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THE BRIDGE REVISITED

5/24/2016

20 Comments

 
Picture
Sometimes in life you face difficult conversations. When they happen, you can confront the discomfort or delay the pain. You can use words you’ve rehearsed for weeks or think fast on your feet and hope for the best. Either way, the conversations are never easy, for anyone. They are often painful, raw, and emotional. They require strength, perseverance, and sensitivity. They also demand patience because follow-up questions often emerge and must be answered no matter how tired you may be. Ironically, these conversations also have a positive side, which can make all the difference.
 
With Duchenne, you know the hard questions about life and death are coming, you just don’t know when. You know they’re inevitable, you just don’t know to what degree. You envision the moment of their emergence. You imagine the time, place, and general setting of their asking. You imagine yourself rising to the occasion, standing tall, tear-free, and delivering with love, patience, and understanding. You imagine your son listening, nodding, and smiling with acceptance.
 
With Duchenne, however, we have learned that life rarely happens as you imagine.
 
The bridge I had feared for years first appeared last October after a fun day watching the Cincinnati Bengals beat the Kansas City Chiefs, when Alex asked me if he would die before the age of twenty (
http://www.davidlclick.com/blog/the-bridge). The question caught me off guard and I did my best to answer him honestly. It was a tender moment between father and son (in a dusty parking garage, of all places), as Alex shared his innermost thoughts and concerns. While we drove home that day, I told myself that although the bridge had been crossed, more questions about Duchenne, life, and death were certain to follow.
 
They didn’t, and life with Duchenne continued onward along its familiar, unwelcome, and unwanted path.
 
Then, nearly eight months later and after a fun-filled weekend of relatives, a Dave Matthews Band concert, and an Angry Birds movie, the questions returned with a vengeance. It was as if Duchenne had been starved for attention and wanted to renew its havoc in our lives.
 
Hello, Clicks! Did you miss me?
 
My cell phone rang at 4:30 a.m. early Sunday morning, waking me from a deep sleep.
 
“Dad,…I need you! Something…weird…is happening to me!”
 
I immediately tossed the covers aside and raced into his room. Alex explained that as he played a video game, he could breathe in, but he could not push air back out. With a panicked expression, he described how air would only seep out of his mouth when he tried to exhale! I immediately recalled how Alex’s Pulmonologist, Dr. Sawnani, warned us that Alex’s lung strength continues to slide as does his ability to push and pull air in his lungs. Mixed feelings of concern, worry, fear, and guilt filled my brain as I calmed Alex and then positioned his BiPAP over his face and turned on the air. Once his breathing stabilized, the onslaught of questions began after their long hiatus.
 
At first, Alex asked me to explain why he had difficulty breathing. But after the technical questions were addressed, Alex quickly zeroed in on his primary and most vital concern.
 
“Dad, does this mean I am going to die soon?”
 
Immediately, I was filled with anger though did not show it. Damn this disease! No kid should have to think about dying! No kid should have to worry! Do kids with Duchenne not suffer enough!
 
“No, Alex, this doesn’t mean you are going to die soon.” I reassured, hopeful the sincere recipe I applied in October would suffice again today.
 
“Then what does it mean?” he demanded. “Why can’t I breathe normally?”
 
“Well, Duchenne, unfortunately, affects all muscles….” I began before he interrupted.
 
“Even my lungs?”
 
Deep breath. Choose your words wisely. Although Alex has heard Dr. Sawnani speak of breathing concerns before, Alex has been convinced for years that Duchenne only affects his legs and maybe his arms.
 
“Yes, even your lungs.” I answered honestly.
 
Say something quick to lessen the impact! NOW!
 
“But, we can help that by using your BiPAP more frequently.”
 
Alex expressed immediate concern, his voice sounding nasally as he spoke over the air being pushed into his nose.
 
“Does that mean I have to wear this stupid thing all the time?”
 
Hear him, but guide him. “No, but we need to wear it as often as possible when you are in bed…when you watch movies or play games.” Do I explain his likely future with ventilation? Do I share with him the strong possibility of a tracheotomy? .....No, not now. Those discussions will come with time. Focus on what he will understand. Focus on the positive. Focus on the….
 
