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.

Being content and peaceful

There are moments that are tougher than others. One day last week there was a moment that hit me, and it was something simple but it brought reality and dispair together into an uncomfortable moment.

It was the tread of Kyle's shoes. They were unused and in perfect condition. There is no way that any boys shoes should have perfect tread on their shoes within 5 minutes of getting them. As we have seen Kyle's mobility continue to diminish, he doesn't walk anymore. He has gotten very good at using his wheelchair and can wheel himself around the house with great ease but that isn't much solice.

How does one find contentment and peace in the midst of this? Sometimes it isn't the big things that are tough but the little things, the small reminders.

As hard as it is for us and physically on Kyle. He never stops or complains. This week we had a hardwood floor laid (which is a huge help for Kyle in his wheelchair). Kyle insisted on being in the middle of it. Our friend Dustin who was working on the floor, gave Kyle the gun to nail the floor in and so for almost half an hour Kyle with his limited strength helped nail the floor down.

Kyle makes it much easier to feel contented and peaceful because he still enjoys himself,and doesn't allow his disability to ruin his life.

It is easy for me to focus on the difficult, but that isn't the way Kyle sees life or the world. If it is tough he just grits his teeth and does it anyway.

We have so many reminders of love from those who care about us and the special moments Kyle has, our new hardwood floor is the latest reminder.

Not enough cool whip containers

Cool whip containers, why would one keep them? Sure they make a great alternative to tupperware, but how many is too many? Is there a possibility that there wouldn't be some at the store next time we visited?

When my grandparents went into a nursing home, there were hundreds of cool whip containers found at their house. Knowing that they grew up through the great depression and having an appriciation for saving money and resources it isn't too difficult to see the desire and the need to save items like cool whip containers.

It is easy to observe and see the characteristics of a hoarder in the term of physical items, and it is even easy to understand the mentality of why people would hoard if the worry was not having enough.

What about the other aspects of life that people hoard or worry there isn't going to be enough? I think about this alot with people with terminal diagnosis'.

What if there isn't enough time with my loved one? Does this knowledge give freedom or paralysis? Does it help me value each day or does it weigh me down to the point of living each day in dread?

The same is true with the emotional aspect, if I give myself fully to being emotionally attached am I going to have enough emotional energy for tomorrow? Am I going to be hurt, disappointed, and empty at the end of the day or life of my child?

Worry, the unknown, fear, disspointment, unfullied expectations, drive many of us to do a lot of destructive things in our lives. I can only imagine this being part of why the divorce rate of parents of special need children is somewhere around 80%.

The engagement factor is such a struggle for fathers of special needs children. It may not be intentional, it may be not knowing how or what but many are very disengaged. I find it easy to drift into this area without being intentional.

It is easy to diagnose a hoarder of stuff, it is much more difficult to see those who hoard their emotions.

Each day it is a choice not to hoard my emotions.

Stuff- what do we do with it?

A new "hobby" has arisen in our family. Well maybe not everyone in the family embraces it, but most of us are enjoying buying abondoned storage units.
About 4 years ago I went to my first storage unit auction and there were about 5 people at the auction, but with the popularity of the television shows the crowds at most auctions are from 50-100 people.

People rent storage units for all different reasons, but one of the main ones is there is a lack of space in their current living quarters. The garage, shed, attic, and every closet is full. What do we do with all this other stuff?

Most of the items we have found have been in these units for years. People have lived without this stuff for years if not decades. Work went into moving all of these items into these units. There was a conscious effort to keep these items (until they stopped paying).

Why in general do we love "stuff" so much? Toys for adults and kids both have a very short life span.

Yesterday was the first day Kyle, Ellyse, and Ayden attended an auction with me.It was uneventful until the unit came up for auction with a vintage pacman arcade game.

On Wednesday nights Kyle and I watch storage wars and he loves to immitate the different bidders. He raises one hand in the air and says in a long slow draw "Yuuuup."

So he understood to some degree what it meant to bid on something, so in front of us is a unit up for auction with this vintage game in it. I am standing with Kyle and all of a sudden his hand goes in the air and a "yuup" comes from his mouth. Kyle had bidded on the unit without any prompting. He only did it once before we moved him away and didn't let him win.

Thoughout the remainder of the day Kyle kept explaining that he wanted the Pacman arcade game in his room.

Stuff- it can give us comfort, it can lesson pain, it can bring us entertainment. The Pacman game may last longer than the average toy, but soon the novelty will wear off and we'll have a 500 pound eyesore that we will have to move.

Our family struggles with stuff, and sometimes due to Kyle's condition we want to buy him things. But that isn't the answer.

One day if we aren't careful we'll have a storage unit or 2 or 5.

In the end stuff doesn't make us happy.

Reality

Escape- hiding from pain- having a semblence of normality- trying to be positive. Reality hits some days and bring things to a screeching halt. The disease hits hard and brings a heavy blow. It is much like an earthquake temor, it shakes everything, it may not do damage this time but one day the big one will come. It is in the back of our minds.

We had some harsh reminders this week. As we have begun to get to know others in the Duchenne community we have seen the progression of others older than Kyle. Then came word that one of the co-writers of the book project I took part in- son died. He was only 14, dmd had struck again. The dose of reality hit us in the face.

Yesterday morning as Jill prepared to go to a meeting at Kyle's school she knew it was going to be difficult. This meeting wasn't about his behavior rather it was about his failing physical health. Discouraged I recieved numerous text from Jill- the school wants Kyle to have velcrow flies on each of pants, they want him to have a "pee can" type bottle. The reality of taking Kyle into the bathroom is a tough and difficult process. No one wants to hurt him or have anyone else get hurt.

We are in the process of making a decision about whether to keep Kyle on his steriod or take him off it ue to his lack of walking. A couple of weeks ago Jill observed that watching someone stop walking is the opposite of someone beginning to walk. From stable to shaky to using a wall to walking around the furniture.

Doses of reality are cold and sharp but we go on. The tremor has shaken but it didn't knock us down.

Pray for us as we live in this new stage of duchenne.

Rythms of Life

Words like peace, serenity, quietness, slow, and restful aren't words to describe many of our lives. Those words are replaced with frantic pace, rushed, loud, busy, on the go. This is especially true with kids.

We as a family have been forced to slow down, physically we can't go at a hurried pace. As much as we would want to be involved in many more activities, relationships, and other forms of busyness we can't.

I have recently been reading about the concept of Sabbath rest. The idea that God created the world in six days and on the seven day rested. That is a novel idea, an idea of letting the busyness of life go for a day and spend in a relaxed mode. Even in the context of a day I have had to the ask the question when do I recharge?

