2 Comments

Keeping it Sparky

Last night was kind of epic.  Thank you to everyone who was praying for Matthew to find the right truck.  He did!  It is exciting and we’re so thankful!
2017-09-01 21.25.44-2 Last night also brought some much-needed healing to a rough patch we were having.  I’ll be honest.  The last few months have held a boatload of challenges.  The last fourteen days alone have felt like a few months worth of struggles condensed into two weeks. There is a war going on, and we are being distracted to death to try and forget about it.  The enemy isn’t interested in messing with you if you don’t pose any threat to his agenda.  And his agenda is pretty simple really: to make us ineffective.  To get us to quit trying and to quit working hard on things which bring God glory.  When we no longer feel like something is worth fighting for, we quit.

So while every space of our day has been full of doing things which are expected of us, all of a sudden we were staring at each other yesterday as if we were complete strangers.  This has happened before, so we know the warning signs.  And knowing warning signs and heeding them is vital to having a healthy marriage.  We’re faced with two choices: sit back, relax, (or stay inanely busy), hope the other person will notice the distance you’re feeling, and just wait.  The longer you wait for the other person to act, the farther the distance grows.  The less keen it is felt, too, because eventually it feels normal to be living with a stranger.  We’re very adaptable as people, and we will adjust our thinking and calendars to make this way of living with our spouse feel normal.  Soon we’re desensitized to the fact that we are supposed to be lovers, not just co-inhabitants.

The second choice is to roll up your sleeves and fight.  More honestly, we should be doing a lot more than just rolling up our sleeves.  If you aren’t having sex with your spouse at least a couple times a week, this should be a warning sign.  I get it, there are times when that is impossible.  But those are the exceptions, not the norm.  We have had difficult pregnancies and much sickness in our almost 16 years of marriage.  I get it.  But I also know there is a huge white elephant in our bedrooms, and married folks aren’t having enough sex.  It’s all about NOT having sex before marriage (which is a whole ‘nother topic) but hardly anyone talks about the importance of having PLENTY of it WHEN married!

I’m not okay with fake plastic marriages.  God isn’t either.  Nothing is past His ability to heal, restore and revive.  If He can raise people from the dead, He can do the same for marriages too!  The thing about marriage is, it’s actual hard work.  We are so conditioned to shirk away from anything too hard or too challenging.  Yet every single thing which requires hard work to maintain or improve, is worth fighting for.  Marriage isn’t a disposable plate or a frozen dinner which leaves us feeling used or sick. (If this is you, please, please seek help!) It’s hand-made pottery with intricate painted designs and the most delicious homemade spread, leaving us feeling cherished and refreshed.  This is how God, who created marriage, designed it to be.

Matthew is an incredibly easy person to love.  Except when he isn’t.  And I’m super easy to love.  Except when I’m not.  If we only focus on the “when they’re not easy to love” moments… those moments start defining the other person.  I don’t know what you’re going through right now, but if you’re human, you’ve struggled or are struggling in your marriage right now.  Beg God to soften both of your hearts to see your spouse through new eyes.  Whatever you’re feeling is missing, they probably are feeling it too.  Whatever you wish they would do for you, they are probably wishing you would do for them.  If you’re lonely, they’re lonely too.  I realize some people might be truly in the trenches right now and I don’t want to sound like: one-two-three and it will all be fixed.  There are no quick abracadabra magical formulas to make everything all better.  But there is hope.

Another tactic the enemy uses a lot is this thought that we are the only ones struggling.  Everyone else looks fine, so we must be the only ones weathering this storm.  The truth is, we’ve all become much too good at chucking our umbrellas or stashing our life vests when people are looking at us.  Hiding anything that shows we are only surviving.  When we feel alone, we are in a very vulnerable place.  Be careful.  When God saw that Adam was alone, He said this was NOT good.  So if you’re married and feeling alone, something is not right.  You are not alone in the struggle.  Reach out for some help if you need to!

By God’s grace, we are where we are today.  I know chronic illness has been something which could have destroyed our marriage.  But God meant it for good, in order to bring it about as it is this day, to save many people alive.  He has used it to bring about so much good, even though it continues to be something that in and of itself is really very difficult.

