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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Milk and Algebra

Nursing a baby and helping with Algebra.  Two things I never thought I’d be doing at the same time.  Okay, I should be honest here and say I’m not actually the one helping with Algebra.  It’s super helpful to be married to a man who gets excited over lower case letters jammed between parentheses.  I thought math was about numbers?  Anyway.  My expertise is milk production.  I do love having teenagers in the house, though.  Nadine is awesome with Harry.  They have a ton of fun together.  She gets some great pictures of him, too.

Then there’s this teenage scientist.  When he’s not building legos or playing with his brother… he’s thinking about what else to build.  One day I came home and he had dyed his hair blue.  It was a fun experiment.  Very thankful for our fantastic hair stylist.  She always has fun with his hair and does something different.  Elijah also has a special bond with Harry.  There is a precious gentle side that exudes when he’s around him, and he can’t stand to hear him crying.  They look so much alike!  The other day we discovered that somehow he is about an inch from surpassing me in height.  Every hug feels more and more like I’m hugging a young man and not a little boy.

Jack is extremely excited to have mastered a standing back flip.  And a round-off back handspring.  He is completely self-taught, with just YouTube videos to help guide him.  The gumption to do it is all him and isn’t something that can be taught.  He turns 11 this month and though his hands have been bigger than mine for a year or two now, his body is also swiftly catching up.  Matthew’s family rented out an ice hockey rink last week, to celebrate the April birthdays. He and Harry have a unique bond as well.  Today he read stories to him on our bed, while Harry played with his feet and listened intently.  It was precious.

Elsie is a great big sister.  She and Betty are pretty much inseparable.  I love their bond.  They’re always into building forts and changing outfits and planning great adventures.  She loved the VR headset Elijah made out of an old cereal box and duct tape.

The other day Betty came up to me and asked me if I heard her whistle.  I said, yes.  “Then why didn’t you answer?!”  I had to laugh.  “Um.  I didn’t know you were calling me!”  She says the funniest things.  Like, “On it!” when I ask her to do something.  Or, “No can do!” when she knows she can’t or shouldn’t do something.  She’s reading up a storm, and it’s so much fun to see the lightbulbs going off in her head.  I asked her to please not read my text that had come through and she looked at me with a very straight face and said, “You want me to learn to read better, don’t you?”  She loves her baby brother.  This was a for real conversation: “His head is the most touchablest.  Mr. Harry, you are the most cutest baby I’ve ever seen.  You’re so heavy because of all your eats!”  Elijah put it very well when he said this about her: “I’m absolutely sure there is no one else on this earth like Betty.  I mean, she is so unique.”

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Then there’s Harry.  He makes us laugh with some of his non-facial expressions.  He can be so deadpan!  He can also be hilarious.

We can hardly imagine or remember life without him.  He’s starting to sleep 8-10 hours each night which has been fabulous.  In fact, I need to capitalize on that amazing fact right now and go to bed so I can enjoy some rest!  I will close with this meme which cracks us up all the time.

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Happy Spring!