In the life of a parent of a special needs child rest is a concept hoped for yet not realized most of the time. What we as a family have found is slowing down to a Kyle's pace. Going to the store or out to eat takes much longer now due to unloading and loading the wheelchair. We aren't nearly as "productive" with our time as we once were. But things go much more smoothly when we realize that we move slower and are patient through the process.

Jill and I have joked many times older people can only do one thing a day. I.E. her gandparents would plan their day around going to the dentist, or going out to eat for lunch. But those wouldn't happen in the same day.

I guess we have arrived at that stage of life earlier in life. As we have begun to patiently and slowly move in life the results have become more peaceful and restful.

The different issues of our lives haven't changed. We still have as many worries, and problems as we did before but our attitudes have changed. Sitting at home all day on Saturday is not unproductive. It isn't regretful if we really don't have a plan other than relaxing, and enjoying each other.

As we continue to understand our rythms of life it has brought us much peace and the frustration level has dissapated.

Inspiration from the weak

The dolphin couldn't jump higher than other dolphins, it could talk as a human, in most ways it could only do normal dolphin activities. Yet this one was an inspiration, one that hollywood made a story about. I am talking about Winter the dolphin with the artificial tale.

Why was that story so important? What drew many people in, why is there a successful website to watch this dolphin?

There are those who are great performers in life, those with natural talent and abilities who can do things the majority of us can't do. The athletes, the talented leaders, artists in every field of work. In general we respect these people and if they are extremely special we remember their names and their story. But very infrequently are we are inspired by these people.

Inspiration comes from the unlikely stories, the greater the tragedies the greater the inspiration. A girl surfer who had her arm bitten off by a shark. I suspect not many can name any other good young surfers. Yet we remember this one story.

What are the stories and people that inspire us?

Last Thursday night while Kyle was a "football player" for a night I thought through how many "normal" kids play football on a regular basis. A good percentage of kids play at least some level in their lifetime. It really isn't a big deal, it is normal. Yet it was a very big deal when Kyle was presented with his football jersey. He will never earn one with his play, he will never be able to do what many take for granted, yet for that one moment in time he was a small part of this team.

I was curious/concerned how Kyle would be recieved by the team. A bunch of high school boys, athletes. How would they view Kyle? In the end I had nothing to worry about, by the time we left Kyle had 50 or so new friends.

He shook hands and fist pumped more than any other time in his life. He was able to be one of them in a strange way for an evening. Laughing, joking and being on the field. It was small and in many ways insignificant time spent with these guys.

After Kyle got comfortable he started telling these players, that when he got older he was going to play football. A couple of the bigger lineman were standing with him when he said this. I didn't know how they would respond. I was uncomfortable so I didn't know how they would react. But in gentleness and sincerity they affirmed Kyle and said something to the effect of we hope so. They leaned over and told Jill we are so greatful we have this ability that we take for granted.

Kyle isn't like them and probably never will be physically, but that doesn't mean he doesn't have anything to offer. Kyle is very simple minded and doesn't even realize that he is giving off hope, love, and shows of determination of living life, even though the simple things in life are difficult.

The pictures say it all

Pictures from Kyle's night shooting a promo against duchenne with the Valpo football team.

Disabilities show God's glory

Since the day Kyle was diagnosed I have been on a quest to understand, I have wanted to understand through a lense of faith. I have wanted to put words in God's mouth, I have wanted to believe those who have said God is physically going to heal Kyle.
I don't think I have a total grasp on the theology of disabilities, maybe a start or maybe a few concepts that I semi-understand. But it plagues my mind, and thoughts. My mind tries to grasp who God is, why He would allow someone to be born with disabilities, and my own faith.

As I think about the theology of disabilities. I start with the premise that God is sovereign. God is all knowing, all powerful, and many other attributes. (a great blog to learn more about the attributes of God is http://25anchors.wordpress.com ). If God is all of these things why does he allow disabilities? is it a product of sin and mankind? Did God intend every human to be "perfect" or normal? When a person with disabilities dies what are they like in heaven? Are they "normal"? I am not sure I was right in some of my previous thinking. I think the Bible is clear there won't be pain, crying, death (rev 21:3-4). But to think that someone with a disability does not reflect the glory of God is wrong. Does sin cause disability?
John 9:1-4 brings up so many of these issues. The disciples much like us think disbility is caused by sin. Jesus answer God's works might be revealed in him. Exodus 4:11 The LORD said to him, "Who gave man his mouth? Who makes him deaf or mute? Who gives him sight or makes him blind? Is it not I, the LORD?

What does that say about God- how can a God make someone that isn't perfect? Maybe perfect looks different to God than us.

1 Corinthians 1:27- But God chose the foolish things of the world to shame the wise; God chose the weak things of the world to shame the strong.

I can't give an answer or build a theology that is 100% correct there are so many things I don't understand, but yet I believe God fearfully and carefully made individuals with disabilities. They bring God glory in ways that many of us can't. I am not going to put words in God's mouth nor am I going to try and make the Bible something I want it to say. If those with deformities bring glory to God why do we miss it? How have so many societies banished those with special needs to the side, how have so many churches viewed those with special needs as a problem and not as someone made in the image of God? I can't answer any of those questions other than for myself.

What happens on the flip side when those can see God through disabilities? What happens when God's glory is shown? Maybe it is more than we realize but our eyes are shut, or we are too busy avoiding that we miss it?

God please let us see all of the people you created through your eyes and your lens and let us see your glory through each person.

The one thing that Duchenne can't effect

This is going to be a non-medical voice. I am not the expert, nor do I understand how this works medically, I just understand the practical implications.

To give a brief recap of duchenne it breaks down the muscle, starting with the ankles, wrist and moving inward. One doctor described it as each of us has a covering over our muscles and Kyles (and everyone else with duchenne) covering is like swiss cheese and the dystrophin seeps out. The reason this disease is deadly is because it eventually attacks the heart.

Jill is the medical wizard in our family, since the beginning of Kyle's diagnosis she has read, studied, and engaged many experts on his disease. From a medical standpoint she can explain and understand the working of this disease and the human body quite well. She has read numerous stories of families with duchenne's. I have a difficult time reading these stories because I know the outcome. Recently there was a man in Ohio with duchenne's who just celebrated his 40th birthday. Some experts believe that he has lived the longest with duchenne's. So the prognosis of this disease is not good.

