Connect
david click
  • Home
  • About
  • Video Trailers
  • Blog
  • Maps
  • Music
  • Contact
  • Store

FIFTEEN YEARS IN

7/5/2017

17 Comments

 
Picture
 Fifteen years in since we answered the call. Fifteen years in since we picked up the phone to hear a Cincinnati Children’s Hospital neurologist change our lives. We barely knew her at the time, though she already knew our future better than us. She knew our hopes, dreams, and lives would never be the same. She knew the progression. She knew the heartbreak. She knew the pain. We just listened….in utter disbelief.
 
“Your son has Duchenne Muscular Dystrophy.”
 
Silence.
 
Every Duchenne parent remembers the call. Ask them about it, sometimes, and I guarantee you will witness a snort of incredulity followed by a shaking head, a deep breath, and faraway eyes. The call changes everything. It is stunning. It is unbelievable. It leaves you speechless, numb, and confused. It prompts denial. It suspends time.
 
Excuse me? Duchenne what? There must be some mistake.
 
Our call came on July 5, 2002, ironically the day after we celebrated Independence. The Children’s Hospital neurologist told us she knew about the diagnosis a couple days prior, but withheld the news because she did not want to ruin our holiday. Gee, thanks. With one call, our lives changed, our dreams evaporated, and our hopes vanished. The rest of that day was a blur, a confusing mess of realization and disbelief. I honestly cannot remember what we did other than sit and try to wrap our heads around what just happened. I can still feel the gut punch.
 
That day, dreams disappeared in a flash. Gone. Over. Done. The ones where I…
 
…caught my son’s fastball and then casually tossed it back,
…nodded my confidence from the bleachers before his crucial at-bat,
…encouraged him to “go long” before throwing the football,
…tested his shoulder pads with two fists before a big game,
…bumped against him as we battled one-on-one in the driveway,
…laughed with him around a campfire during a backpacking trip,
…steered a boat while watching him learn to waterski,
…tossed him the car keys and reminded him to not drink and drive,
…smiled with pride as he helped his sister move into her new apartment,
…thanked him for cutting the grass.
 
I could go on… The dreams were many, and sometimes still are.
 
Before the call, I saw Dad-hood like most Dads I knew growing up. I saw it through the eyes of my Dad and his Dad before him. I saw activity and vitality. I saw patient demonstration and loving expectation. I imagined sports, camping, fishing, boating, swimming, running, jumping, and climbing. I imagined Alex’s college, career, wedding, and children. I imagined everything life was certain to provide.
 
That all changed after the call. As we learned more about Duchenne, I imagined Alex…
 
…falling behind his peers,
…losing his ability to walk,
…using a power wheelchair,
…losing the use of his arms,
…losing friends,
…needing help to eat,
…needing help to breathe, and
…asking when he would die.
 
Fifteen years in, all of it has come true, just as I imagined, and then some.
 
But…it’s okay.
 
In fact, it’s more than okay!
 
With Duchenne, you see life from an angle you never would have otherwise. You see the preciousness of now and the beauty of togetherness. You thrive in the power of love and the healing strength of laughter. You receive sincere appreciation for always being there, be it sitting, standing, or sleeping alongside. You feel the strong connection of a loose handhold as well as the loving embrace of an armless hug. You absorb tears as well as heartbreak. You pick up your son as much as he picks up you. You give and receive absolute trust because you are his confidant, guardian, and best friend. You see bravery, in the face of Duchenne. You see your son, with eyes wide open. His and yours.
 
Rare gifts indeed.
 
When we hung up from the call, I feared life with Duchenne. I feared Alex’s inabilities, as well as my own. I feared its effect on him, as well as our family. I feared what he would be missing, and what we had lost. I worried about how we would manage the beast. I worried about the unknown and what I could not control.
 
Today, fifteen years in, we embrace it, despite what the monster may yet have in store.
 
We do so because we have one another…right now…
 
…and that’s all that matters.

