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Sometimes I’m Not Okay… and That’s Ok

Sometimes Friday comes around, and when Matthew gets home from work, we shake hands and introduce ourselves.  Does this ever happen to any other married couples?  It only takes a few days of work and collapsing into bed each night before the distance between our hearts starts to grow.  When we were dating, we could talk for hours on the phone.  Back then, we had to wait until 7 o’clock in the evening, when the “long distance” between Coatesville and Philadelphia was less expensive.  Yup.  When the time on the phone with him got excessive, my dad would highlight my conversations on our phone bill and I’d have to pay him back.   It was always worth it.  And it’s still worth the lack of sleep, to sit on the front porch to refill our emotional cups and reconnect again.  To get past the handshake stage and dig deeper.  If we only ever give each other the dregs of our day, this will eventually make us forget what it’s like to really know the other person.  Dregs are not as delicious or fulfilling as the freshly made batch of coffee or tea, or some freshly squeezed orange juice.  Allow your spouse more than just your dregs.

It’s been a tough couple of months for us.  I’ve actually been avoiding this blog.  Because I WANT everything to be okay.  I hate fake, so as to avoid writing truth, I don’t write anything at all.  But it’s been 11 doctor visits in 4 months and I completely broke down yesterday.  After our initial positive visit with Matthew’s specialist, things went slowly downhill.  He started to lose his voice and has had some sinus infections which have been incredibly persistent in nature.  Long story short, we are almost at a turning point.  Yesterday he had a biopsy taken of his sinus tissue to see if it is indeed Wegener’s flaring up again (bloodwork was iffy and inconclusive) or just a really bad infection.  Given the permanently scarred and damaged sinus cavity he has, from twelve years of surgeries and disease-damaged tissue, we know things will never be “normal” again.  It makes figuring out if a “stuffy nose” is something which warrants buying a box of tissues, or getting a round of blood work done.  I should call it LWW.  Life with Wegeners.  Remission is so fun, because this stupid disease is not the first thing people chatter to us about when they see us.  It’s awesome to feel “normal” and not like you’re wearing a t-shirt that says, “ask me how I’m feeling.”  Don’t get me wrong, we totally appreciate people’s concern for us, and how Matthew’s feeling.  But it’s so exhausting to be sick.  It’s lonely too, because you want to act like nothing is wrong, all while fighting something that is very wrong.  So I’ve somewhat angrily been avoiding this topic, because I’m so over it.  Wegeners took a back seat for two beautiful years.  It is never welcome, in my book.  Which is exactly why I’m not the one writing the story.

Someone close to us recently asked me how I was doing with Matthew being sick.  It kind of threw me for a bit, because I realized I’m not really okay.  I want to kick and scream and order a large pizza.  I’m jealous of people who can eat whatever they want and get a stinkin’ cold without worrying about it turning south.  I’m jealous of people who don’t have doctor visits flooding their calendar and drying up their bank accounts.  Then all of a sudden, I realize where I’ve gone wrong.  My eyes have completely turned from Jesus to the waves.  Like Peter, I’m sinking.  It’s not the first time.  These churning waves and I have met before.  They’re scary and ugly and as my focus turns to their depths, my faith gets lost in their darkness.

So our late night porch talk covered a lot of this, and Jesus has reminded me again of His faithfulness.  He hasn’t moved.  It’s okay to be weak, because then He is strong.  And believe me, we’re not weak in the sense of giving up.  That phrase doesn’t belong in our vocabulary: Give up.  We’re weak in our OWN strength to get through what this storm-filled life throws our way.  Our hope is built on nothing less than Jesus.

When you pray for us, pray for our faith to be strengthened.  For Jesus to be glorified.  For us to be bold.  No fishy handshakes or wimpy hugs and sighs.  He has not given us a spirit of fear, but of love, power and a sound mind!  Look us in the eye and remind us not to give up.  To rest, not quit.  You can ask God for healing if you want, but more importantly, please pray for our eyes to stay focused on Jesus, and our marriage to grow even deeper in love and grace.  We already know a day is coming very soon where we will be completely healed.

