Translations

Last weekend H played in an all day tournament in Bowling Green. This was the first time we took the wheelchair out of our very familiar territory. I probably should have seen it coming, but I was a little unprepared for the comments etc that this little contraption brought. As soon as I lifted it out of the van, heads began to turn. We saw and heard lots of things so here is what was actually said, and my rough translation.

As B and I walked in, a coach from another team offered L candy. Translation: I can't believe I just yelled at my perfectly healthy child for missing a ball when this small tyke can't even walk. At least this small token makes me feel better. (Of course B wondered what kind of weirdo this was and wanted to make sure the package was wrapped and had not been tampered with. Actually this happened several times)

How old is she? Translation: What's wrong with her?

What a pretty girl. Translation: I realize that I have been staring at you. Obviously the deformed ear, the extreme stiffness, the chunks of missing hair and unfocused eyes mean something is wrong but hopefully this will excuse my rudeness.

Me-"If you want to go on to that field, push yourself." Imagine the vicious stares. Translation: How can you talk like that to this poor invalid child.

I personally find children much easier to deal with. They say "What's wrong with her?" Translation: I really want to be informed- what's wrong with her. Then I can answer his or her question without any pretenses. Children also accept the answers and go on in a way adults can't seem to do.

The amazing thing about wheelchairs or challenges like CP or Down's syndrome or anything else is that how you see them is nothing but perspective. The man who says "Look at that poor little thing." as we walk by doesn't realize that quite the contrary, this wheel chair empowers her and gives L control she could never otherwise have. The fact that I can fuss at her to move herself is a statement on how far she has come. No one would have looked at me funny for making H carry her own bag or J walk on his own feet. One of the things I love most about our trips to Vandy for therapy are the others in the waiting room. All of these children have unique special needs. As L gets mad when she can't make a turn and I am not helping, no one gives a sympathetic look, instead, they say " You can do that" or to me "Don't let her give up now". People share your delight with the arrival of new equipment. Equipment is power and freedom. Wrestling that spoon means self feeding is even on the radar. Spewing the drink out all over me is irritating, but drinking from a straw is a priceless skill -never under estimate the freedom a child drinking from a straw gives you. You may see a mess, but I see a child who can get a drink in the school cafeteria.

L has some really rough days and we pray for healing, strength and patience on a moment by moment basis, but I am also very thankful for the strides she has made and the opportunities we have been given. Nothing is "wrong" and she isn't "a poor little thing." She is a fabulous little girl with a lot harder climb than you or I. She is a spitfire rebel determined to do things her way. She is power. If you doubt that , let her take a bite of you. We all have bruises and scars that prove it. She may not be as verbal as we like, but those closest to her know the translation "I WILL BE HEARD!"

L's New Wheels

How very exciting!! After 3 long months of waiting, L's wheelchair finally came in and as B said "it just looks so cute!" We have so many things to be thankful for today. These same therapists and equipment people worked with L 3 months ago, and they could hardly believe the changes in her. She showed better body control, was more verbally expressive and best of all had a great attitude. Even with no nap and a lengthy drive before hand, they described her as "funny." She kept them in stitches, even when she became fascinated at being able to hang almost upside down in the seat with the seat belt holding her in place. This caused her to throw up, but even that was met with little girl giggles. L is delighted by her mobility and is already working hard to control the chair on her own. Just to make sure it was J proof, every safety/ anti tip option available was added to it. L definitely has backwards down, forwards is a little harder. My walls will never be the same again. I hope you can tell from the pictures how very small it really is. I told several people, I was sure it was ordered from the American Girl doll catalog. Don't get me wrong, we still have some rough days, but I know God is at work and only He could as Brian said " give her back her smile."

Wax Museum

H's class did a fabulous job learning about famous Americans and then sharing the info with other grades and of course Moms! Can you find H? She is Sandra Day O'Connor, but she also made Amelia Earhart's plane. Others pictured are Elizabeth Blackwell, FDR, Elizabeth Stady Canton, JFK, Benjamin Franklin, Wilbur Wright, Thomas Edison, Neil Armstrong, Harriet Tubman, Jackie Robinson, and of course Einstein. The funniest part was how close to each child's personality was the great person they portrayed!

