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Archive for October, 2016

beth-clark

Have you ever been hijacked by the lie that you are a nobody? You begin to compare yourself to others around you and you think, “What have I ever done that has really made a difference in the world I live in?” You see people who have started successful businesses, neighbors who have prospered financially, relatives whose kids are more athletic or intellectually gifted than your children and you hear yourself whisper the distorted deceptive untruth that starts with, “I’m just a….” I’m just a music teacher. I’m just a stay at home mom. I’m just a mid-level manager. I’m just a receptionist at the bank. I’m just a parent of a child with special needs. And once you let the “I’m just a…” lie fester in your mind it will suck life from you robbing you of the ability to realize and enjoy the difference you can and are making in the world. All of us have the potential to make a difference.

I read a quote yesterday written by Katie Davis, a young woman who believes in the power of changing one life at a time.  She wrote,

“People who really want to make a difference in the world usually do it, in one way or another. And I’ve noticed something about people who make a difference in the world: They hold the unshakable conviction that individuals are extremely important, that every life matters. They get excited over one smile. They are willing to feed one stomach, educate one mind, and treat one wound. They aren’t determined to revolutionize the world all at once; they’re satisfied with small changes. Over time, though, the small changes add up. Sometimes they even transform cities and nations, and yes, the world.”

Beth Clark, Kisses from Katie: A Story of Relentless Love and Redemption

I shared this quote with our volunteer hosts who I often hear say, “I really don’t know if I’m making a difference.” This is what I wrote them;

“I hope you believe that you are making a difference in the world!  Every time you give your undivided attention to listen to a mom or dad share their precious story you are breathing life into their very souls.  Every time you cry with or laugh with or sit quietly with a tired and weary caregiver you remind them they are not alone and what they do as a parent really really matters.  When you have the privilege of entering into the sacred place of broken dreams and heartache you have the incredible opportunity to remind our parents that they are loved by God.  You are making a difference by reminding the families you host that their life and story matters.”

I have the same hope for you.  I hope today you believe that you too can and are making a difference! Maybe you have to change your expectations and become satisfied with small changes as Beth says in her quote. Celebrate the fact that you were there the first time your child used a sign to tell you they wanted a drink. You made a difference! Celebrate making it through one more IEP review with everyone still alive at the end of the meeting. You are making a difference. Be thankful for those rare moments your typical siblings share their hurts and fears with you. You are making a difference. Celebrate the simple fact your children were dressed, fed, and now rest in bed at the end of a long and grueling day. You are making a difference.

You are not a nobody! Say it out loud, “I am not a nobody! I am a difference maker that holds the unshakable conviction that every life matters.”  Now go transform the world one person at a time.

 

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you-kids-can-feel-just-as-alone-as-you

Every summer I went to Boy Scout camp.  While I enjoyed the hiking and fire building and working on my merit badges, I often felt a little lonely.  Night time was the worst.  I loved it when I got a letter from home.  They were always brief; filled with what mom was cooking for dinner that night, how the tomatoes in the garden were growing, or what my dad was working on out in the shop.  But they always ended with the reminder that mom and dad loved me and that they were looking forward to see me and hear all about what I had done that week.  Whenever that feeling of loneliness would poke itself into my mind, I would pull out the letter and reread it, reminding myself that I really wasn’t alone.

Last week I was struck by something my son Chris said in his comments as David’s brother.  He wrote, “Your kids can feel as alone as you.”  For the past five years I have said countless times to countless moms and dads that they are not alone.  Never once did I stop to think or remind the parents we serve that their typical kids also needed to be reminded that they too are not alone.  Like campers huddled around a fire feeling far from home and alone they need a note, a reminder, a message from you as their parent reminding them that they are not alone and are loved as much as their brother or sister who has special needs.

Several weeks ago I read a blog written by Ellen Stumbo entitled, “To the typical siblings.”  Ellen writes a letter from a parent to a typical sibling of a brother or sister who has a disability.  You can read it by clicking the following link:

http://www.ellenstumbo.com/typical-siblings/

As I read the letter I wished I would have written something like this to my boys.  She communicates so well what I would have wanted to say and what they needed to hear.  So I decided to take her letter as a template and rewrite it from me.  Here is what I came up with:

Dear Chris and Dan,

I know you have had to sacrifice so much as David’s brothers, and I wish you hadn’t. For the many times you have thought it wasn’t fair, Mom and I have felt it too. And if you’ve had to miss out on life experiences, please know that we wish we could offer you the world.

