wegeners

The Quality of Endurance

/ amylynw / 4 Comments

Twenty-three minutes later, I’m drenched in sweat.  My second cross-fit workout is in the books.  My new coach, long-time friend, and husband of ten years, is planning out daily workouts for me to do.  I was terrified of the burpees, but did all 45 of them, in addition to the other things on my list.  I was afraid of what people would think when they saw a crazed mother in a bright orange shirt, running around the block yet again.  But I did it anyway, and it feels good… now.

That wasn’t the only tough thing to swallow today.  This morning Matthew went to his ENT doctor to see what’s going on inside his ears and nose.  He’s been having a wicked ear infection, related to the other issues in his sinuses, brought about by Wegener’s disease.  The news wasn’t exactly good.  For a few years he’s had a hole in his septum, which has stayed the same, never getting worse.  Today, however, the doc said it is considerably bigger, and Matthew will be needing reconstructive surgery within the year to repair the damage.  What this looks like, exactly, we don’t know yet.  He said they will probably use a part of his rib!  It is all a lot of new stuff to take in and think about.  We have had our tears.  Not necessarily tears of discouragement, as much as feeling worn out with it all.  It’s like a race that you know isn’t over, but this particular loop is just super tiring.  More medicine.  More surgery.  No improvement.  It’s a vicious cycle.  It’s amazing how such a tiny part of his body can literally be eating away at itself, even though the rest of his body is in excellent physical shape.

When troubles come your way, consider it an opportunity for great joy. For you know that when your faith is tested, your endurance has a chance to grow.  These muscles in my body don’t have a chance at growing unless they are put under some serious pain and suffering.  I will never endure more than a walk around the block unless I subject myself to two blocks, and then more.  In the same way, when our faith is tested, our endurance to hold on, grows.  Our Heavenly Father is not just concerned with the end result.  He’s very in tune with the process of getting there.  A process which doesn’t always make sense to us.  But we trust Him and do another set of burpees, so to speak.  Because we want to be like Jesus.  He set the example very high, of what true endurance through trial is like.  He trusted His Father, and so must we.  As we relax into His strong arms, there is little room for anger.

As Matthew prayed today, “We are not children of a poor man.”  No, our God is very rich.  Tonight we choose to believe His promises, and we choose to sing:

…Whatever may pass and whatever lies before me
Let me be singing when the evening comes

Bless the Lord oh my soul
Oh my soul
Worship His holy name
Sing like never before
Oh my soul
I worship Your holy name

You’re rich in love and You’re slow to anger
Your name is great and Your heart is kind
For all Your goodness I will keep on singing
10,000 reasons for my heart to find

Bless the Lord oh my soul
Oh my soul
Worship his holy name
Sing like never before
Oh my soul
I worship your holy name

(-Matt Redman, 10,000 Reasons)

 

Monday Crunchies

/ amylynw / 3 Comments

Monday.  The day when it feels like every cracker crumb is stuck to the bottom of my slippers as I crunch across my kitchen floor.  The day when school sneaks up and says, “Boo!”and scares me every time.  The day when the contents of my fridge force my creativity to expand to un-natural proportions just to think of something with which to feed my tribe.  The day when an extra cup of tea is in tall order.  I honestly don’t dislike Mondays, mostly because there is nothing too drastically different about them than every other day in the week.  I still cook, clean, change diapers, do laundry, make three meals, sweep dust bunnies, wipe mysterious stickies off the floor, play referee, and plop into bed exhausted.  True, Monday follows our one and only guaranteed family day, which is always a bit of a letdown.  I guess that is why my kitchen floor feels more crunchy than usual and school seems a bit harder than other days.  Today Betty also seemed to turn a corner in her tiny growing-up life.  She has a snotty nose and a sore throat, but there was more to her wee little crying fits than just all that.  They definitely left me swirling a little bit.  I’m bracing myself for a new year, new Betty.


Is there anything cuter than a heart on the bum?  Perhaps, maybe, that heart sneaking away up the stairs in a flash…

I had a lot of girl time this weekend while Matthew took the boys rock-climbing among other things.  It is rare that I catch all three playing so sweetly together.  Nadine was pushing the littles in the clothes basket, which was just as exciting as any boardwalk ride, let me tell you!