Big Red School Spring 2009

Oh how we have loved Big Red School. I can not say enough about the wonderful things that Miss Lisa and her students are doing. Every city in America should have such an innovative program. It is wonderful for J, but it is an absolute blessing for L. She has made such great strides. At the closing program, she did not sing or do the motions, but she sat in her little cube chair as part of the group without getting upset. When the parents clapped between songs, she clapped with them and smiled her ear to ear grin. She loves being bragged on! J didn't sing either, but he did at supper that night! I especially want to thank L's Miss Jennifer (the blonde reading the book). On good days and bad, she met L at the door with a smile and excitement about all the possibilities of the day. She was patient, firm and kind despite L's sometimes abusive actions. I know she is a big part of the reason L did so well. Who would have thought that the same child who couldn't even sit up in a grocery cart a year ago would be working on getting in and out of a cube chair on her own. We love people that love our children and I adore those who find ways to open doors. Thank You!!!

75-25

During our almost 13 years of marriage, Brian and I have had 4 rather rocky times. By rocky, I mean more than the usual arguments, issues that run much deeper than "your late" or "you forgot such and such" and longer lasting than a day or so. 1, 2 and 4 all had to do with transitions after kids. 3 is the subject of a book, not a blog so lets just stick with kid adjustments. Nothing can prepare you for the changes kids bring. Both the social worker and our sweet friends Eddie and Susan tried to explain this while still calling children a blessing. Others did it in less than nice ways, but I'll also leave that for my scathing tell all. (Just kidding) Reality is hard. Brian is a workaholic who constantly worries he won't set a good example for his employees. I am a perfectionist parent who believes anything less than Martha Stewart, June Cleaver and the proverbs 31 woman rolled into one is failure. We ran head long into the whole parent thing.
The first was the hardest as we completely upset our established roles and learned the new guidelines. How late could/should Brian work? How much personal "play time" was appropriate? How many "good" things could we manage? When was one parent enough and when should both be involved? What was our personal parenting style going to look like? How were we going to handle the reactions of others when and if our parenting style didn't look like theirs? Not to mention just figuring out how to manage day to day life with much less sleep and more things on the to do list.
We thought we were prepared for this with number 2, but once again we were knocked off our socks. After a few months of feeling like a total failure, we were blessed to have a fabulous social worker who saw all the red flags of attachment disorders. I won't go into great detail here, but attachment disorders are ugly things. It took alot of time, therapy, commitment and rethinking how we did some things to get through this. We hope the worst is behind us, but this little issue still rears its ugly head from time to time.
Enter the arrival of J and L. This time we had our eyes wide open. We understood attachment disorders and were prepared to make whatever drastic changes might be required. We were united on our willingness to draw firm boundaries if that's what it took to deal with the issues under our own roof. We understood that L had more special needs than we had ever dealt with and that there were many unknowns. We knew life was about to get infinitely harder. We knew this was clearly what God was calling us to do and were and continue to be humbled at the trust he has placed in us. Before Brian made even the first trip to Russia, we made some agreements. We understood that priorities and choices would have to change. Brian was going to have to cover more at home and both of us were going to have to be flexible. Brian was going to need to be in earlier or even for chunks of time in the middle of the day. I was going to have to be all right with Brian going back out in the evenings or early mornings. We were both going to give up some outside roles at church or in the community.
I wish I could tell you this was a seamless adjustment, but of course it wasn't. We had some battles as we literally worked out a life that we can all be satisfied with. (This is an ongoing activity.) Brian has really tried and he makes countless sacrifices. Some days we wonder if they are the right ones, but then we have moments....