“But, if I can’t breathe…will I die?” he cut to the chase. The hard questions were getting harder.
 
Oh Lord.
 
“No, if you need help breathing, doctors have other ways to help you.”
 
Alex grew silent as he searched my eyes for the slightest expression.
 
Am I saying the wrong thing? Am I saying too much? Am I causing worry?
 
“I don’t want that, Dad. I don’t want to be hooked up to a machine and tubes the rest of my life!”
 
You can do this. Acknowledge. Foster hope, yet prepare him for what will likely be his future, because it is clear he is seeking answers. Be gentle.
 
“It doesn’t necessarily mean that, Alex.”
 
“But, boys with Duchenne will need it, right?”
 
“Yes, some do.”
 
“Will I?” he pressed.
 
Although the likelihood is high, I deferred. “Maybe. Maybe not.”
 
Alex looked towards a window, clearly thinking. I could tell he wanted answers. He looked back to me, directly, and changed his line of questioning.
 
“Dad, does Duchenne kill?”
 
“Well, everybody dies of something, Alex. You just never…” You could immediately see his dissatisfaction as he rephrased.
 
“Will Duchenne kill me?” he asked point blank.
 
Still searching for a soft landing, I said, “Alex, nobody knows how they will die. We could be killed in an accident, we could be…”
 
“Dad, CAN Duchenne kill me?” he wanted the truth and would settle for nothing less.
 
Looking him directly in the eye, I then uttered the hardest, yet simplest, most honest word I ever have had to say in my lifetime.
 
“Yes.”
 
I immediately wondered if I went too far. Late hours and fatigue tend to expose your core thoughts, no matter how you try to control them. But, I also could see that Alex would not accept dancing. He wanted truth. Still, I needed to qualify my response…and quick, so as not to lose him.
 
“But, Alex, with Duchenne you never know. Remember my friend, Ian, who I’ve told you about? He has Duchenne and is 34 years old! He’s doing great despite his challenges. He is an author, a digital artist, and has a website! He’s an uncle! In fact, when Ian was your age, he worried about his lungs, too! But that was 17 years ago!”
 
Alex calmed slightly, but I could tell he was still leery of everything and needed more.
 
“I also have friends named Kitsune, Ricky, and Paul. They all have Duchenne. You should see all they do! Kitsune is 34. Ricky just turned 35. And Paul is 49! So, you see, Alex, Duchenne affects everyone differently. You’re only 17. You have your whole life ahead of you. Don’t worry about your breathing. We can help that! You can do the things you want to do and live a long time!”
 
You could see Alex relax a little. You could see him understand and reluctantly release his fear because he considers people in their 30s and 40s to be ancient. But, you can also see his concerns were still there, brewing and processing. The questions continued.
 
“Does everyone with Duchenne live that long?” He probed.
 
Again, I resorted to honesty. He deserved as much for living with the monster.
 
“Well, unfortunately, no. As I said, Duchenne affects everyone differently. Some die young. Some live a long time. You just never know, Bud. You just never know.”
 
Alex reasoned thankfully. “So, if I wear my BiPAP and take my pills, I’ll live a long time, too, right?”
 
“Yes, Bud. We must do everything our doctors tell us so we can live a long time!”
 
Alex then relaxed enough to not outwardly worry any further that night, seemingly satisfied with our discussion. Over the past several days, however, he has asked many follow-up questions about life and death. Each question seems to come with a new level of understanding and awareness. Each question also leads me to believe there will be more.
 
A difficult aspect of Duchenne is that as Duchenne’s physical destruction advances, your son matures emotionally. As his body weakens, his awareness strengthens. It’s an awkward passing. He no longer will accept measured and tailored explanations typically given to a child. He will no longer accept redirection as a means to change or avoid the subject. As he matures, he wants answers and he wants the truth. He wants you to speak to him as a young adult and no longer as a kid.
 
You’d want the same at seventeen, wouldn’t you?
 
