Its about life and love and why

The Start

I find this to be slightly ironic. That I, who rarely confides in anyone, find myself spilling thoughts out here in a supposed public arena. I imagine somewhere some head shrinkers are studying exactly what it is about the internet that allows us to feel comfortable exposing our innermost secrets for anyone to stumble upon. In my mind its the fact that it feels like you’re talking to no one and everyone simultaneously, and you can decide which depending on your mood. Maybe part of it is that I’m my father’s son. He felt called to blog honestly about his journey this past year. That transparency has amazed me. It has also helped me feel connected to him when I can’t physically be there.  So I guess my hope is to do the same. To write honestly about my thoughts, emotions, ups and downs, and everything in between for anyone who cares enough to read. If you didn’t know, my dad needs a liver transplant. So I’m giving him 60% of mine.

It was almost a year ago today that this all started. I remember because I was about to head off on a retreat with the Pharmacology Program. I remember that mom had called and left me a voicemail. This was weird because normally our conversations start with a text and even missed calls rarely are accompanied by a voicemail. I listened to the message from my lab, “Hey honey, It’s mom. I’m in the hospital with dad, give me a call when you get a chance. Love you.” My heart jumped to my throat and at the same time that my stomach dropped through all 19 floors of our research building.

My dad had been diagnosed with non-alcoholic fatty liver disease (NAFLD) a few months before, but the disease tends to have a gradual onset (if it even gets worse) so there shouldn’t be any need for panic… Unless you really really know my family. I told my cousin Stephanie the other day that sometimes its hard to gauge the reality of the situation. See, dad takes after his side of the family where one bad touch of the flu and people are starting to talk about when to pull the plug. Mom on the other hand, “they’re having a tough day” could mean someone had flat-lined and then been resuscitated with a defibrillator.

I called back to find out what was really happening. Dad had gotten sick while my parents were in Florida on vacation. A similar event had occurred the month before and a  short hospital stay put him back in balance. This time was different. From what I gathered he was sick again, but this time the doctors thought it was serious. One doctor said his liver was “useless” and if he didn’t get a transplant in 48 hours it was over. I cried. Thank God that idiot was wrong and by the time I was leaving for the retreat it was clear dad would make it home and we weren’t in an emergency situation.

Still it was confusing. I remember feeling dazed while at the retreat center. If you’ve ever had a concussion (somehow I’ve managed two from baseball), it was kinda like that. I knew things were happening around me, but whatever was happening seemed to go about 100 times more quickly than I could comprehend. I kept wandering off during breaks to be alone. The weather was beautiful. Gorgeous sunshine rained down on patches of new flowers. I appreciated that. Nice weather always makes me feel better. Not quite better enough to overcome my emotions though. I was sad, scared, angry, and mostly confused.

Confused as to how this could be real and happening to my dad. This was a young man, full of life, who had recently set out to start his own church. He had a vision of reaching out to people that a church institution wouldn’t connect with. People who were lost to the world. How could God let this happen now? It didn’t make any sense. I spent a lot of time talking with him about it. God I mean, not my dad. Asking him why this was happening? Pleading with him to give me understanding and begging him make it go away. Over the year I’ve still spent a lot of time having these same conversations… Although that’s not entirely true. I’m sad to admit that sometimes I don’t really talk to him. Its not that I don’t believe he’s there, or think he’s not listening to me. Its just that its a relationship. One in which he’s perfect and I’m oh so deeply flawed. I get frustrated with him, and I punish him by withdrawing. Yea that’ll show him! It doesn’t. It just makes me feel alone. I decide since he hasn’t healed my dad yet its time for me to be in charge. That hasn’t worked out either. Eventually I decide to talk again. I come running back crying, saying “This is too much for me. Too much.” He acts as though nothing has happened and welcomes me back. The beauty about having a relationship with this unfathomable higher power is that he’s always perfect and I’m always not. When I can admit that he doesn’t hold it against me. It’s been a long year, but faith has brought me through it.

