Endurance

I was never a fan of being woken up in the middle of the night. Many nights when I woke up by crying babies I stuck to the words of wisdom of others that said "this to shall pass."

In talking with a dad of two small children recently he said "I can't wait until this stage of life is over." I remember thinking the same thing, when the kids are old enough to sleep through the night, life will be better. When they can get up and get a drink or go to the bathroom by themselves this will get easier.

Unfortunately this stage of life has become our families Groundhog day moment, it just never stops. As Ayden finally got over his sleep walking and going to the bathroom in closets, and in doorways we thought now we can sleep in peace. But with Kyle's condition deterating we have reverted back to the days of getting up every 3-4 hours to turn him over, or have him go to the bathroom or get a drink.

I am not a happy camper when I am woken up in the night, and poor Jill has had to deal with that for much of our marriage. The future is daunting when it comes to night and sleep. To think this could be our life for the next decade or two is frightening to say the least.

Even though we knew this was coming, I am not sure how you prepare yourself for this type of challenge. We can no longer have a baby sitter for Kyle for long time periods, due to his size and lack of mobility. The other day we had a college girl watch him but we made sure he had used the bathroom before she arrived and just prayed he didn't have to go while she was there.

What does life look like for the next 10-20 years? Reality sets in at every front. Just the strength and will power it takes from doing ordinary tasks take up most of the energy of the day.

So as you think about us pray for endurance. The sheer weight of Kyle and lifting him into the car or the bathroom or his bed can be so physically demanding. I was thinking of starting to take my own steriods, a great by product would being able to hit a softball much further. :)

Even as we go through this period of life, it is good. Christmas was great Kyle got his tigger bed and was thrilled. He got a few other items that he wasn't so happy about and told us "these were not on my list take them back." :)

As we begin 2012 we have no idea what adventures, pain, happiness, joy, and struggles will be faced. But we have no doubt that the endurance God ahs given us thus far will sustain us throughout the next year.

a 4 year olds mentality of Christmas

As Ayden and Ellyse have aged over the years we have seen them pass Kyle in maturity, and intellect. They both seemed to pass Kyle when they were about 5, we could see them begin to comprehend and understand the world more than he could.
So even as Kyle is biologically the oldest he is now in almost all instances the baby. He is the little brother.

There is a big difference in the way a 4 year old views Christmas as opossed to an 8 year. As our kids get older, it is hard for them not to view Christmas as the wishlist for life, whatever they want they put on a list and they have the expectation they will get it. It is a fight against the consumerism mentality that privades our culture.

With a 4 year old there is still a sense of awe and wonder. There is an excitement and a simplicity of thought when it comes to Christmas. There is a sweet understanding of the real meaning of Christmas, the gift giving and other traditions.

Kyle's one hope for chistmas is a bed for Tigger. As the other kids hope for electronics and other expensive desires, Kyle's desire is simple.

Kyle continues to bring a good perspective to the holidays. He got more than a little excited when we put up the Christmas tree, played christmas music, and drank eggnog. He has enjoyed each small little part of the holiday season.

We have a perpetual 4 year old in the house for Christmas each year, and that is not a bad thing. As life gets hurried and out of perspective Kyle brings it back with a comment, or we adjust our schedules to his physical limitations. It slows us down (in a good way).

As Ayden wrote in a paper for school this week- I want my brother to have a good Christmas- we know that he will and he will bring joy and happiness to each of us because he is with us.

Kyle is a present God has given us along with with our other two children. As we celebrate Christmas and God's ultimate gift to us, we are thankful on a daily basis for the little things he gives us.

The rest of the story

Does life happen in moment by moment time lapses? Are there moments that stand apart from everything else? Can a moment in life change your future, destiny, your kids life, and your legacy?

Or is life more of a melding together of small decisions and undercurrents that lead to the pivitol times? Is it like a tree where we see the growth but we don't see the roots system and the growth that happens below?

I have a hard time seeing random acts anymore in life, I have a hard time seeing stand alone events. Maybe on the surface they seem isolated but when looking at the back story and the small insignificant moments leading to the crescendo most of the time there is an important story that led to these moments.

Does this make everymoment in life equally important? Does this mean that what small acts of kindness or hate can have an even bigger effect long term?

Can the laziness, short cuts, or integrity make lasting impacts?