 

Betty weighed in a whopping eighteen pounds at  her one-year check-up.  She loves to walk, assisted.   Some of her new tricks include blowing kisses and giving away real-life, sloppy wet smooches on your cheeks.  She climbs the stairs in a jiffy and then lays on her belly at the top and squawks for help to get back down again.


On Saturday when she was starting to get feverish, Nadine rocked her right to sleep while humming “Silent Night”.  It was precious.


Speaking of sleep, this is my favorite part of Monday and every day. Sneaking into the kids’ bedrooms and watching the way sleep transforms their darling faces.  Betty snores and is always in a different position.  Sometimes on her tummy, sometimes her back, sometimes with her feet straight up in  the air on the side of her pack n’ play.  Elijah generally is sprawled out across his bed and can’t be woken up for anything.  Just like his daddy.  Jack is usually curled up into a tight ball, sometimes his entire body underneath the covers.  Just like his mama.  Nadine is almost never asleep before I go to bed, but when the rarity occurs, she is on her back, straight and tall, or half way under her covers and half-way on top of them.  She’s somewhat haphazard when she sleeps.  There is frequently something funny about how Elsie has fallen asleep.  She doesn’t have any one special thing which she likes to sleep with every night.  She almost always is asleep on her back, like a statue, sometimes hands folded across her chest.  The other night, unbeknownst to me, she fell asleep holding a balloon she had received that day.  It is pretty tricky taking pictures in a dark bedroom, but the flash didn’t even make her flinch.


This Monday Matthew got his third out of four infusions.  He’s feeling so much better than three weeks ago, and next week we’ll see where he is in a bit more detail.  When he got home from work, I was sitting on the dirty kitchen floor with Betty on my lap, banging spoons onto a metal bowl.  He knew about my challenges of Monday.  Then he handed me pure gold:  my favoritest tea ever and German chocolate.  Now there is a sweet way to end a Monday.

Come Away With Me

/ amylynw / 1 Comment

I’ve been wanting to write about our amazing Anniversary Weekend, but somehow I find myself collapsed into bed each night, starting another day, then collapsing again.  As refreshing as it was to put a little time lapse on mommy-ing for a couple days, it was sweet to be back at it again on Monday.  The fondness that comes with absence was strong that day for all of us.  The rest of the week has been a bit more like “normal”, and I’ve felt a tad overwhelmed by the constancy of motherhood.  My little baby Betty is officially a one-year-old and woke up one morning acting like one!  She climbs the stairs like it’s her job, and pulls open cupboards and doors, happily exploring anything and everything with her sweet little hands.  She loves to stand on her tippy toes and laugh out-loud. She has the roar of a little lion that can rise to the top of seven voices.  She can then just as quickly be quiet and politely sign for “more please” at meal times, delicately touching her little fingers together with both hands.  Daily, I wonder how such a voice can come out of such a tiny girl.

Our weekend away was water to my parched soul.  After Matt’s mom picked up the kids, we were going to meet at home.  A little accidental locking of his keys in his truck didn’t damper our spirits for a great weekend.  We started with dinner at Bonefish Grill, which was yum times ten.  Then it was off to a mysterious place for dessert.  We pulled into a favorite coffee shop called Burlap & Bean and enjoyed huge mugs of fabulous coffee, dessert, and a live concert by a local artist.  It was Simon & Garfunkle meets the Beetles with a tad bit of original funk to round it all out.  We loved it.

Charlie Philips

The next morning we had breakfast at the Classic Diner, which many friends have told us about.  It was super classy and delicious.  
I loved the mirror in the bathroom!

We took our time meandering before taking a run/jog/walk through Valley Forge.  I regret not wearing my camera around my neck, as akward as it might have been.  The day was breathtakingly beautiful and felt like May, not January.  I almost feel like summer really should be in a few weeks because of the seasonal jet lag that day gave me.  It was glorious.  We jogged, explored iron canons, peeked in the windows of some old houses, and hiked across fields to find shortcuts on the way back.  I felt like I was twenty again, getting to know this cute guy that I hoped I would marry one day… then I basked in the joy that we already were married.  It is heaven to be filled with such love.
My phone was a little less awkward to carry, and shot this fun picture… the only one of the two of us from the weekend.

