Wednesday, November 30, 2011


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.

Saturday, November 19, 2011

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.

Wednesday, November 9, 2011

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.

Sunday, November 6, 2011

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.