• B had a particularly bad day including ongoing troubles with 2 other girls in her class. H offered to punch one of them in the nose. No violence is not the answer but we worked hard for united sisters.
• J and L have a small closing program at the same time as B's knitting class. "I can always go to knitting. I want to see J and L's program."
• And my personal favorite.... Brian needed to be on the computer for an Internet sale during the evening crazy hour. I am trying to get supper on the table, B and H are working on homework, J is wreaking havoc. L really need meds to kick in. Brian finally comes and gets L and then holes himself up in the office, bidding with her help. Hope we didn't buy anything extra! Brian finally gave up and joined us for supper. We could still hear the computer going and Brian's phone was ringing off the hook. I thanked Brian for making this choice. Had smiled and said, " that's because Daddy's heart belongs 25% to cattle and 75% to us" Brian laughed and smiled at me "that means I've come a long way!"

Easter 2009

H's mouth is full of marshmellows!

I bought the overly complicated egg kit, which included paint for my artist.

All J's eggs ( along with his hands) were in the green family. At least he matched Grandma's shirt.

Never Give Up

So we're not giving up. How could we! Even though on the outside it often looks like things are falling apart on us, on the inside, where God is making new life, not a day goes by without his unfolding grace. These hard times are small potatoes compared to the coming good times, the lavish celebration prepared for us. There's far more here than meets the eye. The things we see now are here today, gone tomorrow. But the things we can't see now will last forever.
2Corinthians 4:16-18 MSG
When I woke up this morning, my first thought on this post was to call it "Private Hell". After reading my devotional, I have a slightly different outlook. Plain and simply, L has had a really rough week. She is literally bloody and battle scarred. Her hands and arms are covered with bite marks and bruises. Brian and I both have marks on our necks and shoulders from twisting pinches and B has a welt from a bite that L could not release. She was so out of control yesterday at Vandy that one therapist cried and the other went for backup to observe L. No one knows what to do. The CP specialist and the neurologist are consulting on meds and the OT is researching clinics that deal specifically with self abuse. As we drove home yesterday, I watched in the rearview mirror as L screamed and arched her back against the seatbelt and pulled hair and rebloodied the ear that we can not get to heal. I couldn't help but think this must be what Frank Perretti is describing in his books about demon possesion. Some vice like grip has control over her mind and body making her oblivious to the pain she in inflicting upon herself and unable to be comforted by anyone or anything. It is as if she is locked in some room screaming for help, fighting off the evil captors. Only the locked room is her own mind and the captors she is fighting, the very people who love and cherish her. As hard as this is on us to watch her, I am sure it doesn't touch the pain she is enduring.
I have to admit I went to bed and wokeup emotionally exhausted and simply beaten down. I recently gave up more indepth Bible studies for a time because they had become just another pressure instead of quality time with God that was often rushed or simply put off. I did pick up a devotional book by Jennifer Rothschild. At this time it has proved the better choice as each entry is the small nugget of truth or wisdom I need to get through the day and can squeeze into few minute segments. Today's devotion was about a little girl born in another country without arms or legs. It told of her mother's struggle to adopt her and of her daily "walk" of faith and the lives she impacts from her story and actions. Thanks God for the always perfect timing. It is a fact that at this time in our lives we are fighting a battle as never before. It is harder than I ever anticipated and I need a lot less me and a lot more God. Medicine and therapy may not be bringing these walls down. It is time to gather our armies and march around the walls blowing our trumpets and shouting for joy. He is still the Mighty Messiah who manifests miracles.
We will not give up.

When the cats away....

Shh...We have a secret. When Brian is away, the girls and I eat very differently. Before meeting Brian, I could probably have become a vegetarian with little effort. Don't get me wrong, I love a good steak, but after awhile, meat begins to bore me and I am left longing for the variety that only fruits and veges can provide. Most days I set this aside, and in the interest of family unity and my iron issues, fix well balance meals with portions of meat, grains and vegetables. The girls however, have stronger feelings than me. Most nights, my sweet girls sit down at the table asking how many pieces of meat they have to eat in order to be excused. They may not love whatever vegetable we are having, but this is not what keeps them languishing at the table or drives them to hide food under the chair cushions. This honor belongs exclusively to meat.



