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THIS TIME OF YEAR

8/11/2016

9 Comments

 
Picture
This time of year is forever etched in my soul. For over thirty years now, the smell of freshly cut, dew-covered, August grass immediately takes me back in time to a place of unforgiving coaches, crushing hits, and hard, sun-baked grounds. This time of year I can still feel bruises and aching muscles, skinned knees and elbows, and pounding headaches. This time of year I can still hear coaches bark HARDER! FASTER! AGAIN! and even DAG GUMMIT, CLICK!! THAT WAS PATHETIC!! This time of year reminds me how to push myself through incredible pain and fatigue to do it all again the next day. It reminds me of the purpose and value of picking myself up when knocked down, hitting back harder than I did before, and pushing through my burning desire to stop. When I recall my fondness for those hot, humid, and seemingly endless August football practices, I can’t help but smile at the values they instilled, especially as we live today with Duchenne Muscular Dystrophy.
 
Life with Duchenne is no fun…for anyone, especially for our boys. But, it’s a challenge for caregivers as well. Although I would not change my role as Alex’s caregiver for anything in the world, I’m here to tell you that caring for a boy with Duchenne is no picnic. There are no Bon-Bon’s involved, a good night’s sleep is foreign concept, and you don’t go home at five. Caregiving for Duchenne is performed around the clock. It taxes you emotionally and physically more than you would ever imagine. With Duchenne, you serve the needs of a child who has the brains of an adult and the body of an old man. Day after day after day…night after night after night.
 
Don’t get me wrong. Caring for Alex is both a privilege and blessing. As many can attest, he is an incredible young man with a heart of gold and a contagious smile.
 
But,…
 
It’s the constancy of Duchenne that wears on you. This disease is with you, your son, and your family all day and night, stubborn to leave and at times laughing at your fumbling inability to manage it. Sure, Duchenne may head to the sidelines now and then as life distracts you. You are certain to experience good times when Duchenne seems a distant thought among your family’s treasured moments like vacations, celebrations, or simply enjoying a meal together. But, rest assured, Duchenne is there. Having weaved itself into the fabric of your lifestyle, Duchenne never leaves. Be it lifting, turning, feeding, dressing, grooming, massaging, washing, wiping, giving, fetching, stretching, searching, positioning, explaining, defending, fighting, hoisting, helping,…you name it, Duchenne never lets up. All the while, the bully camps, spreads, and plots its next real estate grab on your son. It’s frustrating on many levels.
 
Alex gets this, as do many boys and men with Duchenne I’ve come to know. They see Duchenne’s toll upon their caregivers. They see the tired eyes, fatigued bodies, and dragging feet. They hear the occasional edgy voices, heavy sighs, and veiled frustrations. They get it, and wish hard they could do something more to help. However, they often have no choice but to ask. At times, the exchanges can be like pleasant negotiations where both sides willingly and happily meet in the middle. Other times, the conversations collide like two bulls in a china shop where tempers are short and messy and the needs are many and compounding. That’s just the way it is with a disease that never stops and nor cares of the havoc it creates. You just learn to live with it.
 
With Duchenne, it’s important to understand that as your son’s condition worsens, YOU the caregiver must strengthen mentally and physically. As your son matures, you must find ways to manage his increasing weight and immobility as well as his declining abilities to function and simply breathe. He needs you, and you know it.
 
It's an evolving awareness. In the early years, you become his legs and carry him often. You boost his confidence as he notices himself falling behind. You show him emotional and social strengths as he transitions to a power wheelchair in stark contrast to his peers. You learn competence with Hoyer lifts and joysticks, as well as ramps and unwieldy accessible vans. You adapt to ignorant and oblivious crowds, inaccessible sidewalks and storefronts, and friends’ inaccessible homes. You shrug off spilled drinks, wet beds, and stained clothes. You comfort him as the number of his visiting friends declines. You display strength, patience, and compassion when he looks to you for answers to life’s hard and difficult questions. You guide him through life’s changes and harsh realities as his Duchenne advances. In the latter stages, you learn the vital importance of cleaning his trachea, suctioning mucus from his lungs, and maintaining his medical equipment. Through it all, you become his confidant, cheerleader, and reliable go-to. You become his dependable ally, strongest fighter, and ultimate role model on how to live. He looks up to you and you cannot let him down.
 
