Sunday, October 27, 2013

Will You Still Love Me if I Show You Who I Really Am?

So last night, Jon and I attended a friend's Halloween Costume Party.  It wasn't just any party.  It was an over-the-top, feels like you're at Disneyland, type of party.  SO stinking fun.  Jon and I had RSVPed over a month ago, so even though he was just a few weeks post-op, he still wanted to go - if only for at  least a little bit.  

When we were in the hospital, Jon began brainstorming costume ideas.  He started out thinking a pirate would be the perfect fit - since he talks out of the side of his mouth like a pirate.  :)  Plus, an eye patch would be a great help to his already sore eye.  However, the more he thought about it, he decided the best match for him right now would be to dress as the Phantom of the Opera and have me dress as Christine.  :)  This was extra fun for us because we love that show, and have sung "All I Ask of You" at weddings at at concerts where we perform love songs.  We love it so much that we may or may not have watched the 25th Anniversary Special on Netflix in the hours prior to the party, just to get into character.  ;) 
What a perfect costume for my hubby with facial paralysis!  

Throughout the night, and even as we posted the pics on Facebook afterward, many people responded with, "Jon, you are such a good sport!  You have such a great outlook."  And you know what?  They are right!  Jon is such a gamer.  But it doesn't come without pain or sacrifice.  Jon and I have joined a private Facebook Group for those who have had a tumor similar to Jon's.  And we have received emails and messages from people who have had similar experiences.  What I have found is that it is very common for someone who has facial paralysis to go into "hiding."  To put their social life on hold.  To keep things very private.  We even watched a video made by the actor who played The Hulk on the movie "The Avengers."  He had a tumor similar to Jon's about 10 years ago, and he told his story and his journey.  He confessed that he didn't tell anyone other than his wife and a few close family members for awhile.  (several months)  He was concerned about the "stigma" that came with facial paralysis and/or possible outcomes after brain surgery.  
Let's be honest.  When someone has a face that looks "different," sometimes you wonder if their brain is "different."  By the grace of God, Jon has the exact same personality and intelligence as before his surgery.  But we all know our culture judges a book by its cover.  At least to begin with.  And when our "cover" is altered and has abnormalities, it really plays into our insecurities.  If we're honest, we all agree that Jon looks amazing!  His recovery has been incredible and everyone is so blown away by how great he looks.  We all would also agree that if it was US in that position, we would really have a hard time with it.  It would be a definite struggle.  And so when Jon shows up at Halloween parties or goes to drop our kids off at school with me, or goes on walks in our neighborhood, it's tough.  It's not far from his mind.  But he has chosen to push through the embarrassment, the uncomfortableness, the awkward feelings, etc.. and still live.  He does not want to hide.  

Jon has also decided to not just 'grin and bare it', but to actually laugh and choose joy in the midst of all of this.  That's how he can put on the Phantom mask and just laugh about the appropriateness and the irony.  It is also how he can laugh with our kiddos about his paralysis.  I will never forget the day the kids were coming to the hospital to see Jon for the first time after his operation.  Jon was genuinely nervous. What would they say?  How would they say it?  What would their childlike, unfiltered reaction be?  I took a moment to pull our oldest 2 kids aside before we walked into Jon's hospital room. I told them a little of how daddy was doing and what some of his side effects were.  They really didn't care, they just wanted to see him!  When we walked in, they were precious.  So gracious, so loving.  So gentle.  They hugged him and kissed him.  After we chatted for a few minutes, I asked Taylor, "What do you think?  How do you think daddy is doing?"  And she said, "Well, he's doing good. The only thing that is weird is the big cut on his head.  And his smile is like this."  And then she made a crooked smile.  She wasn't being rude or trying to be funny.  She was just speaking honestly.  Immediately, Jon started laughing.  Then Jackson.  Then Taylor and me.  We all just laughed and Jon said, "You're right, honey.  That is what my smile looks like.  Would you take a picture with me? With our matching smiles?"  
This picture will forever be a treasure to our family:

I remember I grabbed my phone to take the picture, fighting back tears.  Proud tears.  Tears full of love for the strength and grace my husband was displaying.  Taylor knew in that moment she was safe.  It was safe to be honest.  No one would be upset, give her a glare, or tell her to keep her thoughts or questions to herself.  No, this will be a family who embraces honest feelings, loves deeply, and extends grace.  And my husband found safety in that moment too.  Profound safety.  Even after some stares or honest questions.  There was hugging, kissing and even laughter.  Relationship had not been broken.  If anything, it was built deeper. 

I remember sitting that night and talking to Jon about what this would look like - for him to choose to not live in hiding.  He said, "I don't know how this is all going to go down. But I have people who loved me yesterday and I have to believe that they'll love me today."  And with that, the choice was made.  Live out loud.  

I can't help but look at Jon's example and experience and wonder what it would look like if we all embraced that type of authentic living.  We all have friends.  Family.  Neighbors.  People that love us.   We also all have junk.  Brokenness.  Insecurities.  What if we were courageous enough to believe that those who loved us yesterday, will love us today.  And what if we actually found deeper relationships, deeper community, more love - all through our authenticity?  That's what Jon has found.  That's what I have found.  Even on this blog.  More support.  More relationships.  More love.  

Jon's courage does not come easily.  It's a conscious decision.  He wars against insecurities.  But he has found it to be substantially more fulfilling than living in hiding.   Hiding out breeds fear.   Fear is crippling.  Living courageously honest in the world breeds life.  And healing.  And when we love those who are honest, we are healers.  Our roles in this world are profound.  

Friends, let's love and be lovers. Let's find healing and be healers.  
Let's live.  And live courageously.  


  1. God Bless you Deanna and Jon, so glad you are standing up to be seen and let others know you as you are...just the way God loves you! Your daughter Taylor is so cute to want to be just like daddy..she understands more than we think..I love your outfits they are great and are a true inspiration to all of us. you know when I was on chemo I lost my hair so I went out everywhere bald, and people told me what a beautiful head I had! I didn't like wigs of scarfs so went natural! So Jon, be your self and enjoy living with your family and friends, We all love you..God Bless..Lillian

  2. Thanks - again - for your vulnerability, humor, and truly amazing grace in the midst of this most difficult of situations. You are blessing me, and I'm sure I'm just one of hundreds or thousands.

  3. My husband Kelly works at mariners and told me about the news. I didn't exactly know who he was talking about but once I saw photos I realized it was your husband who was truly one if the KINDEST people I had ever met in passing when Kelly got hired on at mariners. He was genuinely so kind and interested in how we were doing without even knowing us. I am deeply inspired by your family's story. Thank you for sharing. There is so much rich content here that resonates more than I can even bear! Praying for your sweet family!

  4. Oh, Deanna. What a gift the Lord has given you in the ability to express your heart, mind and soul to others through this blog. I am grateful, as I'm sure so many are, for this ability. It's like a window and a mirror, all at once. You, Jon and your kiddos will cherish these entries for years to come. Keep on putting one foot in front of the other and living out loud. Not only for yourselves, but for all of us "out here" who are encouraged by your bold honesty and grace. Healing prayers continuing!

  5. Deanna, I have met you and your hubby a few times through Hume Lake and we have quite a few mutual friends. I began praying for you guys and following your blog, when friends posted prayer requests via Facebook. Just wanted you to know what a blessing your authenticity has been to me and that I will continue to lift your sweet hubby and family up in prayer. May He be glorified in all you do!

  6. So perfectly said. Thank you for sharing and living out loud with us!

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