This wasn’t easy to write.  I mean, first of all, my parents and in-laws usually read this, and why does that feel awkward?  Then I remember: they all know we do have six children.  Speaking of children, the second reason for this being difficult to write is: my kids read this.  But we’re pretty open about this topic and I know they feel secure that we fight for our marriage.  And maybe one of them reading this will remember where our bedroom door key is and return it.  Hmmm.  Lastly, because it is such a sensitive and prevalent issue, I know it’s going to cause some ripples.  I kinda feel like I’ve lit an explosive and am crouching in the corner, waiting for it to blow.  But the truth is, I haven’t lit something with the intent to cause damage.  A fire has been lit, yes.  But not all fires cause harm.  I pray the flame starts its journey towards many people’s hearts, because at the end are some of the most amazing fireworks you have ever seen.  Be ready.  Your marriage is about to explode.

2017-09-01 21.25.55-2

Advertisements


5 Comments

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.

2017-04-20 14.49.53


2 Comments

Oh I Would Run 3 Miles or More Just To See You Walk Right Through That Door

Today was our “official” first day of school.  Everyone dove in excitedly, and we got everything done that was on our schedule!  We waited all day for Matthew to come home, because we knew he was driving home in something pretty special.  If you heard the screaming from the West End, those were our children excitedly welcoming their Daddy home from his first day of work at Rittenhouse Builder’s.  In his “new” truck, no less.
DSC_4586-2
A few weeks ago, he was offered the position of a project manager at Rittenhouse, and after praying about it the Lord confirmed that this was the right next step to take!  He even provided a much-needed new truck for Matthew, and medical benefits.  We are incredibly thankful.  We were not looking for a new job, but God fit Matthew for this perfectly.  I’m so proud of him!  Elijah is too, but he was just tired of smiling into the sun.
DSC_4596-2
As for the teacher of those wild and amazing children… she needed to pound out some miles tonight.  So, this is me, after running practically all uphill for 3 miles to go fetch Matthew’s old truck and drive it home.  Because that is just something we like to do.  Or, it might have something to do with the fact that I’m training for a relay race taking place in three weeks.  I am slotted for 15 miles, split into 3 runs over the weekend.  I’m pretty excited since Matthew and I will be doing it together with a team from Rittenhouse.
run
So, that was our day in a nutshell!  I’m excited for new beginnings, overcoming challenges, and a gracious Heavenly Father who is holding us through it all.  The Lord has done great things for us and we are glad!  (Psalm 126:3)


Leave a comment

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.

Phone Photos12
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
DSC_3382-2 2014-07-20 10.42.28
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


Leave a comment

Nothing But Good Things

This week Matthew turned 32, meaning I have known him for exactly half of his life.  This week there have also been three incredible blessings as far as his health is concerned.  About a week ago he called me in tears, because he could actually hear me over the phone with his bad ear.  We’ve been experimenting with rubbing essential oil behind his ears, and will continue to do so.  Last weekend, he was able to see all 3 (out of 4) ENT’s at Jefferson hospital in Philly.  The ear guy is pretty sure his constant infection will clear once his sinuses get under control.  The nose guy agreed, as long as the throat guy thought putting him under was no longer risky.  After scoping him, the throat guy saw improvement from last time in his subglottic region and agreed to doing surgery.  So, on the 28th he is scheduled for a thorough cleaning out of his sinuses, and another balloon dilation of his stenotic area.  Today, he saw his rheumatologist who oversees his blood-work results and is in charge of his treatment.  He told Matthew he saw “Nothing but good things”, for which my heart is leaping with joy!  After surgery, he will begin weaning himself off of prednisone.  This all-too-familiar road is marked with many promises of God’s presence and goodness along the way.  We praise Him for today and the ability to live and breath and have each other!  This was the best birthday present ever!