Now I need to go and enjoy a fresh cup of tea with my love.  It’s Saturday, and we have two full days together, and I still haven’t run out of things to talk about with him.  And there’s no long distance bill to worry about anymore.

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A Permanent Paint Job in My Hair

“Is that paint in your hair?”  He grinned.  I think I glared.  He knows perfectly well that even though I am the one to get paint in my hair while painting, that none of this has been going on for a few months. He kept grinning and then said, “I LOVE your grey hairs.”  He actually gets kind of giddy about them.  I guess they are factual of our journey from teenagers to pushing forty.  It is a beautiful thing to grow old with someone and know your grey hair makes them excited.  He’s actually getting a tiny swath of grey himself, which I find very attractive.
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I could name a handful of reasons for a few extras which may have popped up this month.

Earlier in July, Nadine came downstairs one morning with an incredibly stiff neck.  We had done massage, chiropractor, essential oils, and more, but she steadily got worse.  More sore, feverish, and absolutely exhausted.  A few doctor’s visits later and bloodwork drawn, I noticed a nice red circle on her leg.  And her shoulder.  And her arm, and torso and so on.  The number hit 17 bullseye rashes.  Her body felt and looked like it was shutting down.  We had spent so much time in prayer over her and Lymes kept running through my head.  As horrible as those bullseyes were, at least they showed up to confirm my thinking and get us on a path of treatment for her.  Just 24 hours later of being on strong antibiotics, she was sitting, standing up, and walking without having to collapse into bed.  She even swept the floor!  If people think I am anti-medicine because I’m a crunchy-granola-Plexus-mama, then they’re misinformed.  There is a time and there is a place, and I thank God for the ability to research and choose and make informed decisions.  I do not take antibiotics lightly.  So thankful too to have a quality probiotic to counter the nasty effects it will have on her good gut flora!

A few days after she started feeling nasty, I was grabbing some groceries and meeting my mother-in-law to pick up the youngest two who had been having a week at grandma’s.  We were waving goodbye as we backed out of our parking spot when all of a sudden the gear shift popped out of place and the whole gear shaft just started spinning around.  Thankfully, Linda hadn’t driven away yet, so we pushed the van into a safe spot and we all piled into her car where she drove us home!  Thankfully, it was not a huge fix!  Yesterday something else happened and we had to tow it again, but it’s fixed already.  We’re getting to know our local tow-truck drivers!
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I spent a lot of time sitting still and being quiet that first week of July.  Not my strong point.  Our front porch is my summer haven, and it gets a lot of love.  Between a broken arm, a broken vehicle, and a broken down body… I was pretty broken myself.  But God.  He’s in the business of fixing and providing and healing.
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One of the biggest blessings of this trial was seeing the rest of the kiddos rise to the challenge of taking over Nadine’s chores and jobs and serving her in many different ways.  From getting her icewater, to cleaning the kitchen, to hanging out with her while she couldn’t do anything but lay there.  It was refining for us all!  We also saw her faith grow in Jesus by leaps and bounds, as she audibly thanked Him for the sickness, and acknowledged He knows what’s best for her.  Do you know how hard that is to do?2016-07-13 14.19.53
As her body started to heal, God did another amazing thing for our family.  Because of the many broken things which needed money to fix them, we had to tell the kids they weren’t going to be able to go to soccer camp this year.  It was super difficult to tell them that, but we reminded them how God had the power and ability and means to provide for them if He wanted them to go.  So we laid it before the Lord without telling anyone else about the need.  On Saturday, one week before the camp would be starting, Elijah said to me, “Mom, camp starts in 7 days.”  I told him to keep praying and trusting God would provide if they were to go.  The next day, we recieved a phone call from someone who wanted to pay for our kids to go to camp if that was something they were wanting to do.  Seeing their faith grow when we told them the news was incredible.  At that point we weren’t even sure if Nadine could go!  We didn’t shop for her, until two days before they had to leave, when she was showing signs of having enough strength to handle a week at camp.  God provided in more ways than we could imagine!
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Now camp is over, and we are on our second day of school!