Perhaps at times you’ve felt overlooked, because David’s needs demand all of our attention. We hope you know how often we think about you and of the wonderful young men you are becoming. We are very proud of you. You make our lives so beautiful.

Thank you for sharing how David’s disability has affected you. Yes, there have been sacrifices and some things you’ve had to give up, but you have gained so much from having David as your brother. There is no doubt God has used David’s disabilities to shape you into who you are today. You are both compassionate, caring, accepting, and kind human beings.

There is little doubt both of you are more mature than others your same age. You have probably had more responsibilities than most of your peers. I guess in some ways you’ve lived a different life, life impacted by disability. We are so proud of you.  There is no doubt that because of your belief in the value of every life, your compassion for others, your faith in a good and loving God, you will go out into the world and change it.

Thank you Chris and Dan for being you. Please don’t ever forget we love you. If you ever wonder who we look up to, it’s you. We could not be prouder or love you more fiercely.

I wonder if you might find a few minutes this week to write a letter to each of your kids who need to simply be reminded they are not alone.  Feel free to write your own, use Ellen’s or my letter as a template.  It doesn’t have to be long, just a note from mom or dad reminding them that you are proud of them, that you love them, and that they are not alone.  I bet they will hold on to it and read it the next time they feel alone.

 

 

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the-boys

Dan, David, and Chris

 

Do you remember the first time you drove a car all by yourself?  Do you remember what you were doing and where you were when the planes hit the twin towers?  Can you recall your first kiss?  Some of our memories are seared so deeply in our heart mind and soul that they become a part of the very fabric of our lives.  These experiences are normally filled with emotions which act like a highlighter pen capturing and emphasizing the event or person or location forever in our mind.

One of the memories I will always carry with me is telling Chris and Dan that their brother David was going to die as a result of his disease. “Your brother has Batten Disease, it is untreatable and always fatal.”  Even typing the words makes me nauseous again.  My few words and the experience of the following years changed my boys forever.

For thirteen years Chris and Dan labored, loved, and cared for David with us in their own unique ways. They fought and played like normal brothers.  Sometimes they celebrated the fact that because of David’s white cane and obvious disability we were ushered to the front of the line at Darian Lake or the Empire State Building.  Other times they felt alone and ignored and I am sure at times “less loved” because of the extra effort and time it required for us to care for David.  Chris and Dan dealt with David’s illness each in their own unique way.

I asked both of them if they would be willing to share something about being David’s brother.  I am so proud of my two boys and the men they have become.  Thank you for listening to a part of their story.

CHRIS:

I think it must be hard for some people to remember that to me David was just my little brother. We had already developed a relationship before his diagnosis and for a long time nothing but his sight was affected by his disease. David drove me nuts, tried to get under my skin, and was a pesky little brother following me and my friends around all the time. I didn’t think about him as “my special needs brother,” as “blind,” or as “poor David.” Sure, sometimes I didn’t consider his disability the way I should have, and I wasn’t as gracious or kind to him as I should have been, but that had absolutely nothing to do with the fact that he had a disability: he was my brother. We fought, played, and stood up for each other like brothers do.

More than even their parents, I think siblings of special needs children have an easy time thinking about their sibling as a person. We understand that our siblings need more help than we do. We know that means less time for us than if we had a typical sibling. We also wouldn’t trade our sibling for the world. Parents: don’t treat your kids like they don’t understand this. Your kids can feel as alone as you in this, but the reality is you’re a team and you can both support each other. By spending just a little time with them,

DAN:

Being David’s little brother was a challenge that crescendoed until his death in 2009. Our interactions in life until he was about 14 years old were pretty typical for brothers 4 years apart. We fought, played games, I “spied” on him and his friends, and I tagged along with them as often as I could. Around age 14 David’s disease started showing its ugliness and he began having difficulty with day to day things. This got worse over the years. Eventually, he could no longer bathe, eat, walk, or talk.

 Watching his progression towards death (literally his brain cells dying) was incredibly difficult for me to deal with. I was overwhelmed with depression and anxiety and was unable to focus on anything but making pottery and searching for ways to escape what I was feeling. I began seeking respite in anything that would distract me from his decline, spending lots of time with friends, riding my dirt bike, and making pottery. I also snuck alcohol from the liquor cabinet, took my prescription pills in a way I was not prescribed, and used anything I could get my hands on to escape the reality of my brother slowly dying. Too much alcohol or a bad combination pills could have ended my life and devastated my family. All I wanted was freedom from my depression and for the anxiety to stop. I could think only about ME.