As a houseful of secret carb and vege loving women, we begin our Daddy free days with pancakes or french toast and fruit and not a sausage link to be found. We lunch on salads and cheese filled pastas and consume way too much chocolate. (another item Brian doesn't really like) J has been a little harder to manage. It must be a male thing, but he hits the bottom of the stairs asking for sausage and eggs, and loves hotdogs. I am sure it is only a manner of time before he insists on either going with Brian or demands to see red meat on the table at supper. By the end of our weekend or business trip, we of course go back to our balanced protein diets. We love Daddy more than our secret vegetarian life style. I would venture to guess he didn't eat a single vege while he was gone so I am sure it all evens out in the end!



Double Chocolate Brownies



3/4 cup butter

4 oz unsweetened chocolate

2 cups sugar

4 eggs

1 1/4 cups flour

2 tsp vanilla

1 bag milk chocolate chips



Heat butter and chocolate together until blocks of chocolate melt. Stir until smooth. Cool slightly. whisk in sugar, eggs, flour and vanilla. Stir in 1 cup chocolate chips. Pour into greased 9x13 pan. Sprinkle with remaining chocolate chips. Bake at 350 degrees for approx 35 minutes

Look What I can Do

L is still army crawling as her primary form of mobility, but she is much faster and can get from room to room with relative speed. She has also begun to pull up to tall kneeling and be able to play from that position. Last night she discovered the kitchen cabinets and had a wonderful time opening and closing doors!

J & L are 3!!!

J and L turned 3 February 26, but the party had to wait for clear spot in the schedule. Grandma and Grandpa got to come and we put them to work all day in order to be ready. Thank you!! J is a huge Mickey Mouse fan and it was a party theme that worked for both. L didn't get the hands in the cake thing on her second birthday, but she did this time. Sometimes we need to be thankful for small steps and I was thrilled to see those finger marks across Mickey's face. J just loved opening presents and being the center of attention. He is the private Ken doll to his four cousins who dressed him up in assorted dress up outfits and then he would run into the dining room yelling "Da Daw!" All in all a good evening. We just won't discuss the artichoke chicken that did not want to cook.

Just Horsin' Around

B has struggled to find an activity she enjoys and lasts longer than six weeks. This fall she began taking horse lessons once a week with the goal of riding contest. She has worked through lots of nerves and struggled to find a horse that matched her personality, but this spring we seem to have found a match. Ginger is a paint that belonged to another young lady in the community, but as she is a teenager now and moving onto other things Ginger was looking for someone new to belong to and B loves her. They have had some wild rides where Ginger did considerable bucking etc as they figured out who was in charge. ( Truth be told, I am still not sure which one of them is in charge.) B has also had to adjust to her instructor. He is really good, but a little loud and has high expectations- thus more than a few tears. Saturday morning, B rode in her first show. She ran the barrels as an exhibition only, but I couldn't be prouder. I did ask Brian how both our girls got interested in very expensive activities that have a show time of 2 1/2 minutes (cheer) and less than 30 seconds (horse). Oh well, no value can be placed on hearing B's instructor say "I'm proud of you, girl." and watching that shy smile cross her face.

Too Cute to Not Post

Copper Mountain 2009

S-C, Brian, J and D. It's Wonderful to have cousins to play with!

Daddy and J tried sledding outside the house. J was a little young for skiing, but we loved watching from the house which was right on the slopes.

B is our ski wonder. She loves moguls and trees!

H tried snowboarding and absolutely loved it.

We laughed on this trip at how much has changed since we started this annual trek. The colors are much more muted. B's brown coat is the new style. We used to all have wild hats, but now we wouldn't dream of sending the kids out without helmets and most of the adults wear them as well. Snowboarders once seemed a little out there. We now have 2 boarders in the group. We are bigger and louder, but still having a great time.

Cowboys

One of the greatest blessing of my life is that I am married to a modern day cowboy. What better way could I explain the man that had me branding and vaccinating cattle before we were even engaged. He looks a little different than the fictional image. Except for "fancy" events he doesn't wear a cowboy hat or boots, but instead has on coveralls and red wings. (He keeps a pair of Crocs under his desk for when he works inside.) As the business has grown, he spends more times in meetings and his phone is always at his side. He hasn't lost his drawl or his do what needs doing no matter how dirty or disgusting philosophy, but he is always on the cutting edge. He is looking for ways to capture methane from deceased cattle to be able to produce electricity. He is a first choice of pharmaceutical companies to run tests on drugs because he does such an amazing job. He can ride a four wheeler through mud and muck to capture lost calves and just a few short hours later be in discussions with college professors and consultants.