If I cheat someone of time, or money, have lack of patience, or show love and grace to someone not deserving it have long term effects?

If I turn the other cheek, or gossip? If I allow my tiredness, moodiness, and stress effect others, or if I choose compassion toward others?

The small choices in attitude and action play out both in who we are as people and the actions that will proceed major decisions.

It is easy right to use lack of sleep as an excuse. Not sleeping well,with Kyle getting us up regularly is starting to wear on all of us. General stress of life is a built in reason to excuse behavior and attitude, but life has so little to do with what we go through, rather it is my day to day response.

Over the last five years I have taught life skills in a maximum security prison, and one of the concepts that come up over and over is don't wait to change who you are until you enter the free world. Who each and every prisoner is is not going to change due to circumstances. Who I am is not going to change if I get good night sleep or not.

Sure extenuating circumstances bring out who we are, but the stress of life can not define me. It may bring to light the imperfections but the "major moments" of life expose the roots of my tree.

In the Bible there is a great analogy of a farmer pruning his vineyard and his grape vines. I recently heard that they can prune up to 90% of a grape vine to make it healthy and grow. The anology is the fruit that we are to be growing is love, joy, peace, patience, kindness, goodness, and self control.

As we encounter difficulties and every day mundane living we have the opportunities to grow our vines. Do we see the right kind of fruit? Are we producing health or is it sickly?

As I continue today my desire is to continue to grow and be the person God intends and wants me to be. The hard part is not taking short cuts.

Is everything equal?

It was a few months ago, a friend and I were driving through the small farm town of Kouts, just south of where I live. As my friend was driving we saw police lights behind us. After we pulled over, and the police officer came up to the drivers side door, he informed us we had a tail light out. He was very kind, never asked for ID, just informed us of the problem and sent us on our way without issuing a single citation either verbally or written.

I have never had a problem with the police, I have been pulled over a few times in my life, for speeding, lights out, and not wearing a seat belt. Never have I had a bad experience or one that I thought I would end up in jail or even searched for that matter.

That night as we drove north to Valpo, I thought this could have been a very different night if I had been an African American male. At the minimum my ID would have been run, and in all probability I would have been searched and possibly detained for a minor infraction.

I don't know what my expectations are in life as far as fair goes. I just sometimes wonder what it is like not to be in the majority? What it is like to live in a society that is not geared for me? What is it like to live in a world, where I am subserviant to something or someone greater?

I think quite a bit about the world Kyle lives in. Is it fair is it equal? Should it be, should it cater to him, or should he try to succeed in an enviornment that wasn't made for him. One of the sad things for Kyle is his not being able to play at the playground at school. His wheelchair can't manuver the terrain. But is this a question of should the environment be changed for one person, or should it be about the majority?

Even as we think of our family dynamics should Kyle be asked to fit into the culture or should we create culture around him? Should the rythms of life be the "norm" of our society or should we tailor our lives to his?

We have choosen as best we can to build our family culture around Kyle. Is that fair to our other two children? I am not sure, but this is what we have choosen to do.

In an ideal world everything would be equal, but the only way that will happen is when those in the majority- care, love, and nuture those that are different whether it be race, or physical or mental disability.

Whether life is fair or not for Kyle isn't the question rather it is how can we overcome these obstacles to help him be the person God created him to be?

Thankful

I remember vividly the experience I had close to three years ago. The scene was eerie and a little bizarre. On a missions trip in Mexico City we had just finished doing some painting for a women's home where most of the women were mentally challenged. The home was a mixture of prison with tiers, or a high rise apartment building. It wasn't horrible yet it wasn't a place I would want to live. The women who lived there were all dressed in red jumpsuits and there were so excited to see us that day.

That was an experience all to itself, the other part was a little more disturbing for me. Hidden in the back part of this home/complex was a nursery with 8-10 children in it. The children were all special needs in various forms. They were all in some form of cribs, beds, or cages. The smell was attricious and we were told doctors come once a month to check on the children. The special need women looked after these kids, and from the brief encounter our group had they were not well looked after. The kids did not get out of their beds often.

That image of the kids has stuck with me. How people treat special needs children worldwide is very sad. Even in America it was not uncommon a half a century ago to send people to institutions.

