Monthly Archives: September 2012

A State of Thanksgiving

The support was amazing and almost as overwhelming as the journey we were going through. Karl and I cried and each took turns pretending we were strong enough to tell our little girl that she had a mass on her brain. In the end, the diagnosis was Acute Disseminated Encephalomyelitis or ADEM. It took two MRI’s a spinal tap, many blood draws and physical examinations to get to the diagnosis, but once there, effective treatment began.

When it was all said and done, there were many things we learned. Did you know that ADEM is rare in children and that it quickly becomes life threatening as it is often misdiagnosed in smaller, untrained hospitals? The time to get effective treatment is critical and a misdiagnosis can leave behind a child with many long term recovery issues because the treatment was delayed. Greta’s first major symptom of vision loss in one eye was immediately met by her physician with a CT scan. Quick action for which we are thankful.

When the scan showed the mass on her brain, our little Greta was sent straight to Dallas Children’s Medical Center. In the end, we learned that this facility is one of two hospitals in the country with active programs treating and studying the rare demyelinating diseases. We are thankful.

I joined the Transverse Myelitis Association (TMA), a group that serves as support, awareness and education for patients and families of the lesser known demyelinating diseases: ADEM, Transverse Myelitis (TM), Neuromyelitis Optica (NMO) and Optical Neuritis. By staying connected to this organization, I became aware of other families in their struggles with these life changing diseases, especially ADEM. Many of the children were misdiagnosed. Many were victims of delayed treatment. Most of them are in a great struggle to regain a sense of normalcy in their lives due to the devastation of the disease. And Greta? She rides her bike, goes to school and loves a grand adventure of trying something new with friends. We are thankful.

A glimpse of a show from the current season of Master Chef shows a blind competitor. She wasn’t always blind. As a young person, she got NMO and is now unable to see. Yet despite this great impediment, she pushes on to do what she loves, cooking. I look at Greta and she has regained her vision and carries on normally as a super reader. We are thankful.

In my latest communication with the TMA, I got connected to a forum of people dealing with ADEM, some of the patients children. I read their stories and realized once again how many miracles took place in Greta’s life and in her experience, still ongoing, with ADEM. She is still being monitored and she is still undergoing evaluation to see the extent of any possible brain damage due to the lesion in her brain, but she functions normally.

I have been thankful for Greta’s treatment and recovery. But the more I stay connected to others dealing with the demyelinating diseases, the more thankful I am. I find it very easy to be in a state of thanksgiving when I look at my active and full of life daughter.

When I was a kid and I read Bible verses about always being thankful, I couldn’t imagine. I just couldn’t seem to wrap my mind around why anyone would want to be thankful more than once for good things that happened. I was a kid who just wanted to say thank you and run off to my next adventure. Going through this journey with Greta, I see things differently now.

Perhaps, just maybe, the reason we aren’t thankful, is we aren’t aware of how band things really were or how bad they could have been. Did your house burn down and you lost all of your earthly belongings? Perhaps by connecting with others who experienced this loss, you may realize that you were blessed. They lost their belongings and members of the family. Did your spouse lose their job and the unemployment sent you into a financial tailspin? By reaching out to others in this situation, you may find that they lost hope and their family split up.

If you have been through a trial and have come out on the other side, by reaching out to others you can lend support and help. You can also learn to be in a state of thanksgiving.

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Filed under ADEM, Community, Family

Drift Vs. Discipline

Just to set the record straight – discipline is training, not punishment. A well disciplined soldier is a well trained soldier. A well disciplined child is a well trained child. So when I think about Drift vs. Discipline, I’m thinking about when we get out of training and just kind of drift along. It is failing to follow through on what we know will help us achieve our goals and just sort of hope it happens naturally. Are we messed up in our thinking or what?

There are four spiritual disciplines that share a unique relationship: fellowship, study, prayer and solitude. Fellowship and solitude each enhance study and prayer, but they are opposite of each other. These are also four of the first targets of drift. We tend to drift out of fellowship with like believers, drift out of that quiet time each day with God. We know we should study and pray, but we choose to drift along because the schedule is tight today. Eventually, due to the lack of discipline or training, we become out of shape. We become spiritually out of shape.

There is a saying that faith walks out when fatigue walks in. Drift can happen quickly during times of ill health, stressful situations, financial crisis and so forth. Things that wear you down and wear you out – fatigue – can wear down your faith; unless of course you are well disciplined. Even if the crisis causes you to miss a few days of Bible study and prayer, your training will eventually draw you back to what has given you strength.

