Thursday, August 25, 2011


"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.

Monday, August 22, 2011

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.

Wednesday, August 17, 2011

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.

Monday, August 15, 2011

"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.

Wednesday, August 10, 2011

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.

Sunday, August 7, 2011

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.

Friday, August 5, 2011

"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.

Wednesday, August 3, 2011

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.

Monday, August 1, 2011

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?