With all the ravanging of the body duchenne's does it doesn't affect one thing physically. It doesn't effect the facial muscles. It attacks and destroy's every muscule from the neck down. I didn't know this until one day Jill was reading and told me. It may not seem significant, but there is one important thing that you can do with the facial muscles- SMILE. Duchenne's is destroying Kyle's body, we can see it on a daily basis. He wasn't what he was 6 months ago, but with all of that. This disease can't take the smile of his face, both literally and figuratively. We believe God has blessed us with this gift, and it may be small in the big scheme of life, but this a blessing we get each day and for that we are thankful.

a dream coming true- in a different way

I am a romantic and an idealist, I tend to have unrealistic expectations. Hopefully as I have gotten older this has mellowed, but it has led to all sorts of different issues in marriage, jobs, relationships, and life in general.
With my kids it was the same thing, before Kyle was born, my thoughts and dreams were unrealistic. The first thing we did when he was born was watch a football game together. The thoughts and ideas of this great sports star rolled through my mind. Sports had played such a huge part of my life (and still does to some degree)of course it would play a big part of my kids lives.
Kyle playing football would be a normal part of life, I could imagine it that day sitting in the hospital. He would be ten times the athlete I was. He would take after his moms side and be the football player his grandfather was, after all he recieved a scholarship from the Citadel. So it wasn't that unrealistic for him to be really good.
As life progressed I came to realization that this would never happen. I would never see Kyle in a football uniform, on a field.
But that isn't true. On October 14th Kyle is going to be in a jersey on a football field. Duchenne has become the main cause/disease that college and high school football coaches are fighting. Schools all over the country are bringing children with DMD onto the fields with the teams.
Through a extremely motivated person, Valpo high school is going to be honoring Kyle on October 14th. He will be involved in the coin flip, and will be wearing a valpo high football jersey with his name on the back, and sitting on the sideline. They may even do a pep rally at his school.

This dream of Kyle being on a football field is going to happen. No, this is nothing like I would have dreamed, or imagined it to have happened. I am not going to give up on my romantic, ideal thinking. But I am going to stop crafting how the hopes and dreams of life will look like, because the blessings in our life tend to look awhole lot different than what I would have envisioned.

Giving to others

Being part of a community means both giving when others are in need and accepting help from others. It seems that many people are better at one or the other and whether we struggle with accepting help from others or just taking and draining from the community without giving anything back. Neither one of those are extremely healthy.

I personally struggle with taking from other people, I hate getting gifts. I have no idea how to respond. It is much easier to give to others.

The triathlon challenge Kyle was a part of was both for us as a family. It helped us greatly, we were able to make our house Kyle "proofed." We are getting very close to being done. It helped us out immensely. We as a family didn't just want it to be about us though. We wanted to give some of the money that was raised to others who were in a similiar situation as us.

We decided on giving to camp scholarships. We could have given to research or medical supplies, but we decided on camp scholarships. This may have the littlest value in the big picture scope of life. But we want to help individuals, individuals who struggle throughout the year. Where the families and the individuals effected by dmd can take a break from the disease. After last year spending time at Joni and Friends family camp we realized the importance of this. To be at a place where you are the normal one, where the world caters to the special needs that an individual has and not trying to fit into a world that wasn't made for the us.

Never having experienced that before we didn't realize what we were missing, and we thought many other children with dmd could experience a week of happiness and peace.

We all need both those that give to us and an opportunity to give of ourselves. Even those with special needs or don't feel they have much to give need the opportunities to give. Kyle may not be able to give the way many others can but he is a vital part of both our small community and bigger community. It takes work and creativity but Kyle and others like him can give and we need to continue to give them the opportunities to bless others.

The climb of life

There is one time during the year that I miss New England, and that is the fall. From playing football, soccer, drinking apple cider, my grandmothers donuts, and all sorts of other great memories flood my mind when I think of fall as a child.

One other semi tradition as a kid was climbing Mount Monadnock in the fall. Climbing mountains is one of the activities we don't have in the midwest. The first time I remember climbing it, was with a group from our church. The group was made of people of all ages.

As a little rugrat with a lot of energy my brother and I raced up the mountain. There was about four of us that went as fast as we could and beat the others from our group up the mountain by a large amount of time. As we were nearing the top it was about lunch time. We realized then that we didn't have our lunch with us, those in the back had been carrying all the food in their backpacks. So we had to sit and wait for awhile and wait for our lunch.

Everytime I climbed the mountain there was always a group that went up quickly, some that slowly but steadily climbed, some that meandered, and some that never made it to the top due to lack of physical fitness or being injured.

As I reminisce about these trips, I think about hiking up a mountain as a metaphor for life.

Recently I was speaking to a friend whose family went through a tragedy a few months prior. I asked him how he was doing in general? His response was to the effect of some days are ok, but most of the time the pain is just as strong as the day the tragedy occured.

Long term pain, or problems that can't be solved provide a dilema for most of us. The simple easy climb of life has changed, the energy of climbing has waned and the pace has slowed or even stopped.

The story for many of us doesn't change. How is Kyle? The question is frequently asked, what is our response? How are you guys doing? Again the response doesn't change. It is a long slow climb. The energy isn't what it use to be both physically and mentally.

There are many who start the climb of life out together but it gets too slow. It gets too tedious, we stop too many times, we may even sit in the same spot for a good while.

As others are able to leap big rocks with a single bound, the slight incline provides challenges for those with a limp. It doesn't mean we have quit or given up, it just means it takes us longer.

The limps and baggage that comes along with many of our journeys have changed us. But we continue.

It is different going from the one who raced up the hill to the one in the back that others are waiting for. Life has changed, but even as those in the back brought us lunch, hopefully as I get older and wiser I and others who have experienced difficulties in life can bring nurishment to those who may experience pain in the future.

Saving our Sons and Daughters 2 book project

We are working on a book project with Misty Vanderweele on a book project called Saving our Sons and Daughters 2. In this book there is going to be 40-50 writers who have been effected by Duchenne Muscular Dystrophy. It is going to be from the perspective or mom's, dad's children, and adults who have been effected by the disease.
Each of the participants are writing short stories or poems describing how the disease has effected us.
The book will be coming out around Valentine's day 2012.
We have been working on a rough draft and almost have it done. I am horrible at keeping secrets so it is going to take all my energy from not just posting it on here next week.
Misty has written two other books related to her journey as a mother and advocate for DMD. In your face Muscular Dystrophy All pain all glory and Saving our sons one story at a time.

Living vs. breathing

Kyle has two sayings that he starts many sentences with- "when I get older I'll.....or I wish we could......
What follows these two sentences can be the mundane such as cross the street. As Kyle's brother and sister continue to gain independence and roam through our neighborhood they have been allowed to cross the street and that is a big deal, so as we sat outside yesterday, Kyle told me when he got older he would cross the street.

Then there are the times when Kyle shares his hopes and dreams. A few weeks ago we watched Soul Surfer afterwards Kyle exclaimed I wish I could surf.

We hear these kind of comments on a daily basis, and on the surface these can seem heart breaking, discouraging, and depressing.