We are still celebrating summer, with later nights and a bit of sleeping in, but I always need a week or two of slowly easing into what our year will be looking like for the next ten months.  This gentle beginning also gives me room to purge from last year.  The last couple of days have seen six trash bags exit our house, lockers cleaned out, shelves re-organized, new books introduced, and a general feeling of newness and anticipation for the year ahead.
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I’m incredibly thankful for these amazing blessings entrusted to us for a time.  For the five independent ones downstairs eating icecream, and the one who is sending me love kicks from my womb.  We actually decided to find out whether “Baby Chip” is a boy or girl.  Here is the video of the kids’ reaction to the news:

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There is so much more I could write, but I have a few things left to do with my quiet evening, which my greying husband gifted to me tonight.  Thank you, love!


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Finishing With A Smile

The weekend has come and gone.  Hours of preparation, driven into the pavement, mile by mile.  The weather this year was amazing.  I even had to wear a jacket through the night to ward off feeling chilly.

On Friday evening, we delivered the three youngest to my in-laws and picked up Matthew’s race packet.  He got checked out by the race doctors, and then we went home to rest.  I barely slept, full of excitement and wonder for the following two days.  On Saturday morning I drove to Philly to drop him off at the start line, with his cooler of food and drinks, and said good-bye.  Then I drove with a friend to drop Nadine off at girl’s camp for the week!    Elijah went with my mom where he then was driven to soccer camp on Sunday.  What a crazy, emotional day of saying goodbye!

By the time I finished dropping her off and made my way back to Philly, it was about 7:30 pm.  I drove the race loop where Matthew was running, in hopes of seeing him.  I found him around mile 3 of 8.  He was with his buddy from high-school.  What a blessing, since the previous few hours he had been struggling with some major stomach discomfort.  When he made it back to the start/finish line, he lay down on the ground and said he felt like throwing up.  His stomach was not happy.  At this point in time, a slew of friends and family had arrived, and we chatting around him, some praying, some just talking.  We waited it out for an hour or so before he finally sat up and ate something that agreed with him.

The next two loops were run with different friends.  I was able to pray and see the lights of Philadelphia in the middle of the night.   Then two girl friends of mine came to sit with me through the night.  I never felt alone, which had been one of my anxieties.  I didn’t realize how much this had been weighing on me until I sat there with them.  It was pretty special.  How important it is to be there for one another!

Once 4 am rolled around, my half-marathon buddy, Gail, and I fast-walked with Matthew through the dawn.  It was incredible starting off at night and ending in day.  We met a fellow lone ranger on the path who was pretty discouraged, and he started to keep pace with Matthew.  Once we finished that loop, it was already 6 am, and so Matthew started out for his 10th loop and then some, alone.  The total mileage he logged was 88.5.  His goals were to finish at 10am, have fun, finish with a smile, and be able to walk to the car unassisted.  He did all these things, and I couldn’t be more proud.

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1- Our last time all together for a week!
2- One last nap, storing up reserves
3,4- Getting all checked in for race day!
5- Lots of melon for the runner
6- When I first spotted Matthew, 9 hours into the race.  I beeped my horn like a crazy woman and cried a bit too.
7- A four-year tradition of sidewalk chalk
8- Servant-friends, helping Matthew through the hardest part of the night
9- An art museum steps walk/talk/prayer time
10- Hot tea, words of encouragement and lots of love
11- Almost there
12- Sleep for a long time
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He ended with a smile.

I have fought the good fight, I have finished the race, I have kept the faith.
2 Timothy 4:7


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Cleared To Run

I’ve always loved to fly.  Something about the sound of an airplane being able to go where my finite body can not on its own, simply amazes me.  I remember the sound of an airplane coming back to our small station in the middle of Africa.  I remember the pilots calling out in French: attention! before starting the propeller for take-off.  I remember being in those Cessnas so many times, eagerly spying out Mount Nyankunde, which meant we were home.  My sister always had her head buried in her lap, or eyes closed, so I took in all the scenery for her, my stomach never feeling the queasy hers did.  Before each flight, the mechanics cleared the plane for flying.

