Friday, July 29, 2011

Confessions of a special needs dad

The moment I knew Kyle was going to be a boy my expectations soared. He was going to do everything I had done and more, his life was scripted in my mind. Sports would be a central part of his life, just like they had been in mine. One of the first things we did after he was born was watch a football game.

As a new dad I had a lot to learn about expectations and the "ideal" for Kyle's life. Even as he struggled physically we were told by many professionals that it was just a delay and everything was going to be "normal" as he got older.

Then the phone call came. I remember sitting in my office at church, it was a little after 9 on a Febuary morning. Jill called and conveyed the news of the doctors. Kyle had muscular dystrophy. Not knowing what that meant immediately I went online and starting doing research. Reality hit right away, duchene muscular dystrophy was the commonest form and this is probably what Kyle had. Words like wheelchair bound, early death and other horrible things sprang from the page through my eyes and into my heart.

What could I do? As a natural fixer, how can this problem be fixed? How can the expectations be put back into effect? How can my plan for Kyle's life get back on track?

Then it hit me like a ton of bricks, this was an unfixable problem, and this was a new reality. The old expectations died, there was a new expectation that wouldn't involve any of the former.

Over the next months and years, there was the thought of- this is not going to end well. A dread swept over me. Anger, fear, hurt, disappointment, and unmet expectations of life filled my thoughts and life.

Many people tried to help, but I don't know how we could have been helped. We didn't know how to deal with us and we didn't expect others to know how to deal with it either.

9 years into this I still don't know how to deal with this many days. My hope is that I don't view Kyle's situation as a problem but rather this is how Kyle was made. God made Kyle perfect, and it has nothing to do with my expectations or what I would think his life would be like.

I can understand why a lot of dads of kids like Kyle would check out physically or at least mentally. The mentality of- my child has a problem that I can't fix makes us feel helpless and in many ways inadaquate. We have to sit by and watch someone that we care for suffer and there is nothing we can do.

It is my faith that gets me through me on a daily basis, but it doesn't mean that the thoughts and struggles are not there, because they are. It is easy to guard ones heart in order not to feel the emotional pain. But I have missed out on so many special moments in life due to that mentality.

In the end as much of a struggle it is (especially emotionally) there is much joy that is experienced.

Continue to pray for myself and other dads as we struggle with the emotional pain and continue to stay both physically and emotionally involved in our children's lives.

Wednesday, July 27, 2011

Kyle's radio interview

Kyle isn't much of a talker when it is on a phone or someone he doesn't know. When the opportunity came up for him to do this radio interview it was via phone, it didn't seem like it was going to work. Thanks to the great work of the producer they were able to turn this into a very special and sweet Kyle moment.

Monday, July 25, 2011

Raw Emotion

How is the triathlon going was the text I recieved. I didn't have the words to even begin to describe what was taking place in front of our eyes. The only response I could give was raw emotion.

This wasn't the way it was suppose to play out, this day was suppose to be a fun filled family event as Paul and Kyle toured the north side of valpo via swimming, biking, and running. They accomplished their goal and they finished the triathlon but it was after pain staking hard work, effort, and determination by Paul.

Did Kyle have fun during the race is a question we were asked many times? Fun was not the word to describe what they or we experienced last Saturday. Heart wrenching, inspiring, heart warming, determination, a desire not to give up those are the more appropriate words.

It has taken me a week to process through the emotions and visual images of the day. This triathlon was a very good metaphor for Kyle's life.

Isaiah 40:31- but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.

This picture sums up a thousand words. When I first saw this picture the first thought that came to mind was the poem/story of Footprints in the sand. Kyle didn't have the physical strength to do the race, but there is Paul carrying him even while the physical difficulty was very evident.

What will be taken from a day like this? A man embodied what it was like to love and serve the weak. He gave of himself selflessly, and in the end he gave us a small image of what God does for each of us.

Sunday, July 24, 2011

God showed Up

God Shows Up-
Where is God when_______? A common question when pain and suffering does not make logical sense. What about the flip side of the question? What happens when God does show up in a situation that is difficult, painful, or even devastating?

Hindsight is very easy and when at the end of a difficult process we can look back and see the way God appeared. An example of this would be the story of Joseph, the story is a classic story of pain and suffering and then at the end God works it out. During the story it was hopeless and tragic and but the end made it all worthwhile.

During the journey of pain it is difficult to see God in the midst of it. It is very easy to focus on just survival. Jill and I have felt much like that throughout our journey with Kyle.

We have survived, some days better than others. We have gotten small reminders throughout the journey of God’s faithfulness but never in a tangible way until recently.

This adventure with the triathlon has been quite a journey for us. It has been exciting, it has been an encouragement, it has been a way for us to get a little of our story to others. But beyond all of those great things something small but significant to us happened. God showed up. Now how do I know this?

Kyle and Paul had a “photo shoot” for the Post Trib. The photographer took many shots at various times throughout the hour he was there. There were poses and action shots. We had no idea what shot would be used. The following Saturday I received a text- Kyle and Paul are on the front page of the paper. Excited I quickly drove to the grocery store and bought several papers.

