Friday, September 7, 2018

Say What?: The Autumn We Never Heard Coming

It's been forever since I sat at this computer and typed out anything coherent besides quick emails and facebook comments.  It feels a little foreign yet so good to be able to think out loud through the keyboard and tell a piece of the Grander Story that God is telling in our family's life, but I'm getting ahead of myself.  Let me share with you one of my pet peeves from the summer...

Setting: Me and four kiddos in the van coming home from the day's event.
Ben: What are we having for supper?
Me: Grilled chicken, salads, and watermelon.
Ben: Yum!
Laura: I don't like chicken!
Caleb: Hey Mom?
Me: Yeah, Caleb?
Caleb: What are we having for supper?
Me: (pulls hair out and refuses to answer any more questions)

And this same conversation happened all. summer. long.  And not just because my grilled herb chicken recipe is one of my all-time favorite foods.  Every car ride.  Every time someone asked a question, Caleb would then ask the same question about 3 seconds after I answered the first child.  I was beyond frustrated.  Come on!  You're 9!  Listen!

Finally one day I was sitting next to Caleb on the couch, whispering to him about something, and got zero response. Like none.  I tried to whisper a joke.  No response.  I whispered bizarre promises involving millions of dollars and professional baseball games. No response.  Since he was done with a recent round of antibiotic drops from an ear infection, I called his pediatrician who immediately got us into the ENT (ear nose throat) doctor for a check-up.  I was thinking it would be another set of ear tubes (which would make 8 sets for my children collectively) or a wax plug that the doctor would remove.

But I was clueless.  The doctor used a microscope to remove unhealthy tissue from both of my son's ears and explained that Caleb has an extremely rare condition called cholesteatoma in both of his ears.  In simple terms, at some point, Caleb's ears started rapidly growing unhealthy tissue to try to cover the hole left by his ear tube.  The tissue would die, shed, and fill up the ear canal and was very prone to infection (which we had seen all summer long since swimming season began). Also, it was putting pressure on his ear drum in his left ear, causing the ear drum which should puff out to cave into his Eustachian tube in his left ear.  In order to restore Caleb's hearing, Caleb would need a double tympanoplasty, which involves the surgeon taking a muscle graft from behind the ear to construct a new eardrum in his ear after all the unhealthy tissue is removed.  Our ENT is wonderful and admitted that he could do the surgery, but he had an associate who specialized in this condition and the operation in question so he referred us to his associate in Fort Wayne.

Before leaving that day, Caleb completed a hearing test with an audiologist who confirmed that he had mild to moderate hearing loss in both ears.   We were also forewarned that this was not an easy, quick operation.  The tympanoplasty will most likely be two hours long for each ear and will be a much more involved recovery process.  In addition to caring for the graft sight and not being able to hear from the ear operated on for about 2 months, Caleb will need to stay still for 2-4 weeks following the procedure.  Umm... can we stop here for a second?

Caleb is 9, almost 10. He loves baseball, football, and any game involving running.  After the surgery, he is not supposed to be involved in any kind of high activity games.  No jumping. No running. No wrestling.  No swimming.  He can walk, sit, and eat.  Every 9 year old's dream, right?  This was the information that broke my momma's heart most.  Long surgeries aren't fun, but long recoveries...devastating to a kid who is NEVER down for long.

I left the ENT trying to wrap my mind around the procedure and talk my very grumpy son back from the edge of ingratitude as he grappled with losing 8 gym classes.  Amazing how fast he calculated exactly how many it would be. Man!  He's good at math.