But is it really? When one speaks of hope, and the possibilities for the future is this really discouraging?

Yes some of Kyle's hopes and dreams are going to be difficult and we don't plan on surfing anytime soon, but Kyle doesn't believe he can't surf. He saw a girl with one arm surf so why can't he?

One day recently he told me he wanted to sky dive much to the chagrin of both his mom and grandmother.

John 10:10 "I have come to give you life and life to the fullest." -Jesus

There is a huge difference between breathing and living. This isn't just in the context of adventure and skydiving but in the way we view all aspects of life.

It is very easy to become scared of death with having a child with DMD. It is very easy to become protecting of existing, but is that living?

Kyle wants to live, and it may not be extremely complex but he has the inate desire to experience life.

The positive side of having a child with a life ending disease, is we can take adventage of each day. We can't and shouldn't wait.

Psalm 118:24- This is the day the Lord has made let us rejoice and be glad in it.

We chose to be glad and thankful for this sacred and special day today. We may not go surfing or sky diving, but we will enjoy the life God has given to Kyle.

Life decisions

There isn't a clear path, nothing has cured the problem. There isn't a road that leads to health or a long healthy life. So what do we do?
Those are some of the struggles/questions that we have as we walk down the DMD path. Since nothing has had great success a lot of what we are advised to do is experimental. There isn't a sure thing,there isn't one magic bullet that will solve the problem.
Medical decisions that will effect Kyle's life are pretty intense decisions. We thought, prayed, and researched the steroid he has been on for the last 5 years. It isn't FDA approved, we get it from England. We knew we didn't want Kyle on prednisone. Although this steroid works great in the short term, it will kill him long term. Currently Deflazacort (which Kyle is currently on) does not have some of the horrible side affects. But it isn't without risk, long term use will eventually effect him negatively. But short term it allowed him to walk and move better for longer.
Each medical decision is difficult and painful. It is not decisions that we look forward to, but decisions that will have life implications on Kyle.
Yesterday Jill had lunch with a mom with a boy with DMD, he is currently 18. Two years ago they had a decision to make, he could go on a ventilator or he could choose to die.
Jill and I have begun to dialogue about this, a decision we don't want to think about or even talk about this but this has to be decided.
It probably isn't any different talking about a loved one in their 80s having the same decision to be made but it feels different when talking about our child who will be in his late teens.
It is much easer to not talk about these type of things, but this is part of reality for us and for many other people of terminally ill children.

A special day three years ago- a determined runner

Tomorrow as Kyle and I run our first race together, I was thinking back to the popcorn festivities three years ago. It was the first time Kyle ran in this event. Here is what I wrote three years ago:

This past weekend Valparaiso celebrated it's most famous alumni Orville Redenbacker with it's popcorn festival. Like many other small Indiana town festivals it mixes some part of it's heritage. Valpraiso not only has a parade, venders, food, a balloon launch but it also has a 5 mile race and it's marquee event called the lil' kernal race.
From general estimates anywhere from 300-500 kids ages 2-9 race down Valparaiso mainstreet in age groups and heats of 20-25.The 7-9 race 300 yards, 4-6 200 yards and then 2-3 100 yards. It is a run in front of family,friends, valpoites, and those who wanted to stake their claims out for the parade.
Ayden had run in the this event once before, we had held out Kyle and Ellyse due to not knowing how they would handle it. This year we decided to sign them all up to run. Although Kyle is 8 we thought it best if he just ran the 200 yards with Ellyse. We had no idea how he would do, we thought worse case scenerio he would trip, fall, and be bloody the rest of the day.
When it was the 6 year olds time to shine, Jill pushed through the crowds to get Ellyse and Kyle into position. They reached the starting line with every other parent in northwest indiana who thought their child is going to be the next Usain Bolt. There were racer helpers who would escort the kids to the finish line and Jill asked one of them to occompany Kyle. The race started out and all the kids darted down the road. All the kids that is but Kyle. He tried to run as fast as his legs would take him, but he doesn't move too well because of the muscle Dystrophy. Soon it was very evident that this was going to take a while. When he was a quarter of the way through the course Ellyse and the rest of the kids finished. Kyle was very determined to finish, although his legs are not strong his will made up for it. As he labored the remaining 150 yards a couple of other helpers joined in encouraging him to finish. I thnk there was very little doubt in Kyle's mind that he couldn't finish. As he neared the finishing line Jill's uncle told the announcer that the little boy's name on the course was Kyle. He began cheering on the loudspeaker for Kyle and immediately the throungs of people gathered began to follow suit.
As they were cheering his name a huge smile came across Kyle's face and with all the energy he could muster he ran the remaining 25 yards as fast as his legs would carry him.

Too much for one person

Maybe for a better man it can be done by one person, but for me it is going to be a team effort.
Since the middle of July I have run almost every night. I had every intentions of starting in March, then in April, May quickly passed, June we were busy, and then finally July became the deadline. Last year I had prepared to run the Popcorn race and my neighbor accompanied me many nights as we ran our neighborhood. I should never have stopped, but running alone did nothing for me, and I had accomplished my goal to run the 5 mile race in under 50 minutes. I had run in 48 something, not fast by any stretch of the imagination but I had finished what I set out to accomplish.
This year I thought I could do the same, and I probably can.
But Kyle wanted to run it and be pushed through the race. So after securing a running stroller him and I have ran quite a few time through the 1.4 miles of safe neighborhood roads. 1.4 miles is not the same as 5 miles.
Last weekend I ran the popcorn race course by myself and realized this is too much of a stretch for me to run this with Kyle. I may finish by myself but pushing 150 pounds up a couple of pretty big hills (Indiana style) would not end pleasantly. We may finish but it would be well behind the other competitors and be pretty rough.
What has emerged as a much better experience is for a group of people pushing Kyle for a mile (or less each). Who would want to do that? Who would want to take on a physical burden that I wish I could do myself? It was actually much easier to find these people than I thought.
This idea of running with Kyle could be a metaphor for the way we view life with a special needs child. I wish I could do more, I wish I didn't have to ask for help. But realistically I need people around more than I would readily admit or even want.
I am sure there are many other more strong and determined people who could run 5 miles pushing a young man in a stroller, it isn't me. Yet. I wish I not only had the physical strength but also the emotional strength to deal with everything on a daily basis.
The gratitude that I have for those who are running and pushing with us on the day of the race is great but it is just a small glimpse into the community of people that surrounds us and gives us tangible help on a daily basis.
Of course our faith is such a huge part of our lives, and something that brings us strength on a daily basis. Right behind that is the strength of a community of friends and family.
Pride and the thought of being strong enough to do this on our own is being thrown out the window. Yes there are a lot of things that we will deal with on our own and we never want to become dependent on others for our needs, but an idea of being part of a community of people who love, care, and are interdependent is what we are seeing happen.
This race is just one small aspect into what it has been like for us to have others on this journey with us.
Maybe next year I will be able to run with Kyle alone and maybe even do a half marathon with him, but right now running with a team of people is needed because it is too much for this person.