This weekend is a big deal for Matthew.  His body has been cleared to run, and we are pumped up to take this 24 hour flight.  We, meaning, he is doing all the running, and I will be on the sidelines cheering him on big time.  When we think back to a year ago, we didn’t know his esophagus was closing up and the strange loss of his voice meant more trouble was brewing in the near future.  It was a really hot weekend, and whether it was truly canceled because of the heat or not, we look at it as a blessing from God.  We don’t know what would have happened out there, but I think God preserved his life.

About 95 percent of folks think what he is doing is pretty crazy.  They ask, why?  Reading through the first year of the race, here, I am revisited by goosebumps.  Is it safe?  This question makes Matthew laugh.  I don’t believe Matthew is stupid, but he also isn’t fearful.  Too often we let fear keep us from pushing harder.  If you asked him why he runs, his answer always is: I  feel closer to the Almighty God when I run.  Running strips him bare.  He spends a lot of time in prayer while he runs.  On the practical side of safety, his doctors have given him an excellent bill of health.  However, on the side of safety where most of us dwell… not wanting to be in pain, shying away from inconvenient, and letting fear of difficulty keep us from getting stronger… he is living on the edge.  Because it isn’t about safety, this life on earth.  It’s about trusting a really big God who isn’t always safe.  As C.S. Lewis penned: “Who said anything about safe? ‘Course he isn’t safe. But he’s good. He’s the King, I tell you.”

There are three men we pray for daily, throughout the day.  One, Jerry, is a prisoner in Africa, and we are praying for him to be found, released and the darkness to fall.  One, Saed, is in a known jail, but illegally being tortured and willingly kept from his home country of the United States.  Another is a good friend of ours and he lives in an incredibly dark, hellish environment in one of the most unsafe regions of the world.  All three are running an eternal race with eternal significance.  We don’t know the end of their stories on earth yet.  We know what they are experiencing, both willingly and without choice, is bringing even greater glory to God.  When Matthew runs, he enters into the suffering of these men who are running too.  Maybe not with their feet, but certainly with their lives.  As Elsie keeps asking me about Jerry, she says, Mama?  Is he still running?  Yes, he is still running.  And with all of our breath, so we should be too.

We’ve been cleared to run.

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What My Husband Did Behind My Back

Some days hit you like a blast of cold water being unexpectedly tossed over your head during a hot shower.  Usually motherhood is  a series of such moments, as startling as a scattering of sharp legos all over a bedroom floor: you know they’re there, but you can never be quite prepared for their sting.  Such was Friday.  Actually, ever since Tuesday my brain had been thinking it was Friday.  When Friday at last arrived for real, I was ready for it to finish its comic series of events.  At the time, they were not-so-funny events.  DSC_9383-2DSC_9371-2DSC_9388-2
During nap time, Betty came wandering downstairs to where I stood in the kitchen.  She sidled up next to me, smoothed her hair and said with a coy look on her face, Is it perfect, mama?  I looked a bit closer, thinking she had wet her hair in the bathroom.  Nope.  There was no hair to wet.  She had given herself a generous haircut, right in front.  Perfect wasn’t the first word that came to mind.

A teeny tiny part of her bangs remain after her perfect haircut.

A teeny tiny part of her bangs remain after her perfect haircut.

My day just kept getting better.   While making dinner, which involved mixing up a batch of pizza dough, I grabbed the garlic powder to put a shake of it into the batter.  Obviously, I flipped open the wrong side of the cap, as a huge pile of garlic powder dumped like an avalanche into the wet dough.   I quickly scooped out as much garlic powder as I could, muttering under my breath.  The next best thing to do: double the batch and enjoy the garlic.

As the evening wore on, small things started to get to me.  There was mud where I didn’t want mud.  There wasn’t hair where I wanted hair.  There was arguing.  There were interruptions.  I have a spot where I like to hide in my room.  If I sink down low enough, no one knows I’m there.  Friday they seemed to instinctively find me.  Especially the nap-less one.  I felt like the mama elephant in the book Five Minutes Peace.  Eventually it became clear: There is no avoiding the masses, I thought.  It’s time to jump back in the boat.  So I stopped hiding and plugged on through the evening, mustering up as much strength as I could.