As tough as it is to cross the bridge of facing our own mortality, I know his questions will only get deeper as we move forward. This current bridge is long and, from this vantage point, I see many more on the horizon. Strangely, the bridges seem to appear after happy and so-called normal times of life, if there are such things.
 
As you can imagine, these are difficult conversations to have with your teenaged son.
 
They are emotional.
 
They are surreal.
 
They are life with Duchenne…and they’ve only just begun.
 
So, about the positive side of this nightmare, because there is one…always…if you open your eyes to it. The breathing scare last weekend has reinforced to Alex that he must do everything he can to combat this unforgiving disease. Alex now wears his BiPAP every night, and often while playing video games or watching a movie. He takes all his prescribed medication without taking his usual “days off” he has been prone to demand. He realizes his sleep schedule may need adjusting, and asks to go to bed “earlier.” Hopefully, these positive behaviors will continue forward as his new routine.
 
The bridge revisited has also been bonding. We look to each other for support and cherish the many moments we live together, all things we should never take for granted though sometimes do. But, perhaps the most powerful outcome of this latest Duchenne episode has been both emotional and physical, as Alex now frequently asks for a hug before I leave the room. It’s almost like he is worried we may never see each other again.
 
It goes like this.
 
“Dad, can I have a hug?”
 
The question usually comes as I finish whatever parental task and then prepare to leave his room. The question accompanies his hands open and resting by his sides because he cannot lift his arms high off the bed.
 
I smile and reply, “You bet.”
 
I then bend down, put my head next to his, our chests together, and position my arms around him and near his hands so his wrists can then curl enough to complete the embrace.
 
I’m telling you there is no better feeling!
 
After several long seconds, we part. Alex then looks me directly in the eye and tells me he loves me…
 
…I smile, place my hand on his chest, and tell him the same.



20 Comments
Anup
5/24/2016 08:00:01 pm

Wonderful description of a tough situation. I am sure Alex will have a long n wonderful life.

Reply
David Click
5/25/2016 12:53:32 pm

Thank you, Anup! We do everything we can to support our sons!

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David
5/24/2016 08:48:15 pm

My "boy", no young man, is now 20. Just finished Sophomore yr in college. We (all) are waiting with bated breathe the FDA approval of eteplirsen, which would be a benefit to him. I wanted to say we have not yet had this conversation to this degree. Bits and pieces, yes. I am thankful you put so much detail. I will start considering his possible questions in light of Alex's questions. And I will definitely hug him more! Thanks for sharing.

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David Click
5/25/2016 12:55:52 pm

Thank you, David! I have found that as Alex looks me in the eye, it's as if he is saying "Dad, if I can't trust you to tell me the truth, who can I trust?" That alone helps to guide how I talk with Alex. Our sons deserve as much for what they endure. Wishing you and your son all the best!

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Deacon David Shea
5/24/2016 08:51:56 pm

David - I could feel your emotions, your angst and your fear; and more than anything, your love. Thank you for sharing.

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David Click
5/25/2016 12:56:55 pm

As always, I truly appreciate your support, Deacon Dave! Thank you!

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Uncle Rich
5/24/2016 09:20:30 pm

Dear Alec,
After reading this, had much to say and has I was writing, I felt this feeling, so instead of you reading it. I prefer to tell you in person.

Reply
David Click
5/25/2016 12:57:34 pm

I like the way that sounds, Richard!

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Patti Frank
5/25/2016 12:51:22 am

OMG! So very similar to recent conversations with my son Kevin who will be 17 in August of this year. More indepth questions and redirecting does not work like it used to. After the CBS news feature on Eteplirsen and my son listening to Austin (who we know) talk about living with a death sentence by 25,Kevin has demanded to know. We have had a similar conversation Dave, same about using the bi-pap (which we struggle with) and taking his meds (we usually don't skip) and doing the right things to live longer. It is certainly surreal. Thank you for your blog, it was right on and tugs at my heart strings. We have the same pulmonary doc at Cinncy too!