Productivity

"So what have you been doing?" is a question I get asked quite a bit. I have been known for doing many different projects and being involved in all sorts of different ministries, ventures, and crazy ideas.
My answer use to begin with telling some off the wall story of something funny or moving that had happened.
As I have continued to evaluate goals and values in my life, many of those ventures and things I have been involved in have went away. Unfortunately there isn't time to do everything.
As Kyle has become less mobile the amount of time and energy I have for other things has diminished.
This has been a struggle, a changing of focus. This isn't a bad thing but a change, and change is always difficult.
Productivity has started to mean something different than in the past. If I wasn't busy,creating, or meeting people my day I deemed was not productive.
The grandiour ideas of doing something worthwhile, meaningful, and helpful to mankind was the focus. The only thing that has changed is the idea of something big.
As my faith is centered around acting like Jesus, being full of compassion, love, and grace I believe I still do that but it has begun to look very different.
It involves taking Kyle to bathroom quite a few times a day, it involves lifting him and moving him to where he needs to go next. It means getting up a couple times a night to get him water, or lifting his leg which has fallen off of the bed.
The idea of productivity is not the same. It has taken much prayer, to be at peace with this.
Being a caregiver of a special needs child is a ministry and a gift to one person. It is acting like Christ to not the masses but to one.
This has been a difficult change in my mindset as being a big picture thinker and wanting to do bigger things.
But if I am not going to care for Kyle who is? Making this conscious choice has been tough and cutting back on so many other things in life has been hard. It has helped me make small goals, and enjoy small blessings each day.
I still struggle with finding self worth from what I do and accomplish, but as I continue to find peace with where God has placed me, I continue to know that productivity does not always mean doing big things.

Being Challenged

As Jill and I nursed our aches, pains,and blisters while we waited for the ibuprofen kicked in we asked each other what changed? Last night as we layed on our couch not being able to move, we asked what changed in our lives to think taking Kyle and Ayden on a 12 mile canoe trip was a good idea? What changed in our thinking to go from survival mode to actively engaging Kyle in life?

Being tired is a part of parenting and even more so with parenting a special needs parent, but is that an excuse? For me it was quite a bit, it was very easy to see Kyle and what he couldn't do not what we could do. It was easy to see and think about all the work that would go into any activity outside of the house. It was easy to come up with reasons and excuses why we couldn't do something.

One of the dangers of special needs parents, is it is easy to fall into this mindset and not get out of it. We fell into the mindset but we were pulled out of this by the people around us.

We have been on the recieving end of gifts and giving all summer. While the physical help has been such a huge help, and the effects will be long lasting. The emotional support and investment will also have positive implications on our family.

Being pushed is not something we always relish, we don't like it when people question the way we do things, or offer us a different path.

As I try to answer the question of what changed for us this summer, the answer lies around the answer of people challenging us in many different ways. I was personally challanged about going to Joni and Friends Camp. The rest of our family bought in, but I was so skeptical. It took two or three people to persist in getting us there.

We have been pushed by seeing and observing others. We weren't challenged by words from families we encountered at Joni and friends but just by observing their lives. Paul Summer has also inspired us in the way we look at adventure, fitness, and physical life style. He has never said a word but by his lifestyle and his determination and committment to physical fitness it has pushed our unhealthy lifestyle in a different direction.

Kyle and I run almost every night with a jogger stoller. It is not only a great physical workout for me (I am down 15 pounds) but a time Kyle enjoys each night getting out of the house. It was Paul's inspiration that started us with this habit.

Being a special needs family has a feeling of ackwardness when it comes to social situations, I have many times opted out of doing something due to the stress and the physical toll that comes with it. We as a family have begun to embrace these more and we have seen others respond positively it has been such an encouragement to us. We have friends that have bent over backwards for us, and even though their house isn't Kyle friendly they have made it such a joy and pleasure to spend time with them that it eases the physical toll. They don't take no for an answer.(Thank you Zenon and Monique).

Although ramps, and house changes will effect us for quite some time, the relationships, and the challenges that have come from those have also pushed us in ways that will effect us positively for the rest of our lives.

A Summer of no regrets

Next week at this time, my kids will be in school preparing for another year of learning. They will have left behind the summer of moving, adventure, and fun and moved into the new grade level.

For the last few years our lives have been in flux and have not been settled. It was unknown what was going to happen and preparing for many different possibilities.

This summer was different the possibilities became realities. It wasn't about asking the question of what if, it was the the what if's becoming memories.

Going to Joni and Friends camp was something I had put off for the last 3 years. I was out voted this year and we went as a family. The memories and the relationships that came out of this experience will stay with us throughout the year.

The triathlon has brought us many new friends, possibilities, and physical help with our home. This experience was such a huge part of the summer and opened up our eyes and minds to the possibilities Kyle can do.

Kyle throwing out the first pitch at the minor league baseball game was also a memorable moment. This was the first game we had ever been to as a family.

As we look back on this summer we will remember the moments that we spent together, the work that was done on our house. The people who supported us in so many different ways and the joy of being together. All of this before our first family canoe trip.

"Friends go in each others rooms"

One day last summer we were leaving our house, and two of the neighbor boys were sitting on the curb. They were laughing and having a good time. Kyle who was in the back of the van looked over at them and said "they are best friends." Then with a sigh he said "I wish I had a best friend."

Having a special needs child comes with different hurdles and problems throughout childhood. One of the issues that we have encountered is the issue of friendship with Kyle. One of my biggest fears was what if he never has any friends? What if the only people who know him are his family? Maybe this is the way it will be and maybe that is ok.

Our other two children have friends and have "play dates" quite a bit. Kyle has asked many times for a play date, and he gets very sad when he sees his brother and sister go to friends houses or friends come to our house.

I didn't know if there was a solution to this problem, I wasn't even sure if this was a problem. If it was a problem it was only a small one, in my mind. But it has really bothered Kyle for the past couple of years.

He has cousins who he loves to play with, and enough family to keep him from being lonely.

Then the other day out of the blue, Kyle announced he had a best friend. This was a big burden lifted from his shoulders, it was evident that he had been thinking about this for some time.

I was a little suprised when he announced this best friend. He told Jill and I the friends name, and it was a boy who had spent some time with Kyle and probably didn't think the same way, but Kyle was so excited. He told us he wanted to invite him to his birthday, and wanted to have sleepovers.
I asked him what best friends do his answer was "friends go into each others rooms."