My son goes to an incredible school that cares for his heart and his mind.  As I tried to figure out what our lives would look like this fall, I called the school to get Caleb's teacher's phone number so we could talk through logistics.  The phone in the office rang and rang until my friend picked it up.  It wasn't her job, but she was there and she thought whoever was calling might really need something so she graciously answered the phone and immediately could tell from my voice that I wasn't okay.  I shared with her about Caleb's surgery, and she immediately said, "My son had that same operation with the same doctor! I can tell you all about the recovery, and my son can even talk to Caleb and show him the scar."  Oh my goodness!  I hung up the phone feeling grace and peace wash over me like a flood.  My God knew exactly what I needed to hear.  He knew I needed to talk with another momma who had been there and done that.  He knew I needed to remember that He was so very present in that moment.  One of the things that also came out of that conversation was learning Caleb would not be able to go to recess and really should be kept still.  I confessed that I was considering homeschooling him for the two weeks of recovery, and my friend confirmed that this would be a wise option.  She hung up the phone having encouraged me and given me Caleb's teacher's number so I could chat with her later. Grace upon grace.  But get ready for more...

When I connected the next day with Caleb's teacher, she let me know that she had special training and experience in deaf and hard of hearing education and would be incorporating tools in the classroom to make sure that Caleb didn't fall behind even as he struggled to hear. Beyond blessed.  There is only one fourth grade class in my son's school and it JUST SO HAPPENED that his teacher was specially equipped to meet Caleb's needs in this season. Thank you, Jesus!  She affirmed our decision to homeschool for his recovery weeks and to help us transition him in and out of the classroom well. Check and check!

Now to tell Caleb.  I really wasn't looking forward to this part, but several close friends and one sweet assistant principal promised to pray, and the results were beyond my expectations.  Caleb handled the news of his long recovery at home with grace and a sense of humor.  He wasn't thrilled about not going to school, but he was smiling as we shared with him the many ways God has already made a way for his hearing to be restored and for this year to be one of blessing rather than hardship.

Two weeks later, we went for a CT scan of Caleb's temporal bones and a consult with the ENT who specializes in tympanoplasties.  He decided to wait on the right ear and only plan a tympanoplasty for Caleb's left ear.  He was beyond kind and personable and answered all of this momma's questions.  We feel total confidence that we are where we are supposed to be for this procedure.  So on September 19, David, Caleb, and I will be driving to Lutheran Hospital for Caleb's new ear drum graft.

To the friends and family who have heard us process and share our amazement at God's grace in saving Caleb's hearing, thank you for listening.  Every time I share the faithfulness of God allow us to catch this before the unhealthy tissue did more damage, to grant us friends who have been there, to give us school support like no other... I am reminded of His intense, personal love for me.  My heart beats joy and peace as we look forward to surgery and still peace and joy as I think of having my biggest boy home for 2 weeks.  The days may be long, but I know the years are short.  I'll take one-on-one or one- on-two (with Emmie) time any time I can get it.  If you don't see us out and about, it's because we are home, keeping Caleb in a low-risk environment where he won't be pushed or jostled accidentally.

Several have asked how they could help or what would be entertaining to Caleb during his recovery so here it is: pray.  Pray that the graft heals properly and the infected tissue is removed successfully. I know that my God can be glorified even if these things don't happen, but my momma's heart desires a completely successful procedure.  Pray for our family's relationships through this season of focusing so much on one child.  Pray for his siblings as they seek to love him without the usual full-body hugs and wrestling fests.  Pray for us to reflect Jesus in this process.

Nitty gritty stuff: if making egg-free, dairy-free food is in your wheelhouse or making an Aldi run is your gift, your help would be welcome. Not sure how easy it will be to get out of the house or how time consuming this recovery will be for me as momma.  If writing encouragement notes is your gift, I would love to collect notes from family and friends so that Caleb had some sunshine for each day of his recovery.  Also, if you are good at playing board games, Caleb would love to have someone new to whoop at Monopoly or Catan.  Kid friends are welcome to visit and play board games if they understand that Caleb cannot be touched, high fived, or hugged.  Depressing, I know.   If you don't have my contact info, just let me know in the comments and I'll make sure we connect.  But most of all, would you pray?  I'm prone to anxiety yet amazed by God's peace protecting my heart and mind from discouragement and fear.  And thanks.  Thanks for being the Body of Christ who walks with us in the sunshine and the rain. It's an honor to be a part of this community.

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