17 Comments
Jackie field
7/5/2017 06:41:47 pm

Reply
Alison Healy
7/5/2017 06:49:26 pm

Thank you for sharing. Our son is now 15 and we found out his diagnosis when he was almost 3. He has 2 big sisters of which one is a carrier. We had a year of much sorrow when we were told, but one day someone said to us "only special people are give these very special children" from that day we have looked at our life a a blessing. We have a wonderful son and an inspiration to us with the things he can do. We don't see him any different to other children and is treated like my other children. These beautiful boys are an inspiration to all that meet them. <3

Reply
David Click
7/7/2017 10:53:56 am

Thank you, Alison! Our boys are special kids growing into young men. Alex sees himself no different than anyone, only he sits more. While the journey is difficult, our boys teach us much about what is important in life. All my best to you, your son, and your family! Thank you for commenting.

Reply
Louis Boyd (Louis Jr's dad)
7/5/2017 08:14:56 pm

What a touching story. Definitely hit home in all areas. Here lately I've been imagining him (Louis Jr) having his children and keeping the family legacy going. But as you say, it's just a dream. I also have a daughter who is a carrier so you know what that means. A very risky option for her but hopefully they have more treatments or a cure by that time as she's only 15. Louis Jr is currently 13. We've been here at Cooks Children for a week now. Sorry. Just rough when we're so spread out. Us parents dealing with This disease. We have yet to meet anyone in our city or Metroplex that has a son Louis's age with Duchenne. Thank God for family though.
My heart goes out to you and your family.

Reply
David Click
7/7/2017 11:26:38 am

My heart goes out to you and your family as well, Louis! Living with Duchenne is hard on everyone, especially our boys, but parents and siblings as well. I often write about the loss of a Dad's dreams. I do because I see my dreams everywhere, every day. It's hard. But, I try to focus on the moment with Alex and our family. Only then is Duchenne somewhat bearable. All my best to you, Louis, Jr., and your family! Nice to be friends with you as well. We share a common journey. Thank you for commenting.

Reply
Janet Smith
7/5/2017 09:57:21 pm

Our Jared's diagnosis came, 21 years ago. We were referred to a neurologist for seizures that were febrile and inconsequential. She however was concerned that at 20 months of age, he was not walking. He underwent a series of blood tests and when she reordered one (CPK), because of an unusual high number, I researched the causes. It didn't make the diagnosis any easier. But you are absolutely right. At some point, I gave in and accepted reality and learned to find joy in the life we have. Duchenne has helped us keep life in perspective, made us depend on each other, and celebrate the gifts we have.

Reply
David Click
7/7/2017 11:38:45 am

Like you have discovered, Duchenne offers us a beautiful life perspective. Despite the hardships of the daily grind, the moment pulls me through and propels me forward to the next. This iterative approach is the only way I can manage Duchenne. If I think too much about the future or the past, it bogs me down. Alex's smile and joy help tremendously, as well. All my best to you, Jared, and your family! Thank you for commenting.

Reply
Ivan Gonzalez
7/5/2017 10:05:27 pm

Thank you... this describes what I felt 2 months ago with my son's diagnosis and quite possibly what I may have in front of me w my 6 yr old son who has Duchenne... you're right we have each other and I will embrace every moment I have with him...

Reply
David Click
7/7/2017 11:59:10 am

Thank you, Ivan. I appreciate your comment. I remember our Alex at 6 yrs old, and in a way it seems like yesterday. I remember carrying him on my shoulders, even tossing him high in the air in the pool. Then, each future "stage" of Duchenne seemed so scary, so unreal, and so distant. For us, the progression moved so slow that we learned to adapt and absorb the "stage" into our lives, to a point where it became routine for our family and Alex (now 18). Don't get me wrong, I am not discounting Duchenne (note: I hate it with a passion). But, although the days of carrying Alex on my shoulders are long gone, sharing each day with him is beautiful and a privilege. All my best to you, your son, and your family on your Duchenne journey. Like you say...embrace every moment!

Reply
Exie Horn link
7/5/2017 10:59:38 pm

I received the news alone, as my husband was deployed with the Marine Corps, at 10:49 am on March 15, 1996, my birthday. My Curtis was a gift, a pleasure to be around and I was blessed that he called me mom. It seems like every major surgery was either on my birthday or the days before but he always managed to say happy birthday. To this day I do not celebrate that day.

