed, cabinets replaced with top quality, custom cabinets by my father-in-law from my dad’s shop, and the front door painted BLUE. I love my little house!

With so much to do, our house wasn’t quite ready for us to live in when we got married. We lived in my aunt’s trailer for several weeks while we got our house finished enough to live in. Our youth group pitched in, cleaning the place and getting it ready for us to move.

Alex helped too. He said our coffee table needed to be fixed, so he expertly welded it back together again. photo 2 (5) Grandma and Alex helped to find a place for everything after we had moved in. We enjoyed supper on our very own front porch one evening!

Joe is amazing. He can literally do anything. From plumbing to painting to woodworking to putting in our own heating and air unit and then washing the dishes when I’m too tired. I love him.

I love pallets! Our bed is made from pallets as is our walkway, there is no end of interesting things to do with pallets. And they’re great for a young couple on a budget! Here he is making pantry shelves out of pallet wood.

In November our church hosts an annual Ladies Banquet for the widows in our community. I was responsible for decorating the entrance, the appetizer and welcoming the ladies. With Joe’s help and that of my mom, everything came together nicely and we had an enjoyable evening. Joe even sent me home to rest when it was over and cleaned up everything on his own!

My family spent a day at the zoo for Alex’s birthday. My brother Bruce and his girlfriend, Sheila, were quite happy as they had just gotten engaged the day before. Colton proposed to my sister, Erica, a few weeks later and now our family is excited to be gaining two more members in May, just two weeks apart!

We spent our first Christmas in Mississippi with Joe’s family.

Joe and I hosted the New Year’s Eve party for our youth group. Space was limited, but they made themselves at home on the floor or wherever and we had a grand time. Complete with fireworks, compliments of my dad.

I had the opportunity to swap my kitchen sink for a white board for six fun half-days while I substituted for the first grade teacher. These two were my kindergartners last year and I enjoyed seeing how much they had learned! photo 1 (6) An ice storm took out our power for several hours and our trailer got pretty cold pretty fast! It really was beautiful out there! I wanted to go out take some real photographs, but didn’t quite dare because of the cold, so instead, I sent my cousin Andre’ and my brother Bradlyn, out to capture the beauty. They are quite good those two! I don’t have their photos to post, but here is a photo I got while holding my iPad out through a crack in our back door. photo 2 (7) And now warm weather has at last arrived! Joe came home the other day with a load of mulch and we are excited about being able to focus on the outside of our place this year!

Can She Cook for You?

20 10 2014

01_JAWed_C.Smucker-7708“How will she do her housework?” A wedding guest asked my mom after watching Joe half carry me up the aisle and then make our grand entrance into the reception as “Mr & Mrs” with my groom pushing my wheelchair.

I suppose I did seem rather helpless.

A lot of folks at the wedding, who don’t see me all the time, were shocked at my seemly very frail state.

I felt deceitful.

Just the day before I’d been walking around without even my cane. I wasn’t as frail as it seemed. It’s just that if I trigger, the muscles in my back and neck pull backward so that my balance is usually rather bad and often my back will bend backward, sometimes almost double. Most times I can handle it with just my cane but if there is a lot of walking, especially with other triggers involved, it only aggravates the situation and can push things into a seizure and so that’s when I use my wheelchair.

Dystonia does affect my every day life, but I’m not an invalid. The wheelchair usually just takes up space in our spare room and my cane is used sometimes every day, sometimes several times a week, and sometimes not at all.

My type of Dystonia doesn’t cripple you, you just have to be aware of what’s happening around you and be prepared.

I haven’t written much about living with Dystonia… I got engaged a few months after being diagnosed and since then my life has been full of learning to live with this new disease while holding down a job, wedding plans, and house renovations.

Interestingly enough, Joe gets asked lots of questions about our life.

“Does she cook for you?” they wonder. (I know he’s skinny! but does he really look that bad?)

“Can she wash your clothes and clean the house?”

Well yeah, I can!

To be honest, there are some days when I drag myself out of bed and make breakfast. Then I head back to bed, get up and make lunch and back to bed I go.

Some days Joe cooks his own breakfast and gets lunch from mom. (I have a great mom!)

But other days, I get up in the morning and go to school for my weekly devotional with the high school girls. I’ll come home after peeking in on everybody, work on a project, make lunch and do some laundry. I fix supper and by the time I’ve cleaned up, I’m exhausted & hurting, but it’s a good feeling of accomplishment.

Right now, my good days and bad days are about half and half. We’ve learned to make the most of the good days.


Weddings and Wheelchairs

20 10 2014

03_JAWED_CSmucker-193“I pray every day that things will go well at your wedding.” Read a card I received at my bridal shower.

“I’m praying for you as you prepare for your wedding,” wrote a friend in an email the week before our big day, “what are some specific things to pray about?”

“I think Miss Andrea is probably gonna trigger.” One of my little students gravely informed Rosalie the morning of the wedding as she collected them for photos. “Well you know what we can do about it?” She replied, ” We can pray for her.”

Many people were praying for me that day. They were praying that I would be healthy and that I would be able to walk. They had faith that God would answer our prayers.

So when seeing me in my wheelchair before the wedding, several dear caring people whom I love very much, were saddened. “Bless your heart!” They whispered in my ear as they leaned down to give me a hug.

“I was just praying and praying she would be doing well! But I noticed she isn’t walking very well.” My aunt said to my mom with tears in her eyes. Now bless HER heart.

So did God not answer my prayers and the prayers of the people who mean so much to me? I think He did.

I wasn’t disappointed, I was happy. Very happy!

Because you see, maybe I don’t have enough faith, but I wasn’t expecting more than that.

I have Dystonia. It’s not just going to go away for a bit so I can have a “normal” wedding, anymore than people with diabetes can ignore their disease and eat their wedding cake.

I like to think of it as realistic faith. To demand absolutely perfect health from God is saying I know better than God, and would not be allowing Him to direct my life.

Perhaps I didn’t bounce gaily into my reception on my brand new husband’s arm, but I was happily clinging to his hand as he gallantly pushed my wheelchair.

And perhaps we couldn’t use Christy’s talents to the fullest and get lots and lots of amazingly styled portraits because I was tired and running out of energy, but I have many lovely photos that tell OUR story.

We weren’t able to be a part of our wedding service, but there was something very special about watching it in a separate room with our closest friends.

I couldn’t mingle with the guests but many of them filled out the cards placed on their plates and Joe and I got to read lots of fun comments and marriage advice.

Almost every one of my “triggers” was present those last few days, with the exception of cold. But I did amazingly well.

I believe God answered my prayers because he allowed me to walk down the aisle. This was something we didn’t know if I’d be able to do until the very last minute… But God was incredibly gracious and I walked!

Now Joe thought it would be totally romantic to carry me up and the whole way back… But he understood how much it meant to me and carefully helped me, supporting my back so I wouldn’t make a scene and setting a slower pace.

When we got to the back of the church after being pronounced husband and wife, I just burst into tears. I was so overwhelmed by the goodness of God. This amazing man, to whom I had just pledged my life, and walking up the aisle, were such precious gifts from Him!

On our four month wedding anniversary, I was having seizures and muscle cramps. My body would just shake for hours. We ended up having to move home for a while so my family could help care for me.

This could have happened over our wedding. I could have been very ill and hospitalized… Instead I was enjoying my wedding, even if it was from a wheelchair.

Thank you God.

Stephanie J. Leinbach

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