As difficult it is for us, I am so glad Kyle was born to us in this era and not at another time, or place, or country.

As it continues to grow more difficult with his physical needs ( he has 0 strength in his legs now) I wouldn't ever think of a possibility of sending him somewhere else.

As we spent time thanking God during our thanskgiving time, we are extremely thankful for Kyle- what he means to our family, how he has inspired us, how he has slowed us down, how he has simplified our lives.

It may seem like an inconvience when he wakes us up every two hours to roll over, go to the bathroom or get a drink but this is the life God has given us. It is tiring and I grumble, but I couldn't imagine life any other way.

It is very easy to think family, love, character and faith can come through easy times. But we have found that as we continue to ache physically and emotionally with what Kyle is going through we have grown closer to our family, and God.

The last two weeks

In the last few weeks three different events stand out:

1. Our wood flooring is done- This has been a finishing touch to a year of change to our house. I didn't see this change as important as some of the others but when Kyle would get his wheelchair stuck on the thresholds and be confined to the kitchen or the living room, it would be frustrating for him. Now with everything uniformed flooring he is able to move around the house with ease.

2. Paul and I did our first presentation on "Kyle's triathlon challenge" this week at the Valpo Rotary club. Paul did the speaking and I did a 20 minute slide show. To see the project and what has happened in the last year was very memorable. We talked not only about the triathlon but many of the events Kyle has been part of since, the upcoming book, and a corporate challenge Paul and I are working on for next years valpo tri. We haven't worked all the details but are asking business' (big and small) to race money in support for helping send kids with MD to camp. Every time I feel like the story is going to go away we recieve more chances to tell our story. We are planning at speaking at Rotary in Laporte in January and ae open to share to any group.

3.This is the hard one- as we dwell many times on Kyle's pronounced disablities, it is easy for us to gloss over Ellyse' learning and largly undiagnosed disabilities.
Ellyse has been in a special ed class at school for the past two years. She doesn't have a diagnosis, and it isn't overtly obvious. She struggles greatly in school, but with inividualized attention she has succeded in her special ed class in the last year. She is in a regular classroom for science and social studies, and then in her special class for the rest of the subjects.
Jill went to a parent teacher conference meeting last week, and texted me that was the worst meeting she has ever been at. As she was finishing up I was thinking this has to be awful, we have went to some pretty discouraging meetings about Kyle. When she got home she had hives and the stress had begun to reengage the shingles she experienced last year to act up.
Not having a diagnosis is just as tough if not tougher than having one. Ellyse by many outward apperances many seem "normal" but there is that missing connection especially when it comes to school for her to make it extremely difficult. The special ed teacher and the mainstream teacher have two very different opinions about Ellyse. The mainstream teacher believes Ellyse is lazy and daydreams too much and didn't have many nice things to say, while the special ed teacher who has worked with Ellyse for the past two years sang her praises. She shared how Ellyse has excelled and has improved greatly.
As we continue on this journey, realizing and admitting we have two special need children is unfathomable. As we continue to navigate this journey we continue to pray that God will us the grace to get through every day and every situation.

Disabled people are multi faceted.

Kyle can be defined by many different attributes, some are easy to see and put him into a box or a catagory. But some of the definitions of who he is would be a suprise. Even though Kyle has his diagnosis of duchenne muscular dystrophy and mild mental handicap, that is not where his attributes and who he is a person stops.

Some of the words, knowledge, phrases, and understanding that Kyle has is pretty unbelievable. He told me the other day "his freedom hurt." I was a little confused so I looked at him puzzled and he pointed to his frenum in the inside of his lip.

Tv does not interest Kyle in the least, he will watch maybe a half an hour total in a week. But you put any kind of construction, building, installing in front of him and Kyle will sit quietly for hours just watching. Recently we had a dishwasher installed Kyle sat there for over an hour not saying a word but taking it all in. Afterwards Kyle used phrases and details he heard and explained what happened in a fairly logical way.

Kyle and any one else with a catagory placed on them defy the boxes we try and put them in. Yes there may be limitations but there are so many other aspects that can overlooked and not appriciated.

As Kyle continues to develop a person his likes, dislikes, natural desires, and talents continue to emerge. Like anyone else we meet it may take a little digging and listening to see the many different facets of each person. But they are there, we just have to be willing to look for it.