When Jill and I got home and began looking and reading the article, a lime green bracelet Kyle was wearing was very visible on the front page of the paper. On this green bracelet only one word could be read and it was legible. It said God.

To think that God doesn’t show up in the most unlikely places is wrong. To see God show up on a our own son's bracelet on the front page of a newspaper is something that we couldn’t have orchestrated or even have thought to do. But yet to use this was a tangible reminder that God is with us through this, and God’s glory is going to be shown through Kyle’s life.

Jill and I have prayed John 9:3 “That God’s work would be displayed through his life” for Kyle and this one small little glimpse has been confirmation that he is.

They didn't leave

Life changes in a split second. The words are from a doctor and the news isn’t good, your child has _______. The diagnosis’ are all different but the results are the same the diseases are going to alter life as usual. In some cases the doctors don’t know specifically what a child has but there is enough evidence to know that life will not be as one envisioned.
In most cases like this men bolt. The fathers who had dreamt of playing sports with their kids, being proud of them for stellar achievements, giving their daughters away for marriage have all been crushed. When a special needs child comes into a family, men leave at an alarming rate- over 80% of the time.
I had the privilege last week to meet some men who didn’t leave. They have stayed despite the unmet expectations of life, they are not going to kids sporting events but rather they are changing their diapers. They have given up their own hopes and dreams to sit by hospital beds for days and months at a time.
These men come from all walks of life, engineers, accountants, ministry, banking industry, self-employed and many other occupations. These men are tough, yet tender, humorous, yet serious, boundless energy, yet a common tiredness.
But don’t feel sorry for these men, they have chosen to stay. They have defied the odds and have stayed with their families. They have seen and experienced precious moments of life that many of us have missed. There are small joys and unexpected happiness of raising a special needs child.
Curiosity and wonder is seen in the eyes and verbal sounds coming from these children. These fathers have patience that is seen in very few. In “normal” society there are some very uncomfortable moments and moments that defy logical happiness or fulfillment. Yet these men tirelessly serve and do what is needed to serve their children. The communication that happens between the fathers and their children is instinctual and can only be known from hours of being and spending time with one’s child.
Fear comes in a different form to these fathers. What happens if my child outlives me? Who is going to care for them? Who is going to protect and love them? The love of a father is precious and seen in so few fathers of special needs children.
This love that I saw from these dads this week was reminiscent of Jesus. A selfless love that is full of patience, kindness, and self-control. It was an honor and a privilege to observe these men in action.
Thank you- Russ, Mike, Frank, Chinglieng, John, and many others for being the dads that model Jesus not only to your kids, but to everyone who comes in contact with you.

Fearfully and wonderfully Made

As I dared brave the world with three children by myself yesterday we ended up going to see Cars 2. After loading up on popcorn and candy and praying no one had to go to the bathrooom during the movie, we had a great time watching the movie. In the midst of the movie there was a couple of scenes about the scraps and scratches on the cars. In one scene Mater is asked to remove his scratches and dings, but he refuses because of the memories that came from those scratches.
What does being perfect look like? How much of our life revolves risk aversion and worrying about covering up all the scratches and dents of our own imperfections?
Psalm 139:14 "I will praise you because I am fearfully and wonderfully made.Your works are wonderful. I know that full well."
As I continue to reflect on our week at Joni and Friends camp, that concept of being fearfully and wonderfully made seems to not apply to most of the people we met. As special needs families we live in the land of misfit toys. The scrapes and scares are much tougher to cover than that of "ordinary" people. The filters and the social norms that society as a whole lives by does not apply here.
In one of the sessions a pastor from Chicago shared with us his journey. he has a daughter who has numerous issues including cerebral palsy. The pastor shared how he was praying one day about his daughter about how he would love God to heal her. The response he felt that God told him was "I made her perfect, you are the one who has an issue with her."
Does God really make people that are not even close to perfect by our standards? In Exodus Moses is making excuses why he can't serve God due to his inadequacies’. God's response is in Exodus 4:11 "The Lord said to him, "who gave man his mouth? Who makes him deaf or mute? Who gives him sight or makes him blind? Is it not I, the Lord?
Another comment that was made during the week was "is the church (kingdom of God) complete if there aren't special need people? Not just being on the sideline but being an intrical part of what God is doing.
The singing while at camp may have been the worse I have ever heard from a personal standard. Kyle covered his ears numerous times say "this is horrible." But the heart that was singing those songs was as sincere and full of faith and hope in the words as I have ever seen.
One moment that will last in mind was a twenty something young man who was in an electric wheelchair, could hardly speak, and was in pretty rough shape. The last night there was a talent show, he got up and sang/hoarse whispered "It is well with my soul." I think he really believed it.
In John 9 the disciples and Jesus see a man born blind sitting on the side of the road and the disciples ask why? Jesus answer in verse 3 "Neither this man nor his parents sinned, said Jesus "but this happened so that the work of God might be displayed in his life."
We saw that display last week. People were given a chance to be the people God had made them to be. As many of the families were leaving, there was tears and crying. In general it was because of fears of going back to a world that is so difficult for them. They wanted to stay in an environment where they were seen through the eyes of someone who had created them fearfully and wonderfully made.
My guess is heaven is going to look a whole lot more like that week than many other things I imagined or envisioned.