Kyle is very protective of his room and his stuff. So this is somewhat of an important revelation that Kyle wants to let someone into his room to play with his toys.

I believe it is more than just the physical aspect of allowing someone into his room, Kyle wants "friends" to be in his life. This inate desire for friendship and relationship is within all of us.

Kyle doesn't always know how to explain or communicate but there is the same desires and needs in his life as there are in all of us.

The hard part for us has been how do we help fill those needs and desires? We focus so much on the physical needs that we sometimes neglect the emotional, and spiritual needs.

We are learning and enjoying the journey as Kyle enters friendships.

Now we are a little worried when the other day Kyle mentioned a girl that may be a friend, when I asked him what he thought about her- he told me "I love her." Now that is a totally different subject.

In a world of can't there is an amazing can

There are many can'ts in Kyle's life. There are many limitations on his physical ability. But there are some things that Kyle is amazing at and one is his memory.
I have a tendency to misplace or lose things. When this happens, Kyle is the first person I ask. Kyle can tell me without hesitation where the last place he saw it was.
Kyle remembers most things he hears, he reminds us daily of the promises and the words we said. He reminds us when punishment for his brother and sister was doled out. He reminds us when there is a party, outing, or some other fun thing was planned. Actually if the idea ever came up Kyle puts it into the fact catagory. We have to be real careful not to talk about ideas in front of him. He has spread word to the rest of the family about plans that were only ideas.

The other day I wasn't wearing a seat belt driving and I was stopped and issued a ticket by a police officer. Kyle was the only one in the car with me and I told him lets keep this between you and I. He agreed and it hadn't been brought up throughout the day. The first thing he said to Jill when he saw here 6 hours later was "dad was naughty and was arrested by the police." The hope of him forgetting wasn't going to happen.

He reminds me of when I was a boy I ate playdough (a story I had told him one night a few years ago.)

He brings up special moments of conversations and moments that have slipped my mind. Two nights ago we were laying on his bed talking,and he looked at me and put his finger in my mouth and yelled "fishhook." We hadn't done that form of affection in about 3 years. Kyle was reminding me of moments that have been special to him.

It is easy for us to think of the can'ts in Kyle's life, but this is a big can. Although there are not many secrets in our house, it is this part of Kyle that brings us together as a family. We have laughed so many times from stories that Kyle has brought back to our memory.

No more crying there

In our new house Jill and my bedroom is downstairs and Kyle's is on the main floor. We have a baby monitor to Kyle's room and early in the morning we hear all sorts of talking, thinking, sounds, and who knows what else from him. We have been very suprised(in a good way) at some of the things he has said and he has serenated us some mornings with songs he has learned at camp and at church.

After I wrote the last post about Kyle's interaction with God. There was a moment that I had forgotten until I was mowing the lawn later on in the day.

One day we were laying in bed and Kyle had woken up and had said "wake up and get me." After he got the hint that we weren't ready to get up, he started saying nonsensical stuff then he started singing a song.

I don't know where he learned or heard the song, but it was a worship song popularized in the 1960s-70s. It is called "Soon and very soon." There are a couple verses to the song, and the premise of the song is what the afterlife will be like in heaven.

As we lay in bed that morning, Kyle started sing this song. He didn't know all the words but he knew one line. "no more crying there we are going to see the king."

He sang that over and over. He later told us that was his favorite song.

I have no idea if he knows what the song means, or the implications of it are. But to us there is great truth to the song.

No more crying, no more pain no more heartache. No more struggle for Kyle to move, to do the simple things in life.

This hope is what we (as well as many other special needs parents) cling to on a daily basis.

"How does Kyle interact with God?"

"How does Kyle interact with God?" was a question I was asked one day. To be honest it was the first time I had thought about it.

I knew how important faith had been in our Jill and my lives. But how important was/is faith important in Kyle's life? Could it be quantified, or measured in any way?

Faith in the western context is many times measured by knowledge, and if this is all we have to go on with Kyle- his faith is shallow if existent at all. The quantifying ideas of scripture memorization and basic Bible facts can not be a fair way of assessing of what is going on in Kyle's ife.

I personally believe that God has created each and every person on this earth and He desires to interact with each of us. I don't think that mental capacity hinders God.

Kyle doesn't know all the implications of his disease. He doesn't understand and sometimes says things like "when I get older I will be able to run or play baseball."

I tend to complicate faith and over analyze it. But as Jesus said in Mark 15:10 Truly I tell you, anyone who will not receive the kingdom of God like a little child will never enter it.

Simplicity and faith is what I hear and see in Kyle. He isn't jaded about life the way I am. This is the way he approaches relationships and the way he talks about God.

He told us one day Jesus was going to heal him. I don't know where he heard that or even if he understand what that means. But he was pretty sure of it.

He has said things from time to time about heaven and going there. It is very easy to talk about our families faith and from our perspective, but it is a very different thought when putting ourself in Kyle's shoes.

I don't know if I have a good answer to the question of how Kyle interacts with God. But I am pretty certain that he does. I also know that I am learning more about God by watching and listening to the simple way Kyle lives his life.

Families of Special Needs Primer

As we continue to get comfortable in our special needs family skin, we realize that people are as uncomfortable with this as we have been from time to time. It is difficult to know what to say or not say sometimes. We thought we would do a brief primer that could be helpful, this is from our own experience.

-Kyle is a person.
This is obvious, but what we mean by this is he is not just defined by his disability. Of course his disease effects every part of his life but that isn't his essence. One of my worries over the past 9 years is no one would get to know Kyle as a person.
That has changed over the last few months with his notoriaty with his triathlon. I believe before that there wasn't much common ground between Kyle and others. People didn't know what to say or how to talk to him.
Getting to know Kyle or other disabled people is more difficult than getting to know the average person, but there is still a soul who has hopes, dreams, desires, and humor that shines through when given the chance.

-Questions aren't offensive cliche comments are.
Asking about Kyle isn't offensive at all. Asking questions about why he is in a wheelchair or about his disease shows us as the family that you are interested and care about him as a person.
The flipside of that when a stranger or aquantance makes a cliched statement such as "God won't give you more than you can handle." Those kind of comments are very offensive and extremely hurtful. It shows us that you don't care at all about our situation and are only concerned in fixing a problem that may or not be there.

-This isn't a curse.
Yes it is hard, yes this isn't the life that we would have chosen. But it isn't a curse. Sure we may be envious (at times) of the life of "normal" families who have the superkids of good grades and are good athletes, but in the end we wouldn't trade our lives for anyone elses. We celebrate and enjoy the small joys of life that many "normal" families will never understand.