His 2 sisters are not carriers nor am I. He was my baby....the last son in the family line. He was born on his Uncle Curtis's birthday. Two days before we lost him at 19, he was told that his sister was pregnant with the next Curtis, who was due on my Curtis's birthday (nope, doctor would not induce her because it was the first birthday without him.)
I thought that losing him would be the most difficult thing to do but I had to look the girls in the face and tell them that he was gone. I had to tell our son-in-law that he had lost his best friend. Then I had to tell his daddy on the phone that I could not get him to hang on until he got home, that his buddy was so tired and ready to go. The sounds coming across the phone are the sounds I will never forget because they took me to my knees. It has been 6 years and 23 weeks today and I am still on my knees.

My support group grew so small so quickly, within 4 months I lost my only son, my only brother, mom and uncle. Then both girls moved to different states with their military husbands as and took the grandbabies.

I am afraid that I will never get off my knees and I really don't care if I do.

Reply
Marina
7/6/2017 01:25:49 am

I know how you feel Exie.....i know how to be Marc's mummy so very well but I dont know how to be me xxx

Reply
Exie Horn link
7/7/2017 02:43:55 am

Marina
I don't want to be any more....

Suzanne Puleri
7/7/2017 11:21:02 am

Sending you love through the airwaves, along with an embrace from someone you do not know. My heart aches for you. Each soul who has moved on to the next plane would want you to get up off your knees and take just one step forward, I am sure. I'm going to say a prayer that you find the strength within to do this...sometime, when you are ready. 💞

Reply
Exie Horn link
7/9/2017 12:31:41 am

Thank you.....I do try but there are days that take everything to get out of bed.

David Click
7/7/2017 12:13:17 pm

Exie, my heart breaks for you and your family. It is evident from your words that Curtis was a beautiful young man, who will forever hold a special place in your heart. Please accept my deepest condolences.

Reply
john gagnon
7/6/2017 10:42:22 am

I remember the call and day as if it were today,Ian's doctor called at 6am on a jan. morning,I was to meet with a neurologist at the childrens hospital in Ottawa a 2 hour drive on slushy roads,i remember siting holding a paper the neurologist gave me to read as he described in detail what Ian's short life was to be,i remember the sound of one of my tears hiting the paper as I looked down at my feet where my little 4 year old angle sat playing with blocks, that day life as I knew it ended and I devoted my life to my son making every day count for him a year later I was raising my son as a single parent my devotion to him has only gotten stronger but the pain in my heart remains, my angle is now 10 and in a motorised chair, his legs no longer work and his hugs are beginning to get weaker but more powerful he is truly an angle, your post realy hit home with me thank you

Reply
David Click
7/7/2017 12:30:49 pm

Thank you, John. Your Ian sounds like a lucky kid to have a Dad like you. Although Duchenne affects our sons physically, I have found our emotional connection and support is so important to their self-confidence and life perspective. It's not easy. In fact, some days I really struggle, especially when I see the dreams I thought I'd once live. But, as Alex's mobility disappears, we make sure he knows we love him and would want no other son than him. Likewise, I try to remind myself of all I am fortunate to have in a son like Alex. When I do, I see life's beauty. All my best to Ian, you, and your family! Thank you again for commenting.

Reply



Leave a Reply.

    Archives

    January 2020
    November 2019
    September 2019
    June 2019
    April 2019
    March 2019
    January 2019
    December 2018
    November 2018
    September 2018
    July 2018
    April 2018
    January 2018
    November 2017
    October 2017
    August 2017
    July 2017
    June 2017
    May 2017
    April 2017
    March 2017
    February 2017
    December 2016
    November 2016
    October 2016
    September 2016
    August 2016
    July 2016
    June 2016
    May 2016
    April 2016
    March 2016
    February 2016
    January 2016
    December 2015
    November 2015
    October 2015
    September 2015
    August 2015
    July 2015
    June 2015
    May 2015
    April 2015
    March 2015
    February 2015

    Categories

    All

    RSS Feed

www.davidlclick.com

Copyright © 2015