Friday, September 30, 2011

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.

Wednesday, September 28, 2011

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.

Saturday, September 24, 2011

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.

Friday, September 23, 2011

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.

Wednesday, September 21, 2011

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.

Friday, September 16, 2011

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.

Friday, September 9, 2011

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.

Thursday, September 1, 2011

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.