Friday, February 1, 2019

Wrapping my kids in bubble wrap... or not.

It's hard to put into words how the last few weeks have wrecked my plans for order, simplicity, and quiet.  How, in some ways, the last few weeks have been better than I could have orchestrated.  How they have been harder than I would have requested.  But what has been... has been.  And I believe with all my heart that the Lord of my life holds my days and my loved ones in His very capable Hands.  That the same Hands that formed the stars also designed my children's bodies and hold my very raw heart.  And with this knowledge, I have hope!

Since my last post, we took a few weeks to coast, enjoy the Christmas season, and play a ridiculous number of board games with our littles.  Since my last post, the dishwasher has bit the dust and the furnace has frozen... multiple times.  Water has leaked through my living room ceiling and my pipes have frozen.  Since my last post, friends have prayed for my sanity, my safety, and the outworking of my salvation.  It's been a January to remember for sure.

On Wednesday, Caleb was scheduled to see a pediatric ENT (ear, nose, and throat) specialist at Riley Children's Hospital in Indianapolis.  Wednesday was also a day for record cold temperatures here in Indiana with the windchill being -50 degrees and below during the day. Leaving David at home with the youngest three (including the two girls with strep infections), Caleb and I bundled up in layers, loaded blankets and water into the van, and drove the hour and a half down to Riley for this specialist's appointment that we had been urged strongly to keep.

By the grace of God, we had no driving problems.  The van started every time!  And even though I wasn't sure of where I was going, we parked in the right place, were able to walk indoors to the outpatient center, and made it to the correct office on the first try.  That alone filled my heart with gratitude!

We met with this new doctor for quite a while.  He and a surgical student took a long look at Caleb's ears and thoroughly processed his medical history and past surgeries with us while also reading Caleb's previous ENT's charting. He was attentive to detail, patient with questions, and great with Caleb. Without batting an eye, this doctor just seemed to scoop Caleb's case up and formulate a plan.

If all goes according to the new plan (and that's a big if), the surgeon will start with the left ear (the same ear that had the previous surgeries). Caleb will have a mastoidectomy to remove his mastoid bone and allow the surgeon to reconstruct his ear canal with full access to remove unhealthy tissue from the ear.  Afterwards, Caleb will have a two-week period of rest and low activity as the beginning of a six-month recovery period in which his hearing in that ear will be negligible. This waiting period is necessary to allow swelling to go down before the surgeon goes back in to correctly place the prosthetic ear bones that will allow Caleb to regain full hearing function.  Three months after the left ear has had time to heal, we'll start looking at a surgical plan for the right which may be similar to the first.

I told a friend today that it feels like we just buckled up our seat belts for a much longer drive than we had originally thought would be necessary.  Caleb is struggling with just the idea of more surgery.  The recovery last time was painful and hard. And even with the surgeries, he won't be swimming for at least a year.  Just typing this makes my eyes water.  Something about jumping into a pool is just so inherent in being 10 years old, living wild and free.

The surgeon plans to do the first surgery as soon as possible, probably within a month. My logical side rejoices that there is hope, another option, and an extremely qualified doctor to walk us through this process. However, my maternal instinct wants to slam on the brakes, pull all of my children into my arms, lock the doors to my home, and never let anyone leave until I am guaranteed that none of them will have to experience pain, especially recurring complicated surgeries. In moments of strength, I can calmly talk my oldest through the problem of pain in this broken world, but my mom heart would really prefer to bubble wrap each of my kids and solve their physical, relational, and emotional struggles with a magic wand. So sometimes we talk about God's strength shining in our weakness, and other times we just sit and cry with our kids and say, "This just stinks."  It's like a pendulum swinging back and forth as we choose whether to trust what we know to be true or what we feel. And as I type these words, I'm just going to admit that my feelings are winning today.

Many days this year I have felt like my dreams and aspirations are buried under grocery lists and laundry piles.  Where the few things I want to do just because I am Krista are the lowest priority because what is necessary for the moment is urgent. Just when I think I'm getting a handle on the housekeeping, a leaking furnace causes me to have to move every plastic tote from my attic to my living room. Just when I think I might be able to finish reading that book, a child walks into my room with a fever or a rash.  Today, just the act of choosing what task to start first caused my anxiety to skyrocket, which is not the norm for me.

As everything feels like it is spiraling out of control, I want to grasp for control of something.  My house. My children. My husband. My church work. My friendships. My food. I have to...have to...have to lay all my hope in the same sentences that began this post.  What has been... has been.  And I believe with all my heart that the Lord of my life holds my days and my loved ones in His very capable Hands. That the same Hands that formed the stars also designed my children's bodies and hold my very raw heart.  And with this knowledge, I have hope!

There's more to write.  More about Ben's progress in vision therapy.  About Laura turning 6. About Emmie Jo starting preschool at home. About new dreams and possibilities for the future. And hopefully I'll have time to write more soon, but it's time to pick up the kiddos from school and then finish a very competitive game of Ticket to Ride.  Thank you for loving our family and caring enough to read through all this!  It's a privilege that we get to do life with each one of you!

Thursday, December 20, 2018

Where do we go from here?

We thought Wednesday would be a day to plan with Caleb's ENT surgeon.  I thrive with plans, concrete evidence, educated predictions, and expert recommendations.  Instead, on Wednesday we were greeted with the words: "This may not turn out the way any of us had hoped."

Apparently the tissue that the surgeon encountered on Friday during Caleb's unsuccessful ear tube surgery was unrecognizable to him.  He wasn't sure if the swelling was caused by an allergic reaction to the packing material that they used after Caleb's first surgery or if it's some kind of unhealthy tissue (cholesteatoma) like Caleb had had in his outer ear (although he said it didn't look like any cholesteatoma he's ever encountered).

According to the surgeon our best option is to wait 6-8 weeks and take a look at the left ear again to see if the inflammation has gone down.  In the meantime, he thought a referral would be in order to check with another ENT for a second opinion.  This of all the things we talked about was the most discouraging to me. This other ENT doesn't have any special training that our current surgeon is lacking.  He is just another set of eyes and ears who might have a new idea or just confirm the path that we are already on.  As a mom, that makes me feel like our current doctor feels tapped by the puzzle of healing my son's hearing.

Caleb was tested to see if hearing aids would be a good temporary option.  While he is on the border of needing them, his current small classroom situation made the audiologist and the surgeon opt out of the hearing aids. 

So what does all that mean?  Well, no swimming :-( and very careful showering as we do not want any new infection to take up residence in his already unstable ears.  It's looking more and more like any future surgical options may be over the spring and summer (hear: baseball season) so Caleb has to grapple with the reality that he might only be able to train with a team and not actually play in a game. And David and I need to make a decision about a second opinion.  We trust our surgeon, but the fact that he wants us to get a second opinion makes us wonder if more information would be helpful. 

I'm not worried about Caleb's schoolwork.  I'm not worried that he'll fall behind, but I do worry about how I see him retreating from people because it's work to focus and really listen to other people.  I'm concerned that he seems more and more able to tune everything else out and read while he used to be so quick to jump into the activities that were going on in our home.

My prayer requests are:

  • wisdom for David and me to know next steps
  • character growth for Caleb, that he will grow in being attentive, compassionate, and loving through this trial
  • HEALING for his ears, resolution to the inflammation
And in the midst of all this, our hearts really are at peace, which shocks me because WE HAVE NO PLAN!  For those of you who know me personally, you understand how amazing that truly is.  And thank you!  Thanks for the texts, the emails, the calls, and the face-to-face "How's it goings??"  We know we are blessed to live in a community that truly cares!