After Valley Forge, we trekked to the grocery store and enjoyed the indulgence of shopping for one meal in mind.  We went home and cooked and cleaned for our fancy dinner with friends.  I had my camera out and ready to shoot, but never touched it all night long.  Everything from the cheese and olives to the mushroom caps was delightful, but were mere highlights to the main event: friendship.  We basked in the joy of God’s faithfulness in our lives and the lives of each couple with us.

We taped questions underneath each plate which that person had to answer.  I think the question that sticks with me the most is, “What hardship has strengthened your marriage the most?”  As I reflect back on ten years I remember a lot.  The worst and yet best times have been the times when God’s strength was made perfect in our weakness.  Those dark tunnels of financial destitution, spiritual drought, and physical suffering have brought the most blessing.

This week I’ve come face-to-face with one of those past trials.  Though Matthew feels pretty well, it’s obvious the Wegener’s disease is rearing its ugly head again.  His eyes look sick and I think it’s more difficult for me than for him sometimes.  But I know it isn’t easy for him to face this reality again.  On Friday he goes in for his first round of four infusions that will hopefully shock his immune system into doing something else with itself instead of attack his sinuses.  I despise Wegener’s disease and every disease on this earth that reminds us of our imperfection and humanness.  I hate the way disease alters our bodies from how God intended them to be.  Sometimes I’m tired of being strong, which is when I realize that’s a good thing.  I am so very weak, and I feel God’s strength welling up inside of me to carry me through this step.  He gives me enough strength to hold my husband’s hand through sickness and health.  I have faith that God hasn’t changed and He will do great things through this trial.  Thanks for praying!

Seventy-Three

/ amylynw / 3 Comments

If I waited until things got perfect around here to write, this blog would end right here and now.  Lately I’ve been on the edge of a huge deep ravine into which I  felt a bit like I’m slipping.  Then the Wonderful Counselor brought this Psalm to my mind.  It reminds me that I’m not the first one in history to think these thoughts.  He also offers a solution to these downward spiraling emotions.  My feet had almost slipped.  I had nearly lost my foothold.

It’s so easy to wish for more.   For I envied the arrogant when I saw the prosperity of the wicked.

The latest bloodwork and CT scan shows that Matthew’s sinuses are still being a pain and he will have to have another infusion in the near future.  At times I feel like They have no struggles; their bodies are healthy and strong.  They are free from common human burdens; they are not plagued by human ills. 

But then I remember that  They say, “How would God know?  Does the Most High know anything?”  And I am blessed to know that He DOES.

But I’m still doubtful and compare myself to others.  People who seem like they have it all together with their laundry piles, bank accounts, child-raising, meal-planning, body type and choice of vehicle.  When I stay in this place, though, it’s a scary, slippery place to be.  I have to get out of here.

When I tried to understand all this,  it troubled me deeply till I entered the sanctuary of God;

That sanctuary often becomes the place where I stop and stand on the outskirts.  All of a sudden I notice the muddy shoes, the messy hair, the worn out clothes on my not-perfect body.  So many times I walk away when I’m just one step away from entering His presence.  I let doubt overtake the truth.  I’m not good enough, I believe.  What I’m really saying is that Jesus isn’t enough.

When my heart was grieved and my spirit embittered, I was senseless and ignorant; I was a brute beast before you.  When I realize my error and take in a little bit more of the depth of Christ’s love that has clothed me in perfection… I step inside His sanctuary.  The surroundings are always different.  I used to imagine that the ideal place to meet with God was on a sunny window seat with fluffed pillows and the perfect cup of tea in hand.  If I wait for that, though, I will forever stand on the outskirts of God’s presence.  Right now it’s in the middle of our house with car noises in the background and the smell of baking banana bread wafting through the air.  There is noise, so often noise, in the sanctuary.  That is when I excuse myself because I can’t possibly be in the presence of the God of Heaven.  He can only be where perfect peace and quiet exist… not clutter and mess and unbelieveably loud decibles.  When I think that way, I never live in His presence.  I slip into behaving like He’s not around, and I hurt my kids and disgust myself.  The heart of the sanctuary can be quiet, when everything around me is loud.  I’m learning.

