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Milk Bath

This morning I woke up a little after 4 o’clock, feeling very uncomfortable and wet.  “Oh no,” I said out loud, not really sure why I wanted sympathy, but just that I did.  Matthew was sleeping too soundly to hear me, though.  Yesterday I had washed and line-dried our sheets.  Of course.  This morning I woke up in a puddle of milk.  Which meant one thing: Harry had slept through the night for the first time in awhile.  He had been doing really well before we did our traveling to Nevada, then Tennessee.  So, I was glad for the sleep, but super uncomfortable.  Somehow I managed to go back to sleep for a couple more hours, and woke up to a chattering baby, who had happily slept 12 hours.  I had prayed the night before with the girls: “Father, please help Harry to just sleep.  He’s chubby enough and doesn’t need the milk.”  We all burst out laughing at the cute picture instantly painted in our mind’s eye: thighs for days that squish and squish.  He answered our prayer, though!

Harry is certainly chubby.  We squeal over him every day.  He is seven months old and loves to babble and crawl and get into everything everyone is doing.  He is a tiny human vacuum cleaner.  Whatever doesn’t stick to his onesie, gets put into his mouth.  Today alone I’ve fished out a tortilla chip, a rock, a dice, and a bug.  This morning he found an apple core and was like a puppy who had found a bone.  I watched him chomp on it for awhile, but once he started to bite off pretty substantial pieces, I had to take it away.  He did not like that.  He is a foodie through and through.  He eats and loves whatever you put in his mouth.  We do a little pureed baby food, but he would prefer small bites of chicken, or curry, or eggs, or chili, or lemons.  He loves them all!

This week the two oldest kiddos are away at teen camp.  It is so quiet!  Betty burst into tears yesterday because she missed Nadine so much.  It is SO much fun having teenagers.  There are stormy moments, but we are all learning this together.  We encourage communication, not stuffing of feelings.  If someone is being selfish, serving someone else is a wonderful antidote.  Late night porch talks are their favorite thing.  A big change is on the horizon this year.  Nadine and Elijah will both be going to Linville Hill Christian School this fall for high school.  It was a huge decision but one we are all excited about!

Jack had an acrobatic accident last month which landed him with a spiral fracture of three bones in his right hand.  Nadine recorded the flip before the flip that broke his hand.  It was impressive.  After a month in a cast, he has only one more week of a brace.  He is back to flips and tricks.  Can’t keep a strong young man down!  The only positive side to having his hand in a cast was that he was opted out of writing assignments the last month of school.

Elsie is my resident interior designer.  She rearranges their room almost weekly.  She actually rearranged the dining room last month with smashing success.  I came home to a new look and liked it even better than how it was before!  She has an eye for design with clothing too.  She is starting to bake more, though she prefers riding her bike or swimming.

Betty is a proud second grader.  She loves to read and reads well! Sometimes the words that pop out of her mouth surprise us with their seasoned-sounding wisdom.  Other times she just makes us laugh with her dry sense of humor.  The other day the girls were walking around with their clipboards taking orders and having us sign our names a hundred times for various reasons.  She came up to me and asked if they could have a bowl of pretzels.  “Sign ‘yes’ or ‘no’ next to your name.  Don’t write maybe.  This is a yes or no question.”  I about died.  Then she asked me, “Is your name Amy?  Can I call you Amy?”  This morning we were moving out a bookshelf I had sold online.  Betty took a look at it and said, “How old is that?  It looks like it’s from 1994!”  The laughing emoji face is constantly circling around my head when that girl talks.