So what’s the answer for drift? Discipline! Be well trained during the times when things are going well. Get your mind and body used to times of fellowship. study, prayer and solitude when there is no temptation to follow the lure of the drift. When things go wrong – and they will – you will return to what you know and the strength you receive from that training.

It is football season and I love watching those long passes. The quarterback sees his best shot and throws. The receiver is still running, not even looking at the QB and just at the right time, he turns around to make eye contact and catch the ball. Think that happens by accident? It’s called training. It’s called discipline. That play has been rehearsed so many times that it comes naturally to the receiver to turn around and catch the ball at the right time. The ball doesn’t accidentally drift into his hands. He’s been trained to catch it.

The spiritual disciplines are there for your training and development, because a continuing relationship with the God of the universe doesn’t happen by accident. Don’t get me wrong. Let me say it loud and proud right here – Jesus did it all and there is nothing we can do. It is all Jesus, reaching out to us and starting that relationship with us. It is all Him. But once that relationship is started, He wants you to grow and develop and follow Him. That happens with discipline, with training as you choose to stay in that relationship that Jesus has initiated.

Ready for training?

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I Am Not Alone

So our daughter decides that having a rare in children autoimmune disorder isn’t enough and has to test positive for three food allergies: wheat, egg whites and peanuts. Although some experts say there is a high incidence of false positives in these tests, we are still taking precautions and carefully preparing her food. Peanuts is the easiest one. It is a common allergen and there are already many products proudly boasting they are safe for kids with peanut allergies. Bring on the Almond butter!

The wheat is giving us the most grief. We found a load of bread that was gluten free, but it had egg whites in it. It is a huge chore! Yesterday for lunch, I made grilled cheese sandwiches and potato carrot soup. Greta noticed that her bread looked different from all the other plates of sandwiches. She started to complain and felt all alone. “I don’t like feeling that I’m all alone.” I quickly reassured her that she wasn’t alone. Everyone else in the family can eat cheese, but I can’t. I have Crohn’s Disease and a colon resection to thank for that. As soon as she was reminded that she wasn’t the only one, everything changed.

Who likes to stick out for the wrong reasons? Who likes to be the one that everyone “feels sorry for” because they are so different? But the truth is that most of us have a special need here or there. Some are just more obvious than others. One of the recent trends that I’m learning to follow is bringing awareness to those who suffer in silence. There are many illnesses, diseases, home situations, and so forth that it isn’t always evident just from the outward appearance that a struggle is even taking place.

Because it has to do with that part of the body that a lot of people don’t want to discuss, Crohn’s Disease and similar issues weren’t talked about much. But the truth is: everybody poops! I’m seeing more and more people that are talking about their issues in a productive way. This is a good thing. Why? Until I joined http://www.chronology.com, I didn’t realize there were others out there that experienced pseudo fevers like I did. I didn’t realize there were others out there who went misdiagnosed for years as I had. I found a place that showed me I wasn’t alone.

Most people want that. Even the solitary types want to know there are other solitary types out there, even if they don’t want to meet them. It’s just good to know you aren’t alone. Once parents of children with allergies started banding together, we got more options to offer these kids. When we suffer in silence, nothing gets accomplished to help make a difference. When we take the time to get to know one another and share what is really going on: we will find we are not alone and working together we can effect change. Examples? Now that we know peanuts are a common allergen, there are some elementary schools that have banned peanuts and peanut containing products. There are so many other options out there and people can eat all the peanuts they want at home. The Center for Courageous Kids holds a summer camp each year for children with severe allergies and their families. In fact, that’s all they do, hold summer and family camps for kids with different issues, including asthma, multiple sclerosis and transverse myelitis.

Kids that have been through so much see they aren’t alone. Maybe you need to see you aren’t alone as well. Do a google search and see if there is anyone else out there “like you” and see what you can learn. You just might be part of a miracle of making a difference!

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Affirmation

Watching “Aha!” moments on the faces of husbands and wives as they start to “get it” about their marriage is one of the many reasons my husband and I love presenting marriage seminars. One area in particular deals with the essence of who your spouse really is and the tool we use to discover that is “The Flag Page.” We recently interviewed a couple where the wife came to tears, finally understanding her husband and why he did what he did. Those moments are priceless and rewarding.

While the Flag Page is web based and designed for adults and teenagers, a board game version was also designed to be used by younger children. I recently helped a mother and young son do his flag page and again the lights suddenly came on and there were “aha!” moments. This young man is very special. He is the baby of the family, the youngest of five children, yet born with strong leadership skills. That’s a tough job.