-If you live in a bi-level we can't visit you
Having a son in a wheelchair means that we always ask "can we get a wheelchair into your house/gathering etc?" This is one of the top things on our mind. It never occured to us before Kyle was in a wheelchair and we don't expect others to think of that. But this is reality. We don't want to be rude and we want to go be with other people, but if it isn't handicapped accessible we can't go.

-We go at a slower speed.
Unfortunately we can't keep up with the normal schedule of life, family, fun, and faith. We can't do everything, and that is sometimes frustrating for us, as we realize we don't have the strength to do everything that we want to do. The physical toll of daily lifting and manuvering 91 pounds of Kyle is tiring. Constantly helping him go to the bathroom, and other basic every day functions drains us physically and mentally. With that it is hard to keep up with the rat race of the American life.

-Kyle doesn't function at his physical age.
This was a struggle for us, and we know it is a struggle for others. We can't treat him like a ten year old, he functions at about 4 years old. Now he suprises us many times and makes statements and comments that are beyond a four year old mentality but in general we have to be patient with him. Many misunderstandings and frustration both on Kyle's part and on others part comes from the idea of Kyle functioning at a higher level.

As we continue to learn and get more comfortable in how our specific family works, we hope we can help others understand, and support other families with special needs members.

Slow Down

Everything was packed, the kids were loaded up- it was close to 5 am. It was a race (at least in my mind.) We were going to make it from Northwest Indiana to Vermont in as little time as possible.
It should have taken about 13 hours but if we eat in the car, use a potty chair for the kid/s, and deprive ourselves of any enjoyment we could make it in under 12.
This story played out a couple of times a year for 10 years. One time when Jill was pregnant we only stopped 3 times in the course of that trip.
Every time we would drive right by Niagra Falls, and never stopped. We didn't have time for that, we only had time to get to our destination. The journey was not for enjoyment, it was a neccesary evil.

The race mentality could be an anology for my life. Mattthew 6:34 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

This was not true for my life.
I was only thinking/worrying about what was next. Patience may be a virtue but it wasn't my virtue (and is still a struggle).

There are many lesson's Kyle has taught me, but slowing down and enjoying each day of life is on the top of the list.

Kyle has one speed and it isn't close to being fast. This doesn't just apply physically but in conversation, and in the meticulous way he goes about his life.

He finds joy in many simple things, he views life through different lens than I do. He loves details, he wants to know how things work, he wants to know the intricate details. Whether that be a conversation and asking questions for hours on end,a piece of machinery, or a building project. Kyle wants to know everything about that particular subject.

Kyle's prognosis have also changed the thoughts about the future. It takes work for me to slow down, it is extremely difficult, but the peace that has enfolded our family has been great.

It isn't a race anymore, it is more like a leisurely stroll. Everything isn't a blur, there is beauty, and details. There isn't a frantic pace, there is an understanding that life goes at a slower pace.

This has been an extreme struggle for me. But when we are able to go at Kyle's speed we have found harmony, fun, and enjoyment for the rest of the family.

I am curious what are some of the things that your special needs child has taught you and your family? What are some of the ways the rhythm of your family has changed in a postive way?

Confessions of a special needs dad

The moment I knew Kyle was going to be a boy my expectations soared. He was going to do everything I had done and more, his life was scripted in my mind. Sports would be a central part of his life, just like they had been in mine. One of the first things we did after he was born was watch a football game.

As a new dad I had a lot to learn about expectations and the "ideal" for Kyle's life. Even as he struggled physically we were told by many professionals that it was just a delay and everything was going to be "normal" as he got older.

Then the phone call came. I remember sitting in my office at church, it was a little after 9 on a Febuary morning. Jill called and conveyed the news of the doctors. Kyle had muscular dystrophy. Not knowing what that meant immediately I went online and starting doing research. Reality hit right away, duchene muscular dystrophy was the commonest form and this is probably what Kyle had. Words like wheelchair bound, early death and other horrible things sprang from the page through my eyes and into my heart.

What could I do? As a natural fixer, how can this problem be fixed? How can the expectations be put back into effect? How can my plan for Kyle's life get back on track?

Then it hit me like a ton of bricks, this was an unfixable problem, and this was a new reality. The old expectations died, there was a new expectation that wouldn't involve any of the former.

Over the next months and years, there was the thought of- this is not going to end well. A dread swept over me. Anger, fear, hurt, disappointment, and unmet expectations of life filled my thoughts and life.

Many people tried to help, but I don't know how we could have been helped. We didn't know how to deal with us and we didn't expect others to know how to deal with it either.

9 years into this I still don't know how to deal with this many days. My hope is that I don't view Kyle's situation as a problem but rather this is how Kyle was made. God made Kyle perfect, and it has nothing to do with my expectations or what I would think his life would be like.

I can understand why a lot of dads of kids like Kyle would check out physically or at least mentally. The mentality of- my child has a problem that I can't fix makes us feel helpless and in many ways inadaquate. We have to sit by and watch someone that we care for suffer and there is nothing we can do.

It is my faith that gets me through me on a daily basis, but it doesn't mean that the thoughts and struggles are not there, because they are. It is easy to guard ones heart in order not to feel the emotional pain. But I have missed out on so many special moments in life due to that mentality.

In the end as much of a struggle it is (especially emotionally) there is much joy that is experienced.

Continue to pray for myself and other dads as we struggle with the emotional pain and continue to stay both physically and emotionally involved in our children's lives.

Kyle's radio interview

Kyle isn't much of a talker when it is on a phone or someone he doesn't know. When the opportunity came up for him to do this radio interview it was via phone, it didn't seem like it was going to work. Thanks to the great work of the producer they were able to turn this into a very special and sweet Kyle moment.

http://www.vimeo.com/26977358

Raw Emotion

How is the triathlon going was the text I recieved. I didn't have the words to even begin to describe what was taking place in front of our eyes. The only response I could give was raw emotion.

This wasn't the way it was suppose to play out, this day was suppose to be a fun filled family event as Paul and Kyle toured the north side of valpo via swimming, biking, and running. They accomplished their goal and they finished the triathlon but it was after pain staking hard work, effort, and determination by Paul.

Did Kyle have fun during the race is a question we were asked many times? Fun was not the word to describe what they or we experienced last Saturday. Heart wrenching, inspiring, heart warming, determination, a desire not to give up those are the more appropriate words.


It has taken me a week to process through the emotions and visual images of the day. This triathlon was a very good metaphor for Kyle's life.

Isaiah 40:31- but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.



This picture sums up a thousand words. When I first saw this picture the first thought that came to mind was the poem/story of Footprints in the sand. Kyle didn't have the physical strength to do the race, but there is Paul carrying him even while the physical difficulty was very evident.