Despite my resolve to be happy when Matthew got home, he was met with a more wiped-out-than-usual countenance.  With much grace, he just hugged me.  I started going over the difficulties of my day.  He took my head in his hands and said something which really caught my attention.  It was as startling as a blinding light shining in my eyes: Aim, the kids have never complained to me about  you.  I needed to stop doing what they never do to me.  After looking at Betty’s hair, he let her know it’s not okay for her to cut her own hair, then he turned to me and said simply, She’s three!  Yes, indeed.  This will pass.  It will grow.  She learned.  Move on.

My emotions were stabling, but not quite steady.  I had one last complaint to offer my unwavering husband.  I was feeling a bit vengeful towards the bathroom scale, and did a little “Woe is me” routine.  Yes, I have been exercising about twice a month.  Yes, I am no longer in my twenties, so that matters now.  Still, I wish that scale showed me a little slack.  I was going to go to the downstairs bathroom to make sure the toilet was flushed and there was no pee all over the seat before our company arrived.  Surely my day was on the upswing.

Matthew went upstairs to get cleaned up from work and I decided to check our email before checking the cleanliness status of the powder room.  I was a little shocked at what I saw.  Next I checked facebook, and the top news in my feed was this:
Surprise anniversary gift for my wife: registering her for the Philly love run half marathon!!! She doesn’t know yet!! Wait till she checks FB or email! Let the training begin! Giddy with excitement!

Let’s just say, I had to go into the downstairs bathroom to compose myself.  I spotted a lime on the laundry room floor before walking back into the kitchen.  I picked it up and thought pretty seriously about beaning Matthew with it when I saw him.  I’m glad some of our company had just arrived and was standing in the kitchen with my sneaky husband, when I emerged.  Otherwise, that lime would have made swift contact with his head.  He grinned and rubbed the goosebumps off his arms.  Risky, risky move, buster.

Since Friday, I’ve thought a lot about difficulties and training.  Running this morning in 30-degree weather would not have happened if I had not been presented with this challenge.  (My husband knows me pretty well.)  Plain and simple, we tend to shy away from difficulties.  We want to go from point A to point C without passing through point B.  This is impossible.  We want to learn a piece of music without ever practicing.  We want our kitchen to be spotless without lifting a finger.  We want to lose weight without the sacrifice of watching our diet and putting in any effort to exercise.  I so desperately want to run 13.1 miles without having to go out there every single day and run one mile or two.  It just isn’t going to happen, no matter how much my desire is for it to happen that way.  The richness of any accomplishment is deeply rooted in the amount of time it required to succeed.

In the same way, our Heavenly Father knows what’s best for us.  He sees that finish line, so very distant from our earthly eyes.  He tells us things very similar to what Matthew has been telling me: “You’re stronger than you think, Aim.”  My grace is sufficient in weakness, Jesus tells us.  Like any good trainer, He pushes us outside our comfort zone.  That is where we see results.  When you walk the same path over and over, never stretching yourself to go a  bit further, you may miss the incredible view just up ahead.  When we run the same mile and never push our lungs and our legs past that initial burn, we never discover we have the ability to do a bit more.  Jesus totally knows how hard it is.  He never once said life would be burden-free, but He invites us to lay our burdens on His capable shoulders.  He never said He would only give us as much as WE think we can handle.  But He said “My yoke is easy and my burden is light.”  He will give you just a bit more than you think you can handle, so you’re stronger to go the next mile.  It’s cold, it’s nasty sometimes, but He always sticks with us.
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So I start my thirteen-mile journey… one step at a time.
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Oscopy, Ontology, Bananafanafofology

Today was a great day to be in the city.  I ran back and forth from the medical building to the parking lot to add more money to the meter, as the doctor’s appointment got longer and longer.  A “quick” consult with the ENT surgeon led to seeing yet another specialist at Jefferson hospital in Philly.  The first doctor didn’t like what he saw in the subglottic region of Matthew’s windpipe.  The second doctor videotaped his way down Matthew’s throat and explained what we were looking at:

See here and here?  Those are your vocal chords.  They are supposed to be white, not bright red like that.  Down beyond this area is where you are having swelling, and which makes it hard for you to breathe.  It was fascinating.  Like our friend (who is a speech-language pathologist) described his vocal chords, they looked like a butterfly flapping its wings… except this butterfly shouldn’t be red.  The real problem lies just under the voice box, and we discussed what our next step needs to be.  As the Wegener’s runs its course, it acts somewhat like a roller-coaster: flaring up and then getting back under control.  We are hopeful to be on the downward slope right now.