This morning Matthew finished up with his third out of four infusions.  His voice seems to be a tad bit better, though we only have symptoms to base any improvements off of right now til he gets his next round of bloodwork done.  We sometimes battle discouragement, but we know that doesn’t get us anywhere.  Yesterday I read a familiar and comforting verse: “Thus far the Lord has helped us.”  It always pops into my daily reading at a time when something larger than I can comprehend is happening.  I remember when Matthew and I were dating and it seemed like we would never be able to get married.  He was, after all, a teenager.  It was one of the hardest waiting times of our life.  Each season is a stepping stone to the next.  Like trees coming to life in spring and then preparing themselves for fall and winter… each season has a purpose and a beauty all its own.  We can declare with surety and confidence that up until today, the Lord has helped us.  He will never quit being Who He is.  He is worthy of our trust and confidence.

We’ve done a lot of traveling already this year!  Matthew and I enjoyed traveling to Las Vegas for the annual Plexus convention.  I’m over halfway through my studies to become a CNHP (Certified Natural Health Professional).  Ever since highschool, I’ve been passionate about how our bodies work.  I’m absolutely thrilled to have this avenue of study to learn more and this area of work to help people with gut health!  It’s so exciting to hear all of the stories that come my way every single day.

Hopefully it won’t be so long between the next journal entry!  Here is a small camera dump of the past month!


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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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Sixth Annual Kids Day plus

Today I left the farm with two bushels of tomatoes, and lots of onions, garlic and peppers.  There is something incredibly rewarding and delicious about canning our own tomato sauce each summer.  Nadine was a wonderful help, as she always has been in the kitchen.  We got through one bushel together before I sat down, put my feet up with a cold dandyblend beverage, and let her finish the second bushel.  We chatted about life.  It was a special time together, and I appreciate her youth and helpfulness!  Having teenagers is great!  The entire process took about 8 hours, but we now have tons of delicious roasted tomato sauce canned for the winter.  Not exactly the most convenient day to can and get the kitchen as dirty as can be.  Matthew is busy installing a new hot water heater in the basement, which means we temporarily have no water.  I’m soooooo excited to have hot water again!  Our tank has been leaking for a while, and he is replacing it with a tankless water heater, which confuses me to no end.  Which is why I can the tomatoes and he installs the water heater!  Yes, we did about forty jars, and yes, that one green-lidded fella bothers me too.  It’s the Where’s Waldo of my canning jars.

Processed with MOLDIVYesterday we celebrated Kids’ Day.  This is our sixth year doing it, and it is never a specific date… just someplace in August when the time is right.  The inspiration of this day is due to my sweet friend Ruthie.

It was a rather scattered morning, in which we found out the coupons we had been saving for this specific date were expired.  But we still ended up driving to New Jersey to venture around Six Flags Great Adventure for the day.  It was so fun that we never even got a picture of the kids on their special day.  Most of the day was spent in two groups: the three oldest, who were tall enough for all the rides, and the short crowd who wished they were, but made the most of as many rides as they could.  Each group was accompanied by either a parent who doesn’t really care for rollercoasters because it makes them somewhat sick, or a parent who adores rollercoasters, but happens to be growing another human being and wasn’t able to do any of them.  I’ll let you take a stab at who’s who there.  We shut the place down, and made many memories in the process.

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The Ferris Wheel was the only ride Mom could do, which was fun with the little girls. We started school, and much is done around our table. Elijah had a sweet tea time with the girls to make up for a friend who was unable to come. My diligent artist, learning how to create 3D drawings and illusions.

As the month comes to a close, I relish how beautiful it was.  Playing.  Splashing.  Growing things.  Experiencing imncredible heights.  Being with friends.

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There were a lot of super difficult days, to be honest.  A few in particular which threatened to unravel me for no apparent reason except to remind me that this is not my home.  I’ve also been remembering how different our life was three years ago, when Matthew’s life was hanging between life and death.  It’s not fun to go back to that place, even though somewhere in my deep subconscious I know that this week was the week.  As hard as it all was, it was what God used and is using to bring Him much glory and many people to a place of freedom in their health.  We’re so excited for the stories emerging about how God is changing lives through Plexus!  We share our story, never knowing what He will do!
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Baby “Chip” is growing so much!  I’m twenty-eight weeks along already, and have only begun to realize that we should start getting ready to welcome a baby into our busy little home!  I feel great, though huge, and am enjoying his antics which go on every night around the time I’m crawling into bed.  He is so loved.
2016-08-02 09.59.18-2Have a delightful last few weeks of warmth and summer!