You learn to do all this because Duchenne never stops. It’s relentless, and so you must be, too. You do it else get bulled over by the unforgiving monster. Duchenne ONLY becomes easier if you keep on grinding and tackle it one day at a time. And then do it again and again and again.
 
So, for me, I say thank you to my coaches Piper, Thome, and Bickel. Thank you coaches Focht, Tatman, and Beverage, and many others who have molded me through the years. I can still hear your loud, unimpressed, though encouraging, voices pushing me onward to do and be my best. I can only hope those hot, humid, and endless August practices have rooted somewhere deep within me.
 
I used to think this time of year was all about football. I used to think it was all about the game. But now, when I smell that fresh-cut grass, I know.
 
It’s about life and how we live it.
 
This time of year is my reminder to ALWAYS help my son…
 
…laugh,
 
…love, and
 
…live the life he’s dreamed!
 
Bring it, Duchenne.


9 Comments
Mimi Allman
8/13/2016 02:24:24 pm

Very touching and I totally understand being a caregiver to a Duchenne son. John was our first born and only son. He gave us great joy the almost 20 years we had him. He made friends easily and was fortunate to a friend who took him many places and even a road trip! Our 2 ⎌daughters had the usual sibling problems but loved their brother and were always there for him. Duchenne has visited us again with our grandson Andrew who is 20. His mother is our own lest daughter Beth and she and her husband are wonderful caregivers as well as older sister Katie. So I see their devotion, loss of sleep,etc.i think it is harder for Beth because she knows that Andrew's life will not be a long one which my husband and I were not aware of what all to expect with a shorter life expectancy. Andrew is a very special boy - very bright and talented artist. I know your Alex is also a very special young too. I think our entire family are better people from knowing our son John and grandson Andrew. God bless Alex and your family.

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Vickie Beard
8/14/2016 11:12:49 am

I have two adult sons with Duchenne 37 and 35 this year
You both me to tears with your rememberence of the time.
So well said Duchenne is always there in our lives times two

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David Click
8/16/2016 01:13:47 pm

Thank you, Vickie! Our Alex is only 17, so I can only imagine your daily life with two adult sons with DMD. You have my utmost respect. I am certain, however, your life is rich with love and perspective because of your sons. Please give them my best, and thank you for your support!

Denise Piehn
8/14/2016 04:21:57 pm

The Kilgore family are amazing!! So blessed to have them as friends and neighbors!💗

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David Click
8/16/2016 01:22:48 pm

I only know of the Kilgore's through Facebook. But, I agree, they are an amazing crew! Happy to know they have your support in their journey with Andrew.

David Click
8/16/2016 01:09:30 pm

Thank you for your kind words, Mimi. I believe you understand the Duchenne journey better than most having had John and now Andrew in your lives. And yes, our lives are so much better with these children. The perspective they bring, as well as the joy, love, and devotion, is beautiful to experience. All my best to you, your family, and your grandson! Thank you again for your support! It means the world to us.

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Margaret
8/15/2016 01:38:53 am

I would like to thank you for articulating exactly how I am feeling with a 28 year old son with Duchenne. Your blog has meant alot to me to know there are others who are going through the same thing. I have always thought of my son as relentless but I like your reference that Duchenne never stops. Each day I remind myself to take one day at a time.
Thank you so much for sharing your stories.

Reply
David Click
8/16/2016 01:32:47 pm

Thank you, Margaret! I appreciate your kind words and support. I started writing to share our journey with Alex, because his perspective of life is so beautiful. I did not expect the overwhelming support from the Duchenne community and friends across the country and across oceans. We share a unique journey. Like you, I have come to find much comfort in knowing others experience many of the same trials, tears, and joys with Duchenne. All my best to you, your son, and your family! Dave

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Roxanne Garner
8/23/2016 06:30:38 pm

Thank you for your letter. My son is 31 with Duchennes and you tell it well, my husband and I are our sons #1 advocates, but my husband has both of us I am a manefesting duchennes carrier which means I have weakness from duchennes the heart issues but We don't have time for that for We have to be strong like you for him

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