Back on the hillside of the conference center as I prayed I suddenly had this feeling. Like there was a way to make it all go away. Before the retreat I had read up on transplants (a perk of being affiliated with the medical school). As it turns out, brilliant surgeons and scientists have figured out that a part of the liver can be taken from a live donor and given to a recipient in need. Being a nerdscientist I am fascinated by the process. Can you believe that the donor’s liver grows back to almost 100% in 3-4 weeks? And the piece in the recipient becomes a fully functioning organ? What!? As I sat there praying somehow I knew even then, that I would be that donor. It wasn’t something I wanted to talk about to others. It was weird. It still seems weird. That’s just the nice way to say it. It was crazy. That’s what I tend to think of people who say “God told me blah blah blah”. The blah blah blah is the part where I’ve already stopped listening. It’s not that I don’t think God doesn’t still tell people things. Unfortunately, I think some well meaning people can be a little over zealous about what “God told them” and make the rest of us skeptical. Maybe the reality is that I should spend more time listening and less time talking.

Crazy or not, this week I received official word that I’m “an acceptable donor” for my dad. Last April we didn’t even know his blood type. Turns out its A+, just like me (I have always been a perfectionist). Was it just a coincidence that I had this feeling that I could be his donor? Was it God showing me things would be alright? I dunno. Don’t know don’t care. My God is great and he has a plan. If this wasn’t part of the plan then I would be ready to trust in him for whatever was.

This is already way more than I intended to write and milkshakes are calling. I think I’ll wrap the first post here. A year ago I was scared, angry, sad and confused. Tomorrow I leave for the same retreat. At the moment I’m still confused, but I have a feeling that is often apart of our lives no matter how old and wise we may become. I’m learning to deal with it and enjoying the fact that amongst the confusion, today I’m content and hopeful as well. More to come later.

 

– Josh

 

19 responses

  1. Jen

    Thanks Josh for your nerd-scientist view point & I love that you can give this gift not just to your dad, but to all of us!! We are here to support and love you and your family through this and we also are hopeful! What a beautiful 60%!!
    Jen

    April 27, 2012 at 7:42 pm

  2. Abby

    “Turns out its A+, just like me (I have always been a perfectionist).” Best line ever. I’ve been reading your dad’s blog for years and I hope you keep writing because you have that same captivating writing style. I’m praying for you and Pastor Scott. Thanks for writing!!
    Abby (Marstaller)

    April 27, 2012 at 10:06 pm

  3. You is kind-You is smart-You is important ! and pretty darn adorable too. Bet your Dad was a blubbery(but very proud ) mess reading this : ) Love Auntie Glory

    April 28, 2012 at 12:03 pm

  4. Um, just wow. Tears, you KNOW that. I cannot yet speak of the gift and sacrifice you are making to give me the chance to live, to hear, “CHRISTMAS! WOOOO!” at 5:00 am Christmas morning. I want to spoil my grandchildren and make Shara and a couple as yet unknown wives scold me. I want to live milestones. Your gift makes that possible.

    You amaze me, buddy and I love you beyond what you can comprehend.

    You sure do have mom and I pegged! We both laughed and nodded. I just pray I don’t have many of mom’s “tough days!” Plus, I’ve told everyone to keep your Aunt Glory away from the plug!!! haha

    April 28, 2012 at 4:18 pm

  5. Awesome, Josh. Just awesome. Thank you. Please keep writing. You have such a gift.

    April 28, 2012 at 5:54 pm

  6. Kim Russell

    Awesome! Please keep writing.

    April 28, 2012 at 6:28 pm

  7. heather

    Josh I have been following your Dads blogs for a while and will enjoy following yours as well I am from the group he belongs to the liver group .A blog is a wonderful idea your Dad has helped people understand what is ahead for them and how to manage feeling towards this We also are going to see from your side the son and now the transplant donor you guys are in great hands I read your Dad loved riding his bike at one point I made a comment once that after this is all over and done the two boys with the new livers new life new love for life should rent a bicycle built for two ………………. Good luck be strong Heather Mcconkey Canada Ontario

    April 28, 2012 at 10:03 pm

    • Sounds like a plan to me. Thanks for your encouragement.

      -J

      April 29, 2012 at 4:01 am

  8. Linda Draddy

    By blogging this to all of your friends, it lets young people know that they to can save a life by doing the right thing…..medicine is so advanced…I was with a couple yesterday…Mom gave a portion of her liver to her 2 year old son….undiagnosed liver disease..docs said it would never happend again so they had a daughter…guess what..it did…last December daddy gave a portion of his liver to baby Alyson…..they all are very healthy and happy…
    You sound like a wonderful son. I had my liver transplant almost 9 years ago,,,many prayers for you and Scott and a wonderful future

    April 29, 2012 at 12:21 am

  9. Bill The Redsfan

    Josh, this is your Dad’s friend Bill from West Virginia, I see that Reds hat has really made you quite the writer, hope it rubs off on Dear Dad. I have only been wearing this Red Sox hat a few days and I already told a Yankees fan he sucks, I hope Pastor Fred forgives me.