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Let Freedom Grow

A word which has shaped and defined this year is freedom.  I’m seeing it played out in so many ways throughout my every day.  For instance.  Today my skirt fell off.  Under many circumstances, this would have been categorized as one of my most embarrassing moments.  Thankfully, I was *only* outside in the front yard, having just walked out to our van to grab something and bring it inside.  The mailman wasn’t there.  No one was walking by.  The neighbors weren’t mowing their lawn.  I speedily pulled it together and ran inside.  This can be categorized as freedom, though not exactly what I had in mind on January 1st.  My box of wrap skirts have taken center stage in my wardrobe.  And I will not let a small setback, such as one falling off of me, deter me from wearing them.  My twenty-week-belly loves the wrap skirt idea.  2016-06-30 17.31.40This week the kids have been able to feel baby Chip move so much.  Their faces are priceless!  Jack sat there with his hand on my tummy for a couple of minutes when all of a sudden his hand shot back and he looked at me with his eyes and mouth about the same width.  It was great!  As I sit on the front porch this evening after a busy day of mommy-ing, attacking the weeds in my garden, and doing the regular mounds of laundry, I feel some kicking.  Baby Chip most certainly had a growth spurt this week, because all of a sudden I make a funny noise when I bend over, forgetting my front has expanded into my ribcage when in that position.  That, and I keep stubbing my toes when I walk upstairs.  I think it’s because I don’t lift my legs as high right before I take a step.  Pretty much on the dot, every night around 11pm the gymnastics starts, and I sit with my hand on my belly, in wonderment at another life bursting with joy inside of me.  Freedom.
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For the past six weeks, Elsie has had a cast on her right arm.  After about a day of figuring out how to do stuff with a perpetually bent arm, she quickly resumed life with a cast, almost as if she had none.  She literally lets nothing hold her back.  Even without the use of her thumb, she figured out how to tie her shoes, do monkey bars, climb, ride a bike and even play baseball!
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Monday was a big day for her, when she was liberated from its confines.  Freedom.  They say a picture is worth a thousand words:
IMG_8590[1]This week I had to say goodbye to a dear, sweet friend.  Our husbands met at a spin class about 8 years ago, which was definitely a God-ordained meeting, since I don’t think either of them have been to a spin class ever since.  Our kids are the same age, and we’ve watched and prayed eachother through some mutually serious health issues.  She is the friend who introduced Plexus to me, and after watching her journey to health and freedom, jumped in to join her.  She has been an incredible source of joy and encouragement and wisdom to me the past few years.  I love how in Heaven others will truly find out how much impact they’ve had on your life.  Thankfully Tennessee isn’t too far, but knowing I can’t just pop over makes me get a little teary.  Letting loved ones go and be and do what they’ve been called to is one of the hardest things on earth, I believe.  Yet, letting them go gives you more freedom to love stronger and deeper and further than before.
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Once a week Nadine has been getting back into the saddle.  It’s the highlight of her week.  She gets to ride with one of her best friends as well, which adds all sorts of amazingness to her week.  To me, it’s scary.  To her, it’s freedom.  She continues to be a huge source of help to me around the house and is growing in her babysitting abilities.  nrw
Today our not-so-bitty-Betty lost her first tooth!  She is growing up, embracing her big sister role already, and is somwhat of an old soul.  Sometimes I look at her and wonder on what wavelength she communicates to God.  He must tell her things I can’t quite fathom.  If you’ve ever had a conversation with her, you might understand what I’m having a hard time putting in to words.  Growing up requires a little bit of pain, which usually results in more freedom.
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Speaking of growing up.  There are these two characters who live in the attic, who often sound like a small herd of elephants when they come down the stairs.  But they are in actuality, boy-men.  Boys trapped in bodies which are swiftly becoming men.  Boys who dream of motorcycles and ammunition and muscles and big stuff like jobs.  Jobs that pay money so Elijah can get his pilot’s license and fly his friends wherever they want to go.  It’s fun to listen to their dreams and know that many of them will come true if we never plant seeds of doubt into their fertile minds.  Freedom.
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Apparently there is a “look back and compare an old picture of you and your spouse to now” thing going on over on facebook.  So, for fun I decided to do just that.  I practically died when I pulled out this doozy of a photo from nine years ago!  Matthew had been sick for about a year and a half, was on high doses of toxic meds, and I was barely surviving as a mom of three.  How incredibly blessed and grateful I am for the road we have traveled, and for the way the Lord has helped us navigate the stormy path.  I wouldn’t trade it for anything.