How does the baby of the family get affirmed for who God created him to be? How do parents hone those God given leadership skills while still maintaining loving parental control? It’s not an easy task. I know from experience because we have the same version in our family. Our youngest child is the one with natural leadership personality and skills and she’s a girl on top of that!

Did God make a mistake? Did he mess up when He decided to put these leadership qualities in the youngest children in these two families? I don’t have too many problems with the atmosphere, animal life, foliage and landscapes – except for any damage we’ve done to them; so I think God did a pretty good job. If He did it right on these big things, I’m sure He got it right on the small things as well, even down to putting leadership skills in the youngest child in a family – even if she is a girl!

Affirm people for who they are, for who God made them to be. I’m not talking about helping people continue in bad habits and choices because we’ve all got rough edges that need to be polished. I’m talking about the basics of personality, the essence of who God created them to be. Affirm that. Be intentional about affirming the peacemakers, the managers, the leaders, the artists, the make it happen folks and those who make sure everyone is included and accepted.

This mother and son, life is going to be different for them from this point on. Take the time to learn about those you interact with and help them be all God created them to be. The Bible calls it one of the spiritual gifts – the gift of exhortation, strongly encouraging someone to do what God has called them to do.

 

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Ask Any Question

I recently did a presentation for a girl’s club campout. I enjoyed just hanging with these girls, about the same age as my oldest son, and picking up a guitar and surprising them with a couple of songs (very simple ones though).

The organizer of the campout had planned for several speakers, a few about 15-30 minutes long and then my presentation was supposed to be at least 45 minutes long. I arrived early enough to have some time to hang out with the girls before my presentation when I learned of the organizer’s dilemma. Two of the speakers she had arranged weren’t able to make it. While the girls were enjoying a relaxing, no fuss time, it was also evident that they were wondering why they couldn’t just move on to the next fun activity, since the speakers hadn’t shown up. That’s when I found my bravery.

“Okay girls, listen up.” I proceeded to lay out the rules. “This is your one chance, a freebie. You can ask me anything you want, and I will give you an answer.” Surprisingly, quite a few of the girls took me up on my offer. Of those few, there were about three that asked the majority of the questions. I answered questions about my faith, my family, time travel and choices. It was interesting to see how the questions started off on the surface, the girls appeared to be testing me. Would I really answer any question?

I hope the girls had fun and that they had a chance to see an adult that wasn’t afraid to connect and relate to them. But I have to thank those girls for making me think. One of the deeper questions, that I knew would eventually come up, was the big would you do your life over if you had the chance? I didn’t answer right away. I had to stop and think about it, especially after dealing with time travel questions and all of the issues of messing with the space/time continuum. Finally I had my answer.

“I wouldn’t change anything major in my life. I would still have the children I have. I would still marry the person I did. I would still do the work that I am doing. But there are many little things along the way that I would have changed.” I then began to give examples, such as the time I didn’t truthfully stick up for the impoverished girl in my 3rd grade class. Most of the other girls in our class picked on her and made fun of her. She was new and obviously different from them.

Back in the day, the breaking news was the semi-automatic paper towel dispenser. The teacher lectured us more than once that we must only push the lever for paper towels twice. No more than two times was necessary as we prepared to dry our hands. There were a few girls that couldn’t resist pushing the lever multiple times because it was new and different! They managed to tell the girls they would get the towels for everyone, so they could get their lever fix. Oh the joys of new technology! But one day, the other girls decided to use it against the new kid. They fabricated a story that this new girl had pushed the lever more than twice. Oh the horror!

I and a couple of other girls were not in on the conspiracy. The teacher specifically called on me. “Sharon, did she push the lever more than twice?” Knots formed in my stomach. Just imagine one of those peer pressure scenes from your favorite movie or TV show and you can imagine the spot I was in. I looked at the gang of girls who were staring me down. I glanced at the poor girl they were tormenting. I looked at the teacher and I couldn’t say a word. I only nervously nodded my head yes and then wanted to run away.

I believe the teacher could see my struggle. My memory isn’t so good, but I’d like to think she went easy on punishing the poor girl accused of violating the lever rule. I never spoke to that girl about the incident. I never apologized for not sticking up for her. I don’t even remember her name. But if I were going to redo one thing in my life, that would be it. I would have told the teacher the truth, that I honestly didn’t see her do it more than twice and I believed the other girls were just out to get this one poor kid. I wish I had called her by name and said she could be my friend and we would have a lot of fun together, starting at recess.