DSC_0916-4
This week the crocuses started to show their happy faces in the garden!  When we were outside, unbeknownst to me, Betty picked all of them into a purple bouquet.  She came running over to me with a HUGE grin on her face.  I was very tempted to scold her for picking the ONLY flowers in our garden.  God spoke to me in that moment, through her joy and smile, and told me I would crush her spirit if I corrected her in impatience or anger.  So I knelt down and met her joyous face with my own smile.  Gratitude for her love gift made it even sweeter.
2014-04-01 17.04.17-2

Amidst the sweet, there is also the crazy.  If a video had been rolling  of our dinner the other night it would have looked a little bit like this:

Jack was karate-chopping carrots intermittently with a knife and then his hand.  Next to him, sat Elsie, singing “Let it Go” at the top of her lungs.  I looked across at Nadine, making crazy faces while Elijah went on and on about how her hair looks in the morning.  In addition to his narration, he continued to blather nonsense about gaseous terrain on the planet Venus.  Not to be undone, Betty stood in the middle of it all, crying with her stuffed animal in hand, because she didn’t like what was being served for dinner.  Matthew and I looked at each other.

Sometimes this is how life rolls.  It’s rough, it’s silly, it’s beautiful.  Full of good things.


Leave a comment

Icy Poetry

This week was full of challenges, beauty, tears and smiles.  And lots and lots of ice.
2014-02-04 09.09.31
Great cases of cabin fever produce much creativity.
2014-02-04 18.23.43
When the lights flickered off on Tuesday morning, I didn’t think too much of it.  Our power-less morning meant walking over to our neighbor’s house and warming ourselves by their wood stove.  We had two fevered boys chilling on the couch, and our day felt like it was going in slow motion.  Not until later on did we realize just how wide-spread of a disaster the ice-storm created.  Overnight, our entire area came to a screeching halt.  I only pulled out my phone camera this entire week, but my mind holds the incredible beauty in its memory bank.  One shot of an evergreen tree, encased in ice:
2014-02-05 11.41.31
On Thursday, we ventured outside of our neighborhood and drove a few miles.  Instead of typical scenery, we entered a magical, sparkling world.  Glass trees, as far as our eyes could see, covered the landscape.  I couldn’t stop exclaiming.  Looking at the other-world-like richness, it seemed like my soul sang poetry.  Words only meant for the Creator of such splendor.  Words I have no ability to write.  Now I know why crystal is one of God’s choices for Heaven’s decor.
2014-02-06 13.24.14
Who knew such beauty could wreak such  havoc?
2014-02-06 13.25.35
Yet amidst the disaster, more beauty.  Fellowship with friends who still lacked electricity.  Sharing of warmth and coffee.   I know it has been a super-challenging week for many folks.  However, it’s been such a blessing to be on the giving end of the stick.  Sometimes it can be very difficult for people in this country to allow themselves to be showered with love (or water!) in time of need.  We are naturally prideful, and it can be cloaked in the tidy words of: “I don’t want to be a bother”.  Let me be very clear on this matter: If I don’t want you to come use my shower or accept a cup of hot coffee, then I would not offer!  It was beautiful to see and hear stories of different folks bunking out at other people’s houses, or getting clean in other people’s showers, or doing laundry with other people’s washing machines.  We should both be quick to offer our help, and quick to receive it when needed.  What heaps of joy for those who are on the giving end!
2014-02-07 13.46.05
On Friday, Matthew got scoped again to see what’s going on in the subglottic region of his throat.  The doctor was pleased with what he saw: nothing worsening; small improvement; no immediate action needing to be taken.  He has two weeks until he sees the ear doctor again to see if he will need a new tube put in the one side that has been infected for a couple of months.  Afterwards, we sat down at our new favorite cafe in the city: Le Pain Quotidien.  The chocolate banana bread with caramelized bananas: amazing.
2014-02-07 15.01.07
Then yesterday, it was determined the length of hairs in this house was out of control.  Everyone got their hair cut, including mama.  At first, Matthew was going to cut my hair.  It soon became clear how very different cutting wood and cutting hair can be.  After a few snips and exclamations, which clearly indicated he did not know what he was doing… I grabbed the scissors and got acquainted with the mirror.
2014-02-08 20.36.01
Now another fresh inch or two of white has fallen from the sky, and I didn’t even notice at first.  Snow is no longer shocking, and I’m slowly making friends with it.  Underneath each snow-flake, there is dirt and life and growth.  Between cold and foggy breaths, there is great anticipation of spring in the air.  Like all promises true, it will come.  Be of good courage, and He will strengthen your heart.  Wait on the Lord.


Leave a comment

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.

DSC_6231-003
Flapper girl with my motorcycle man last night.