    Bill Pinson

    April 29, 2012 at 1:18 am

    • Thanks Bill. I just unwrapped my Reds hat today. Isn’t that the beauty of grace? That God can forgive Yankees fans even though I can’t 😉

      April 29, 2012 at 4:00 am

  10. Amy Pinson

    Josh,

    You don’t know me, but I am Bill Pinson’s wife. I just want to say to you that you are an awesome young man. I can’t wait for this miracle to take place for you and your father. God has truely blessed you both!

    April 29, 2012 at 2:15 am

  11. Steph-a-niece

    I am in awe of you for having the courage and faith you do. Weird how not too long ago we were at North Conway laughing over the silliest tennis match ever and now we are looking to a summer of recovery for you both.

    I felt helpless when Uncle was diagnosed. Until we could volunteer as donors. When I told people I was volunteering and if I was a match I would donate my liver, people looked at me like I was crazy. Weird thing was – I was totally calm about it. It was not even a question and I considered it more of an honor than a sacrifice. The reality must be somewhere in the middle – maybe I was crazy to offer it up but being able to help Uncle in anyway is an honor.

    All of a sudden I feel helpless again. What can I do from so far away except be pushy about getting my questions answered immediately!!! You take after your parents, I take after mine ; )

    You are amazing. Uncle is amazing. Together, your livers will be amazing. I can’t wait for this all to be done so we can play tennis again and laugh the entire time. Can’t wait for more Faux Christmases to do a $5 gift card exchange and answer trivia questions about Christmas that only my mom would ever think to ask about.

    Love you and our craziest family so much…

    April 29, 2012 at 2:50 pm

  12. Barbara Nelson

    Thanks Josh, you are a blessing !! I am so proud of you. Your words are telling me you are so full of the Trust and Faith that makes God happy. He is in charge and he is so ready to help you and your Dad with this journey.. God does love you and so do I. Love Aunt Barbara

    April 29, 2012 at 3:43 pm

  13. Hal Cushing

    I left my Mets stuff in Florida, so I am getting out my Sea Dogs hat to wear. We will continue to pray for you guys daily.Hal and judy Cushing

    April 29, 2012 at 7:09 pm

  14. Dang. I didn’t have time for this. But when I got snagged in the grip of a good–really good–read, I just plowed ahead. With delight. I agree with Abby that your writing has “gene pool” written all over it. Have prayed for your dad and will continue. And for you both on May 7. It’s just a cyber friendship carried on the back of comiseration. I have 4th stage prostate cancer, a slow moving monster, so I’m saving his insights and expressions for the day I wilil need the help in blessing others while they mope around to encourage me.

    April 30, 2012 at 7:33 pm

    • Thanks for reading and thanks for your prayers. I’m looking forward to the 7th. Glad you and my dad have crossed paths and it sounds like you may share some of his humor and viewpoints.

      I know this is a long shot, but has your doctor had any mention about ultrasound as a potential treatment? Its still very early, but going to clinical trials with some good early success. I wish you the best!

      May 1, 2012 at 7:26 am

  15. Julie Goodwin

    I am refreshed by your honesty.
    Had to laugh about the how to interpret the illness…Dad’s side point of view and your Mom’s.
    I am closest to your Mom and am truly blessed to call her my friend. She is the one that I feel called to care for, check in on, allow her a safe place to talk. She is such a friend and I love her.
    Josh, when you and Dad are in surgery, I will be praying for both of you. But please know that I will be praying for your Mom too, as two men that she loves are doing what needs to be done.
    Free pie for you when you want some.

    May 1, 2012 at 8:17 pm

  16. Wow. Writing my book and am now at the “Josh section” so I’m rereading your blog. I know it moved me last year but now, Encephelopathy-free, I comprehend so much more clearly what you went through. And now, I will be able to pronounce you and Kristen “husband and wife” in just two months because of the love you showed for me. Just wow. No real words. The bicycle thing MUST happen!

    May 25, 2013 at 2:36 pm

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