This blog entry is reprint from an article from LIFT Magazine. I have been writing the sibling sideline article for some years for LIFT. You can see this magazine online through this link:
www.liftdisability.net/liftmagazine/Lift%20Magazine%2021-1%20internet.pdf
It is for families that experience disability with articles written from each persons perspective in the family. This article was written previous to my last blog post here. I would encourage you to read the entire magazine, which my friends Jim and Rhonette Hukill write for and edit.
“The battlefield is a scene of constant chaos. The winner is the one who controls that chaos, both his own and the enemy’s.”
Napoleon Bonaparte
I grew up on a battlefield, where life could change in a minute. My brother Dan had a physical disability that took his life at the age of 21, just 16 years ago. He battled to breath, to be heard, for equality, and for life. My parents battled to keep Dan alive, to hold together a marriage and family despite the odds, and to make life consistent for themselves and their family no matter the circumstance. My younger sister and I battled to to be seen and heard, and to cope with chaos and change. Our family had stretches of peace and consistent life, where Dan’s disability went unnoticed to us because it was just a part of life. Those regular stretches would get disrupted by the chaos of extreme health issues, hospital stays, battles with the school, and thoughts of death. Life as usual could at any moment suddenly come to a complete halt, changing what was important one minute to became secondary to Dan and his battle for life in the next. Our family marched forward together no matter what the circumstance, and made it through life and death. I have carried the aftershock of the war for the 20 some years of my adult life. The post combat trauma I experienced is real, and the pain has been important to deal with.
I am now 42 years old, I have a wife and children of my own. Disability is still just as important in my life as it was growing up but in a totally different way. My life has been impacted in everyway by growing up with disability. Most of what I am and do can be traced to it. Many of the positive qualities in me are because of the blessing of disability. I have written in past articles here about the many positive characters that are exhibited in siblings of people with disabilities. But it is only recently that I have been able to deal with the negative issues that have affected me because of the fallout of living in the battle of disability. I have been through counseling and have learned to recognize I have been fighting a battle with ghosts and an enemy that only exists in my the scars of my mind. Growing up living in the battlefield made life so often feel totally out of control. I grasped for control in many ways; acting out for attention, eating to sooth pain, showing anger to keep people distant, manipulating to get my way, and taking charge of relationships whenever possible. I have thought that life on the battlefield, one filled with chaos in me and in others, just had to be controlled to be safe. The above quote by Napoleon, describes how I have perceived living for most of my life, but it is wrong thinking. Only in Gods hands is the chaos under control. The battle has purpose if we live it out trusting Him, and the battlefield is not where we have to live forever. The war ended yet my survival instincts, fighting skills, emotional state, and focus have continued in battle mode. While a few of those things have helped me as a leader in my adult life as a ministry director, they have hurt me severely in relationships, self perception, physical health, and my trust of God, myself and others. I have finally come to a place where I have walked off the battlefield in my mind, where I can feel the peace that God has given me for the first time.
In my ministry now comes opportunities to help families that are in the midst of the same battle I grew up in. Offering parents a view from post-battle can help them see better how to help their kids in the midst of what they are encountering. Jim and Rhonette are directing a camp this summer that will be so important in the lives of families that encounter disability. It is a long needed furlough for many on the front lines. A time for parents to stop surviving for a few days and just live and connect. A place where kids with disabilities can grow and learn that they are created by God for a purpose. An opportunity for those kids’ siblings to to realize that although life feels out of control, God has it all under control. I think back to my childhood and wonder if our family had this opportunity, how it would have impacted us. So, lets make sure no one is left behind to continue fighting this war without help, by committing our prayers, funds, and time to help them get this new venture off the ground.
