You can pre order saving our sons and daughters too

You can pre order by clicking on the link. This book is a Chicken soup style book about Duchene Muscular Dystrophy. There are 40 different authors affected by dmd and I wrote part of Kyle's story for it.

dealing with pain

Romans 7:15-
"For I do not understand my own actions. For I do not do what I want, but I do the very thing I hate."

Last night I was again made aware of how a verse like this plays out in someones life. A young mother of 2 children who used to be one of my "youth group" kids died of a drug overdose a few months ago. I unfortunately didn't find out until yesterday. It is doubtful that many on this path plan to die, plan to ruin their lives, the plan is to ease the pain for a moment and then go on with life. Getting help down the road, or feeling guilty immediately afterwards, letting people down.

This is the second encounter of death by overdose I have experienced in the last week. A good friend of mine spoke at another young man's funeral last week who also succumed to his addiction.

Pain comes in all different forms of life. There are multiple thoughts that have run through my head over the past week.

1. Pain comes to families in many different ways. I have had it said to me that maybe God gave Kyle this disease so he wouldn't get involved in drugs or other addictions. I think that was an extremely outlandish thing to say but on the flip side, I know that those families that deal with the addiction of a loved one is extremely painful. Seeing it semi first hand, the worry and the wonder never leaves the family. The life time struggle for so many rips families apart.

2. Masking pain comes in many forms. Inner turmoil needs to be dealt with some how and there are easier ways than others to deal with it. Well the short term that is.

3. I had someone come up to me at church on Sunday who I hadn't seen in months when asked why he told me he had made some bad decisions and stayed away. I get it when we are living ashamed and guilt filled lives we want to stay away, but is that the best thing?

As I think of my situation and dealing, coping, surviving, struggling through pain and hurt it is easy to mask and hide it. I want to escape on a regular basis and I do sometimes. It may not be illegal and it may not be deemed dangerous but I still have the same mentality. I have regrets, I have issues, I can relate to Paul when he said "I dont understand my actions." I guess in some way I do understand I want to escape, I want to leave a situation I can't control. I want to leave the mundane.

As I continue to process through dealing with pain, my heart aches with those struggling through addiction and those around them. My heart aches for those who feel ashamed and hide it.


People ask me many times why I became a pastor, or am a follower of Jesus. It can simply summed up by Mark 2:14 when Jesus was asked why He came he said "It is not the healthy who need a doctor, but the sick. I have not come to call the righteous, but sinners."

Having a relationship with a God who understands and is with us while we are in pain and suffering gets me through life on a daily basis.

Time flies

I had this strange epiphany the other night as our family was driving home from our weekly Friday night family dinner. We were flipping through the radio stations and we passed a 1980s song. I can't remember which classic band it was- Wham, whitesnake, men at work or some other band that immortilized that decade. As I was calculating the time between now and the early 1980s it was 30 years ago. I realized that when I was listening to this song in the 80s it was the 1950s that was 30 years earlier.

Time travels very quickly. Way to quickly, Kyle will be celebrating his 12th Birthday. As each week speeds by the feeling of time slipping through our hands also happens. I unfortunately do not cherish the moments very much in life. I tend to look to the future and am preoccupied with fear, hope, and excitement for what lies ahead. It is extremely difficult to sit still and enjoy today.

I have to force myself to slow down and savor times. This week I have the opportunity to do this. While Jill is in Florida, I have the time to enjoy my kids. I have the priviledge of taking them to dance class which Ayden is now a part of. (side note) last week when Ayden was getting his haircut the hairdresser asked Ayden if he played any sports. His response was "No I am more into dance."

I get to do all the mundane things of getting them dressed, ready, and off to school. Talk, listen, and help them with homework. There maybe (will be) stressful moments in this week. But there are only so many of these moments left. There are only so many moments left of childhood. Before I know it, 10 more years will pass.

Regrets come in many ways, shapes, and sizes. Regrets of how I used my time is going to be on the top of my list. The book of Ecclesiastes addresses many of these life issues. Throughout Ecclesiastes the author writes that so many parts of life is meaningless, futile, vain, or empty.

In the end of the book his summation is to "Fear God and keep his commands."

Even as I spend this next week with my kids, how is that being shown and taught to them. How is fearing God and keeping his commands being taught to my kids? How am I coveying to them that many of the pursuits of life are meaningless?

When Lady Gaga is a distant memory am I still going to be struggling with the same issues as now? Are my kids going to be searching in vain for fullfillment in ways that can't be fullfilled?