 I have to thank God for preserving my life through those “Dark Ages”. I was selfish and desperately needed to understand the truth of Romans 8:28 which speaks of God working all things together for the good of those who love Him [God].

 My parents loved us a ton. I remember it would come up in conversation amongst my friends that they are great, and it’s true they are! I don’t think this is just a coincidental trait of theirs; I see now that they sought to honor God in the way they raised us three boys. They disciplined us in a way that allowed us to understand the consequence for disobedience, to understand respect for others and for women, they raised us in the truth of the bible, and loved us unconditionally. Even through all of the pain and suffering I caused my parents in choosing the easy way out with alcohol and foolish decisions, they chose to love me and never expressed that the opposite was true. Even when they were utterly displeased and disappointed in my decisions, they made sure to tell me they loved me and cared for me. This is so important. I knew my parents loved me even if their attention was placed on David in an unequal amount of the time. Even when I felt neglected or second place, I never experienced the question of whether they loved me. I can’t say it’s the most important thing for a child, but knowing that their parents unconditionally love them is pivotal to their emotional health.

 If there is one thing I could have changed, it would have be my perception that I couldn’t come to my parents with my struggles. That I couldn’t tell them the truth about what I was feeling, or thinking, or desiring. I was fearful of their response and didn’t want to cause them any more upset than they already had with David’s sickness. This was foolish of me and I wish I would have taken advantage of their Agape (selfless) love for me in that time.

 

 

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My Three Sons

mischief-afloat

Brenda and I bought our first real painting for our home in Door County, Wisconsin. It’s entitled “Mischief Afloat” by Pamela Murphy.  She is a local artist who collects old photographs and chooses figures from them for her paintings.  She oftentimes doesn’t paint the faces of the people in the photographs allowing the viewer to find a little of themselves or others they love in her paintings.

The moment we saw the painting we saw our three sons sitting in the boat. Christopher our oldest sits in the front of the boat as the elder statesman, contemplating the history of boat construction and use.  Always seeking to learn more and understand why things do what they do, he carefully estimates the load bearing weight of the boat and its safety features to ensure his boys would be safe to sail.  Slowly he begins to plan and dream how he could build his own boat with new and improved features.  There is no doubt he will do it.  David stands in the middle as the second born brother.   While he is blind he listens to the water as the boat carefully cuts through the morning mist.  He feels the water that hangs in the air on his face.  With his head tilted up he listens to the seagulls as they fly over.  While at times his incessant talking becomes an irritant to his brothers, it sadly will soon be missed.  Daniel sits in the back of the boat dangling his hand in the water dreaming of how he could catch a fish with his bare hands.  His mind is filled with color and texture and light as he captures the stillness and the beauty of the moment in his mind and heart, hoping to later share it with others through a story or painting or piece of pottery.  At the same time he is poised to jump into the water, not wanting to miss the adventure that waits below the surface.  My three sons!  All very different, all very loved by their mom and dad, each a unique masterpiece.

Over the past few weeks I have spent a lot time looking at the painting that hangs on our fireplace, thinking about my three sons and the unique adventures they are on. While I often write about David, I realized I have not shared much about Chris nor Dan.  It isn’t that they don’t have a story to tell or that I love them any less than I loved David.  Sadly I think I take their presence in my life for granted.  I let the business of life stop me from simply calling to say, “I love you or what are you doing?”  I listen to the little lie in my head that says they are too busy or occupied with their own lives to want to hear from their old man.  I let a small hurt build into a huge wall that was never meant to be taken the way I heard it, causing me to miss out on experiencing their adventures of “Mischief Afloat.”  Thankfully I know Chris and Dan love me.  And thankfully I am convinced they know I love them.  We are quick to say we are sorry and we are willing to say I forgive you.  And I love the fact that they often invite us into their boats to share their lives with their beautiful families.  I love sailing with all of you!

Boys I celebrate your uniqueness and am blessed to be your dad.  Chris, if you ever start building that new boat I want to help. Dan, I want to watch you as you create that next masterpiece, but please don’t ask me to jump in the water.  David, I miss you and love you!

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