What will be taken from a day like this? A man embodied what it was like to love and serve the weak. He gave of himself selflessly, and in the end he gave us a small image of what God does for each of us.

God showed Up

God Shows Up-
Where is God when_______? A common question when pain and suffering does not make logical sense. What about the flip side of the question? What happens when God does show up in a situation that is difficult, painful, or even devastating?

Hindsight is very easy and when at the end of a difficult process we can look back and see the way God appeared. An example of this would be the story of Joseph, the story is a classic story of pain and suffering and then at the end God works it out. During the story it was hopeless and tragic and but the end made it all worthwhile.

During the journey of pain it is difficult to see God in the midst of it. It is very easy to focus on just survival. Jill and I have felt much like that throughout our journey with Kyle.

We have survived, some days better than others. We have gotten small reminders throughout the journey of God’s faithfulness but never in a tangible way until recently.

This adventure with the triathlon has been quite a journey for us. It has been exciting, it has been an encouragement, it has been a way for us to get a little of our story to others. But beyond all of those great things something small but significant to us happened. God showed up. Now how do I know this?

Kyle and Paul had a “photo shoot” for the Post Trib. The photographer took many shots at various times throughout the hour he was there. There were poses and action shots. We had no idea what shot would be used. The following Saturday I received a text- Kyle and Paul are on the front page of the paper. Excited I quickly drove to the grocery store and bought several papers.

When Jill and I got home and began looking and reading the article, a lime green bracelet Kyle was wearing was very visible on the front page of the paper. On this green bracelet only one word could be read and it was legible. It said God.

To think that God doesn’t show up in the most unlikely places is wrong. To see God show up on a our own son's bracelet on the front page of a newspaper is something that we couldn’t have orchestrated or even have thought to do. But yet to use this was a tangible reminder that God is with us through this, and God’s glory is going to be shown through Kyle’s life.

Jill and I have prayed John 9:3 “That God’s work would be displayed through his life” for Kyle and this one small little glimpse has been confirmation that he is.

They didn't leave

Life changes in a split second. The words are from a doctor and the news isn’t good, your child has _______. The diagnosis’ are all different but the results are the same the diseases are going to alter life as usual. In some cases the doctors don’t know specifically what a child has but there is enough evidence to know that life will not be as one envisioned.
In most cases like this men bolt. The fathers who had dreamt of playing sports with their kids, being proud of them for stellar achievements, giving their daughters away for marriage have all been crushed. When a special needs child comes into a family, men leave at an alarming rate- over 80% of the time.
I had the privilege last week to meet some men who didn’t leave. They have stayed despite the unmet expectations of life, they are not going to kids sporting events but rather they are changing their diapers. They have given up their own hopes and dreams to sit by hospital beds for days and months at a time.
These men come from all walks of life, engineers, accountants, ministry, banking industry, self-employed and many other occupations. These men are tough, yet tender, humorous, yet serious, boundless energy, yet a common tiredness.
But don’t feel sorry for these men, they have chosen to stay. They have defied the odds and have stayed with their families. They have seen and experienced precious moments of life that many of us have missed. There are small joys and unexpected happiness of raising a special needs child.
Curiosity and wonder is seen in the eyes and verbal sounds coming from these children. These fathers have patience that is seen in very few. In “normal” society there are some very uncomfortable moments and moments that defy logical happiness or fulfillment. Yet these men tirelessly serve and do what is needed to serve their children. The communication that happens between the fathers and their children is instinctual and can only be known from hours of being and spending time with one’s child.
Fear comes in a different form to these fathers. What happens if my child outlives me? Who is going to care for them? Who is going to protect and love them? The love of a father is precious and seen in so few fathers of special needs children.
This love that I saw from these dads this week was reminiscent of Jesus. A selfless love that is full of patience, kindness, and self-control. It was an honor and a privilege to observe these men in action.
Thank you- Russ, Mike, Frank, Chinglieng, John, and many others for being the dads that model Jesus not only to your kids, but to everyone who comes in contact with you.

Fearfully and wonderfully Made

As I dared brave the world with three children by myself yesterday we ended up going to see Cars 2. After loading up on popcorn and candy and praying no one had to go to the bathrooom during the movie, we had a great time watching the movie. In the midst of the movie there was a couple of scenes about the scraps and scratches on the cars. In one scene Mater is asked to remove his scratches and dings, but he refuses because of the memories that came from those scratches.
What does being perfect look like? How much of our life revolves risk aversion and worrying about covering up all the scratches and dents of our own imperfections?
Psalm 139:14 "I will praise you because I am fearfully and wonderfully made.Your works are wonderful. I know that full well."
As I continue to reflect on our week at Joni and Friends camp, that concept of being fearfully and wonderfully made seems to not apply to most of the people we met. As special needs families we live in the land of misfit toys. The scrapes and scares are much tougher to cover than that of "ordinary" people. The filters and the social norms that society as a whole lives by does not apply here.
In one of the sessions a pastor from Chicago shared with us his journey. he has a daughter who has numerous issues including cerebral palsy. The pastor shared how he was praying one day about his daughter about how he would love God to heal her. The response he felt that God told him was "I made her perfect, you are the one who has an issue with her."
Does God really make people that are not even close to perfect by our standards? In Exodus Moses is making excuses why he can't serve God due to his inadequacies’. God's response is in Exodus 4:11 "The Lord said to him, "who gave man his mouth? Who makes him deaf or mute? Who gives him sight or makes him blind? Is it not I, the Lord?
Another comment that was made during the week was "is the church (kingdom of God) complete if there aren't special need people? Not just being on the sideline but being an intrical part of what God is doing.
The singing while at camp may have been the worse I have ever heard from a personal standard. Kyle covered his ears numerous times say "this is horrible." But the heart that was singing those songs was as sincere and full of faith and hope in the words as I have ever seen.
One moment that will last in mind was a twenty something young man who was in an electric wheelchair, could hardly speak, and was in pretty rough shape. The last night there was a talent show, he got up and sang/hoarse whispered "It is well with my soul." I think he really believed it.
In John 9 the disciples and Jesus see a man born blind sitting on the side of the road and the disciples ask why? Jesus answer in verse 3 "Neither this man nor his parents sinned, said Jesus "but this happened so that the work of God might be displayed in his life."
We saw that display last week. People were given a chance to be the people God had made them to be. As many of the families were leaving, there was tears and crying. In general it was because of fears of going back to a world that is so difficult for them. They wanted to stay in an environment where they were seen through the eyes of someone who had created them fearfully and wonderfully made.
My guess is heaven is going to look a whole lot more like that week than many other things I imagined or envisioned.