As long as things don’t flare way back up, he is scheduled for a bronchoscopy in four weeks in order to closely examine the extent of the subglottic stenosis and to perform a balloon dilation of his stenotic area.  Basically, opening up his airway ever so little and hoping this small dilation will remain open… then doing it again a few weeks later if his body handles it well.  He explained it as a two steps forward and one step back operation.  He will also be seeing an otologist about his ears… which have some problems again.

As crazy as it is to keep all the doctors in order, we are so incredibly thankful to have access to these remarkable specialists.  We are thankful his eye tubes have still held up and look good a couple of years after that surgery.  We are thankful for people who have joyfully watched our children so we can go to all these appointments and for kids who come home and report having “the best day ever!”  We are thankful for being forced to slow down and recognize what is truly important.  It isn’t our car, our house, our clothes, or our status.  It is our breath, our relationships, our time and how we use it.  We know we belong to the God of the universe, the God who sees.  We don’t know when our last breath will be, but we know when it ends on this earth, our life truly begins.  Until that day, we want every moment to count.

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Flapper girl with my motorcycle man last night.


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Everything New Today, or ENT

As usual, this week has passed about as quickly as the wind that whips my hair through the open windows of the car.  This phone dump is a smattering of what has blown through this week:

My life, in our van, is always noisy.  I admit, I’m jealous of folks who say their kids get sleepy in the car.  Ours tend to go a bit wild.  They tell jokes, do anything and everything to annoy their neighbor, cry, sing, tattle, and do whatever it takes to not fall asleep.  I experienced an almost-flat tire last Saturday.  When I drove into the gas station to check it out, I hadn’t even gotten out of the car yet when a very nice man started to pump up my visibly flat tire.  Turns out there was a screw in there, and was easily fixed later.

A city date with friends did my claustrophobic mommy-heart good.  There are some days when the walls of home and car seem very tight, and the expanse of the city line eases the life-is-closing-in-feeling.  We ate at an Ethiopian restaurant which served stellar samosas, delicious dinner and the most amazing coffee I’ve ever had.  It was so good, that I tried my hand at cooking it at home, with great success and happiness.

Another highlight was our 10-10 at 10:10 date to get Elsie’s cast off her arm!  With a clean bill of health, she is back to speeding across monkey bars.

This week it was an honor seeing my 4th and 5th grade teacher from when I lived in Africa.  When time telescopes like this, I shake my head in wonder at how I have such clear memories of when I was as old as two of my children.

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Other highlights include the fact that I need reading glasses.

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Yesterday, two of my accessory-loving children got into my closet.  It was a much-needed diversion from school.

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Then somehow the outfit helped Jack get through the rest of his work a little easier.

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Cooking is on an upswing for me, after a long bout in non-inspiration land.

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Matthew visited the ENT this week and found out he has a yeast infection in his throat, so he’s on medicine for that now.  His voice continues to be hoarse and he’s trying to rest it as much as possible.  Otherwise, he feels well.  In the next couple of weeks he needs to meet up with the plastic surgeon who did the surgery on his eyes a couple of years ago.  We will need to set up a long-term game plan for possible future reconstructive surgery of his sinus area.   The bridge of his nose is collapsing, and before a situation might become emergent, we need to figure out some possible courses of action.  We would love to stop the medical dates, trips to the pharmacy, and be immune to disease.  Yet, we know Jesus more through trial than through ease.  We grow when the weight is heavy, not light.  This temporary home loses much of its charm when it’s full of trouble, and our heavenly home grows more beautiful.  Knowing every situation is allowed by God who knows and loves us more deeply than we’ll ever understand, gives comfort and peace beyond explanation.  One day ENT will have a new meaning for us: that day when Jesus makes everything new.  Everything New Today… might be today!