He is also a renaissance man. One of my greatest frustrations are people that some how or another believe living on a farm means we don't know about or appreciate culture beyond our back door. Brian has escorted me to CATS and the Russian ballet as well as a few George Strait concerts. He has a more developed palate than I do and I have the culinary experience.

But perhaps my favorite blending of old and new cowboy is the genre of cowboy poetry. We were first introduced to this art form a few years ago when Brian attended a reading by Baxter Black. Inspired and delighted by his writings, Brian came home with a book that he read from after supper for many nights. Listening to him dramatically read the carefully crafted pieces that so mimicked our own life, I fell in love all over again. This year I was unable to attend the NCBA with him, but Brian brought me home a wonderful gift- a collection of poems written not by a cowboy or a rancher, but a farm wife. Oh, how I have savored this prose whenever I have a few minutes to snatch. I am not sure this lives up to Emily Dickinson or Robert Frost, both of whom I enjoy, but for this moment in my life reading cowboy poetry feels a little like having a good friend to tea and for a moment I am not so alone, and my cowboy is a prince.

Outside Circle

by Audrey Hankins

In my youth I envied my cowboy

Riding out, decisive at dawn,

While my fetters of babies and bottles

And cooking and cleaning dragged on.

I wished for a careless, ready laugh

For loops that sped straight and fit.

I could have picked replacement heifers

And done a good job of it.

I longed for that outside circle

And sharing at end of day

As I told my tales of triumph

Over cattle that didn't get away

I was a misfit female wallflower

Watching an all male dance.

Long, long I poised on the sidelines

Waiting, hoping for my chance.

I wasn't invited to his party.

I tagged along against advice

Like an unwanted pup who follows

After you've rocked her homeward twice.

But even a pup who's being ignored

Can pick up quite a bit

And eventually time rolls around

To where the man depends on it.

I'll never make a top hand

Or tie wild cow to gentle tree,

But now as he takes the outside circle

Cowboy calls my name and whistles to me.

Catching Up

No, I have not fallen off the map during the last month as some of you may have suspected. We have been overwhelmed by events and activities, both happy and sad, that have kept us barely coming up for air.


We said good bye to my grandmother and Brian's within a week of each other. Two weeks of funerals is enough to put anyone over, but it was particularly hard on J and L. They did not make the trip to Mississippi, but the separation was a challenge. Everyone deals with grief differently and emotions tend to run high at these times.


We have also dealt with several L issues. She is pulling out hair and harming herself so we had to begin discussions on altering or adding medicine as we continue to look for ways to diffuse some of her frustration. She will be evaluated and measured etc for a wheelchair on Thursday. L is a 3yo stuck interacting with the world from a flat instead of upright level. She needs a consistent form of mobility. Having become fully entrenched in the world of pediatric drugs; those parents questioning the appropriateness of medicating a child don't have a child truly in need of medication. When you child is driven to biting themselves and looks like they have recently begun chemo you are open to almost anything.

On happier notes, Brian and B are both involved with the inaugural season of Upwards basketball at our church. It has gone extremely well. Brian has overseen referees and I think it has a proved a much more difficult job than he imagined. Of course the Upwards season has run concurrent with a crazy cheer competition schedule, so we have often had to "divide and conquer", a parenting plan we both detest.

We finally were able to celebrate Christmas with the Bush family last weekend and held a surprise 60th birthday party for my dad on the Sunday. Good food, friends, family and memories. Lots of blessings for all involved.

Add in stomach flu, sinus infections, H's 8yo birthday slumber party, National Cattlemen's Meeting and a few snow/ice days and it seems the last 6 weeks or so have simply flown by. Here's to a slightly slower spring.