Sometimes I’m Not Okay… and That’s Ok

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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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5 thoughts on “Sometimes I’m Not Okay… and That’s Ok

  1. Oh, sweet Amy….I’m weeping as I pray for you! ❤

  2. Love this, Amy. I know that it is so hard being vulnerable, but it is also so worth it, isn’t it? You and Matt are strong and courageous and faithful. Keep going. And in the meantime, I’ll be praying for all of you. Enjoy your weekend, friend.

  3. Thank you for being real and sharing this Amy. We love you all and are praying.

    Knowing the path vs. walking the path… Easy to say/type/read but hard to walk out — especially when it gets dark and we start to feel the wind and waves and wonder about the next step. “Be still, my soul; the waves and wind still know His voice who ruled them while he dwelt below.”

    I’m so glad HE can use weak-in-faith, broken and flawed children — otherwise He would have been done with me long ago.

    But in the meantime, life is real — with no pause button. There are impossible hurdles, scary bills, and way more expected of us than we have the capacity to meet, to deliver, or to cope with. It feels like no one could possibly understand our particular circumstances and the weight we are carrying — but trying not to carry it on our own. And that’s the point. It’s that promise of truth that in our weakness HE is strong — and with us. We’re not alone as the enemy of our souls would have us believe.

    A good quote I recently came across: “God’s answer to our prayers is based on His long-range plan, not our immediate relief.” (Swindoll)

  4. Amy, thank you for being vulnerable and honest! I grew up, thinking that I had to be perfect — that God could only use “perfect” people. A lot has changed, and God has set me free from a lot of that flawed thinking. BUT… I am still learning what grace and redemption means. I am still learning that there is something so incredibly God-honoring when we come to Him with our brokenness and vulnerability and authenticity and allow Him to use us and work through us — not in “perfection” or in spite of our faults but because of them sometimes. Sounds strange, but I think of the verse that says “His strength is made perfect in weakness.”

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