But answering this question by a bunch of teenage girls on a campout did more than make me wish I had done the right thing. It forced me to recognize that out of all of the other girls that weren’t in the gang, the teacher called on me to tell her the truth. This now sticks out in my brain. I am so thankful that this teacher saw in me the potential for telling the truth, no matter what, even if I let her down. At least she looked at me as someone who could tell the truth, if she was brave enough.

So now I want to be brave enough, always, for that 3rd grade teacher, for that poor little girl and for myself. I want to be brave enough to always tell the truth.

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It’s all in the Fettucini

I once knew a woman that always checked out the bathroom of any home she was visiting. She said it was her way of finding out what they were really like. It was a rather odd thing to say as she was visiting the home of my grandparents after my uncle had just died, but it has certainly stuck in my memory. The bathroom was her test. To this woman, the cleanliness of the bathroom indicated whether or not this family really kept things tidy or just managed to shove a few things out of the way when they heard the doorbell ring.

I don’t go around testing the homes of other people. I have three active children, therefore I have enough to worry about in my own home! But we do test Italian restaurants. I have a very simple test – is there anything here I can eat? I’m a bit of an oddity, as I’m a vegetarian that can’t eat cheese trying to eat at an Italian restaurant, but I manage. It’s a very simple test – is there anything here I can eat? I’ve only been refused service at one restaurant, which by the way has since closed down.

The real test for Italian restaurants is the Fettucini Alfredo. First of all, is it delicious. Secondly, is it consistent. My husband devours Fettucini Alfredo, or for some of you, Fettuccini Alfredo. Truthfully, it used to annoy me that he wouldn’t try anything new at an Italian restaurant – it always had to be the Fettucini Alfredo. Alas, years of working on our marriage and seeing that he is not like me and I am not like him has produced in me a new appreciation for his Fettucini test.

On a recent medical trip for our daughter, we stopped at an Italian Restaurant we had never eaten at before. Of course Karl ordered the Fettucini Alfredo. As soon as the steaming hot plate of deliciousness was delivered to our table, I could see him giving it the visual part of his test. This plate passed. I began to ask the normal questions. How does it compare to such and such restaurant? I’m always amazed at how many ways there are to describe the experience of eating various versions of Fettucini Alfredo.

There was one restaurant in Shreveport, Louisiana, that had the most beautifully paper thin fettucini that melted in Karl’s mouth. We decided to go again and take friends to share the wonderful experience with us, but the restaurant wasn’t consistent. They no longer have a great rating on Karl’s Fettucini scale, but he still remembers that one day he got a really good dish of it there. It remains the one dish of Fettucini Alfredo that he judges all others by.

As stated before, it used to annoy me that my husband always and only ordered the same thing at Italian restaurants whereas I love to try whatever I can eat! But I’ve learned, much to his joy, that this is a process for my husband. This is how he makes the connection of what he likes and doesn’t like. It’s how he analyzes (he does this a lot) to determine if this is a restaurant worth coming back to or not. If I try to persuade him to eat something else, I’m robbing him of his connection – of how he rates Italian restaurants. To his credit, however, my husband will try other dishes once he has eaten at a restaurant before and has had enough experiences with their Fettucini Alfredo to warrant a slight deviation from the standard order.

How do you connect with your neighborhood? Is there one particular part of it that you always use as a guide for how your little corner of the world is doing? How do you connect with your larger community, your kids’ schools and your local government? Your local City Council meeting won’t be serving Fettucini Alfredo for you to taste and see where they are at, but I’m sure there are other ways you can gauge your community. Take some time. Get connected. If you find your community isn’t what it used to be, get involved and turn it around! It’s easy to stop going to a restaurant because they aren’t consistent in the food they prepare and serve, but you can’t just leave your community. Get involved and make it great!

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Waterfalls

I love waterfalls.

That sentence deserves space all to itself. Ah, waterfalls! What’s not to love about a waterfall? My husband knows of my love for waterfalls and managed to surprise me a few years ago with one of those “moving” lighted pictures of a waterfall. I love it!

Last night, it was my turn to select my favorite thing in the “Apples to Apples” game I was playing with friends from church. There in the stack of cards I was to choose from was, waterfalls. There was no question about this one. I had to choose waterfalls! Others in the group thought I should have chosen their card and therefore given them the point. My friend that was sitting next to me simply smiled and said, I know she loves waterfalls.

What is one thing you know about the people you interact with? What is something that always brings a smile to their face? What is the one country the have always loved to travel to? Go ahead, take the time to get beyond the casual chit chat of the weather and really get to know the people around you. Who knows what amazing discoveries you might find!

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