Yet I am always with you;  you hold me by my right hand.  Hold it tighter, please.  Don’t let me forget.  Keep me from slipping over that edge.

You guide me with your counsel, and afterward you will take me into glory.

Whom have I in heaven but you? And earth has nothing I desire besides you.  Not the best thing earth can offer compares with the peace that passes understanding.

My flesh and my heart may fail, but God is the strength of my heart and my portion forever.  

Those who are far from you will perish;  you destroy all who are unfaithful to you.  But as for me, it is good to be near God.

I have made the Sovereign LORD my refuge;  I will tell of all your deeds.  I will not pretend that my life is perfectly put together.  But I can confidently say that when I live in His presence, it is a safe place to be.  Safe from discontent, despair, and doubt.  I WILL tell you about the great things He’s done for me.  I will keep on telling His deeds until I have no more breath to speak.

The Healer

/ amylynw / 2 Comments

Last week, Matthew and I headed down to the city once again for post-op Dr. visits.  Everything looked good, and we walked around Reading Terminal Market for lunch and icecream.  So much more fun than when I was alone last time!  There is so much color and pop and delight for all of my senses!  I just love that place.

    


This icecream?  It tasted like coffee with a mouthful of real chocolate in every bite.  I told Matt I didn’t want any, but I did keep “trying” it.

I’m so thankful for the way God is healing Matthew.  His blood-work shows no Wegener’s.  He has no pain.  He looks amazing.  In a few months if things still look this good they will wean him off the methotrexate and see if the blood-levels remain just as good.  If they stay stable and he is symptom-free for a year without medicine, then he will be considered in remission.  He has tried a few times in the past, but symptoms have always started to come back after a couple months.  His eyes are fine.  Yesterday he accidently rubbed them and the tube in one eye popped out about an inch.  So he had to drive down to Jefferson this morning and the doc took it out.  Kinda freakish. The tubes were there to keep the holes open as the incision heals and they were just trying to keep them in as long as possible.  I think back to six years ago when this all started and am amazed by God’s goodness and provision to us.  A song that keeps persistently coming across my path this week:  “He gives and takes away, Lord blessed be Your name!”

  
He looks and feels so much healthier now!  He’s running Wegener’s to death!  To people who say he’s crazy to run so much, he would say it like it is: “I think it’s crazy that people walk around with extra pounds on their body and voluntarily put themselves at risk for deadly diseases such as diabetes, heart-disease and stroke.”  He has lost a lot of weight this year, and he contributes it to eating healthy and running many, many miles!  I’m so proud of him!

Ten Years of I Love You

/ amylynw / 1 Comment

Ten years ago today I was standing with my hands over my face, trying to take in one of the best moments of my entire life.  He said, “I’ve been working on something for you…and your parents and my parents agree that in order for us to best serve the Lord, we need to serve Him together.  Amy, I love you.  Will you marry me?”  I said “YES!”and he spun me around, and I’ve been spinning ever since.

Today we went into the city of brotherly love.  Unfortunately, while I was able to enjoy the gorgeous blue sky, fabulous sights and sounds, and delicious food, Matthew was stuck in a hospital gown, unable to eat, and then drugged for his eye and sinus surgery.  He did fine and is resting now.  The next time you see him, he shouldn’t have tears running out of his eyes unless he is actually, truly crying.  His tear ducts are opened back up again and his sinuses cleared.

While he was going through all that fun, Betty and I walked around Philly and took a jaunt down Jeweler’s Row.  In honor of our anniversary, I took my engagement ring and our wedding bands to get cleaned.  They’re as shiny as a mirror now and I can hardly stop  looking at them!  I’ve  been wearing Matt’s all day while he was in surgery.

 before after

I ate at Dinic’s in Reading Terminal Market.  Ooh lala.  My mouth totally had a party.

So, here’s to many more romantic days, no more surgeries, and ten more amazing years with you, Matthew.  Won’t you pick me up and spin me again?  Won’t you grow old with me, my love?