Wednesday, January 25, 2012

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.

Thursday, January 12, 2012

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.

Wednesday, January 11, 2012

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.

Wednesday, January 4, 2012


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.