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David Click
5/25/2016 01:02:45 pm

Thank you, Patti! I appreciate your support! As I'm sure you know, our boys are now growing into men and they deserve to be treated as such. I would want the same thing if I were them at 17. Dr. Sawnani is one of Alex's favorite doctors. He can relate so well with the kids now young men. Often blunt, but with tenderness and genuine interest. Wishing Kevin, you, and your family strength and love along your Duchenne journey!

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ron link
5/25/2016 02:46:02 pm

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Katherine
5/25/2016 03:46:47 pm

First let me say how much I can relate when I read you blog posts. With respect to breathing please also look into non-invasive daytime ventilation, not a BiPap but something called sip and puff (in lieu of a trach). My son will be 30 this coming August and has been using sip and puff since he graduated from college. Would be happy to connect you with his Pulmonologist if you would like to explore further. I am also happy to answer any questions you might have.
Wishing you all the best,
Katherine

Reply
David Click
5/26/2016 11:28:17 pm

Thank you for your comment, Katherine! I am so happy that my blog posts are relatable. I have found that we (Duchenne parents) share many experiences in common, and it is nice to learn from each other. That said, I will definitely look into the sip and puff! I have heard of this, but was not certain if Alex was ready for it; I am now. All my best to you and your son!

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Laura
5/25/2016 05:59:20 pm

This brought back memories. My son has been in Heaven just over 5 1/2 years. He went to MDA camp almost every year and though they tried not to make a big deal about it there were boys who didn't make it back to camp each year. Josh knew it was a terminal disease from that. That being said it was right up there with Christmas as a favorite week of the year. My son's neurologist told us to answer each question to the detail asked for and see where it went from there. Josh was 23 when he died but it was because he was barely able to move and in much pain so chose not to use a trache, vent or sip & puff nor a feeding tube. We left those decisions to him and respected them. He had a beautiful ending with his favorite song on and peaceful. It is easy to want to hold on but if they are spiritually ready let them decide if they are adults. I have friends with the disease who are in their 30s on these machines and still happy to be alive. It is different for each person. Praying for you and your family and these others who are dealing with it as well.

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David Click
5/26/2016 11:36:24 pm

My heart goes out to you and your family for the loss of your son. As much as I have worried about crossing the bridge of talking about death, I have strong worries about THE bridge. So, thank you for sharing your experience. Your words have helped me to understand and prepare my son (and myself/family) for when that time comes. Thank you for commenting.

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Wendy
5/25/2016 07:01:37 pm

Well written and brought tears to my eyes. We have had similar conversations with my grandson (13) He won't let us tell his little brother who is also in a wheelchair(10). He always asks my daughter and me for a hug and my heart just melts! Thanks for sharing your insights! So hard!

Reply
David Click
5/26/2016 11:39:13 pm

Thank you for commenting, Wendy! I appreciate your support. Yes, Duchenne is hard on everyone. But, strange as it sounds, I have found much love through this horrible disease. All my best to you, your grandsons, and family!

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Phil Davies
6/8/2016 03:47:36 am

Your comments in particular regarding the hugs (rugby tackles he called them) hit a nerve with me. Benjamin would always ask for them. Often it meant bending down and positioning his arms around me. They meant the world to us all! We even had family hugs. Christine, Benjamin and I. They were special!
Sadly no more we lost him at 18. We and he knew his heart was in a bad way. He would ask about dying. I would answer that we all die sometime but we would be together again in heaven. We will one day.
In some ways Benjamin's learning disability meant he did not always understand all the bad stuff that was down the line and his passing has meant we avoided some of the difficult questions you have had. I do cherish the father / son chats we had. Your blog brought some precious memories back!
It's now a year since he went. God I miss him and his rugby tackles!!!!!!

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David Click
6/8/2016 01:24:29 pm

Thank you for commenting, Phil! Let me begin by offering my condolences to you, Christine, and your family for Benjamin's passing. Your words brought tears to my eyes reading of your rugby tackles and close father/son bond. I can feel your love for Benjamin; it sounds like he was an amazing young man! Wishing you and your family continued strength and loving, lasting memories. Dave

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