Fabric of life

Kyle absolutely loves Pee Wee Herman. Second to Tigger he is Kyle's favorite character. I never thought I would ever have to relive the annoying laugh, the goofy characters, or just the weirdness that was Pee Wee Herman.

I find it very interesting the traditions, moments, memories, and pieces of life that our children latch on to. I would have loved to pass down GI Joe, Alf, or the smurfs to my kids for their enjoying pleasure. But no it was Pee Wee Herman that emerged as the favorite. For some reason Ayden is scared to death of Alf.

But beyond tv memories from childhood, and moments of goofiness what else is being passed on? What memories are becoming long lasting?

Recently we were looking through pictures and Ayden got real excited when he saw a picture and practically yelled "Kyle that was when you could walk."

That is going to be fabrics of Ayden and Ellyse's lives remembering when Kyle could walk and play. It already seems like a distant memory.

What are the lasting impacts of our home on them? What will be the affect on them throughout their lives? What are Jill and I teaching them through all of this?

Many times it isn't intentional because we are just trying to survive. How is this going to influence who they become? There is a fine line between only focusing on Kyle and his needs and neglecting other needs. "The tyrany of the urgent" how is todays immediate problems effecting the long term?

As much as we have tried to prepare ourselves for this life, and the different stages of dmd I still feel very unprepared. The energy for many normal things in life gets put into just living. How does this effect the rest of our families lives? Both individually and as a unit?

The strands that make up who we are, are varied and are made up both of the good and bad experiences of life.

Today I can't say how this will effect each of us in our family long term. But it will be a defining strand in each of our lives.

A summer pastime to get me through January

Soon after Kyle's diagnosis I had the thought I wanted to take Kyle to many baseball games at places throughout the US. That was back in 2004, and we went to our first game in Chicago.

I remember the day well it was a Saturday afternoon. Kyle walked back and forth in the row we were in for the first four innings then he fell asleep until the 7th inning and because of the nap we were able to stay for the whole game. That was our first game, but to this point it was also our last.

Baseball has always been near and dear to my heart. One of the best memories of my childhood was the first time I went to Boston to see the Red Sox play when I was ten.

Summer equaled time spent playing, watching, and going to baseball games. Throughout my childhood and adulthood my seasons have been thought around the baseball schedule.

As time past on I thought going to baseball games with Kyle would be one of our traditions but after that first game I haven't made the time.

I was reminded today of our first game by a picture I found while going through some old pictures.

As we experience the first snow of the year, I am reminded of summer and even as we experienced much last year a baseball game has to be part of our plans for this year.

Not having went back to New England in 5 years maybe it is time to take Kyle to Fenway Park for the first time.

Kyle's dance

Childhood leaves us quite suddenly, and it seems to speed up for us as parents. It seemed much longer as a child, but seeing childhood speed by for my kids leaves me wondering what are the memories I have. What are the moments that are going to be indellably ingrained into my memory.

Recently we were looking through some pictures, and Ayden suddenly exclaimed: "this is when Kyle could walk." Having a child with dmd childhood becomes even more cherished because the older they get the more the deterioration sets in and the sweeter the childhood memories are. Not only are the childhood memories great for each of our children, the memories of Kyle's childhood will be equally memorable.

When Kyle could walk he would get excited and there was this uncoordinated dance move that he would do. It would involve some hip swinging, and look a little bizzare but it was a move he would do to show his excitement.

It was through looking through those pictures that day that brought the memories of those times. Although Kyle can not walk at all in normal conditions. He can still walk to some degree in water.

During the christmas break holiday we were able to spend the night at a hotel with a pool. Through careful manuvering we were able to get Kyle into the pool. When he got into the pool the water was able to take the pressure and the weight off of Kyle and he was able to form some sensblance of walking. As he began to gain a little balance excitement came over him, and then came the Kyle dance. We hadn't seen it in about a year, but in the water he was able to move somewhat freely and the excitement led to the expression that became synonomus with his excitement.

For a brief second his disinigration was forgotten and the memories of the past were renewed.

I believe God gives us small blessing each and every day. Some days it takes some work to find them, but when circumstances and situations are tough anytime dancing happens is a blessing.

Kyle still dances in the house, it just involves wheelchair spins, and a lot of arm raising. Each day that he is here with us is a blessing and although there inconviences, and things we wouldn't have wished for God blesses us and takes care of us.

Endurance

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

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

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

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

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

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

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

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

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