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We don’t even know how many prayers have gone up for us on Matthew’s behalf.  So many.  There were times we literally felt like there was no way to go on.  We praise the Lord for the gift of health.  We know we are never guaranteed another breath.  But for every breath we are given, we praise Him!  Matthew is out running right now, his reflective vest on, heart pumping, lungs breathing, windpipe open.  Not something we would have thought about before.  It is the storm which has made our love so strong.  It is being in the pit which has made the air above so clean and worth savoring.  2016-06-28 23.14.09
We pray for open hands to receive both the sickness and the health.  The richer and the poorer.  Til death do us part.  In doing this, there is great freedom.

 


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We Waited A Decade For This Moment

Today held one of those moments in life which freeze a forever picture onto your mind’s eye.  Matthew had a follow-up doctor’s appointment with a couple of his ENT specialists down at Jefferson.  All the kids came along, and we maneuvered the parking garage, elevators, city blocks and waiting room chairs.  The first doctor took a look down his throat, through his nose.  I have been to every appointment where he has been scoped, and have seen enough inflammation to know the moment the picture came on the screen, that this was “normal”.  I videoed the procedure and now have something with which to compare it.  These are screen shots of a cell phone video… but if you have any sort of medical background you’ll probably be able to see the difference between the two:

Matthew's vocal chords, 2014 and 2015.

Matthew’s vocal chords, 2014 and 2015.

His first doctor said, “What are you doing?”  Matthew told him he’s been keeping a pretty strict diet, exercising, plus added some supplements which have been really helping.  “Well, whatever you’re doing, keep doing!” were his instructions.  He said he had never seen his throat and nose look that good.  In his words: “I see no evidence of disease at all. There is no inflammation.”  He was so pleased.  The second doctor was even more flabbergasted. Especially when he learned Matthew is no longer on any prescription meds.  “There is no crusting in your sinuses whatsoever.  Not even a bit.  It looks completely clean as a whistle.  What are you doing differently?” he asked.  So Matthew told him about Plexus and how we’ve been taking supplements which target gut health, inflammation and balancing blood sugar.  He was super interested and wanted to know a bit more about it.  Then he said, “Keep doing what you’re doing!” and asked for more information.  This journey of a decade has seen us sitting in MANY waiting room chairs.  More doctor dates than I can count.  I am so thankful for the many people who have prayed and supported us through this journey.  It feels like the end of a really difficult race, yet I know it’s actually the beginning of a new lap in life.   One of the hardest turns was two years ago.  These verses spoke into the darkness which threatened to swallow us in that hospital room: 
We were under great pressure, far beyond our ability to endure, so that we despaired of life itself.  Indeed, we felt we had received the sentence of death. But this happened that we might not rely on ourselves but on God, who raises the dead.  He has delivered us from such a deadly peril, and He will deliver us again. On Him we have set our hope that He will continue to deliver us,  as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many. (2 Corinthians 1)
Today I feel like the last part of those verses has come to a sort of fruition.  We know there has been much glory and praise given to our GREAT God and deliverer today.  Because of what He has done through our circumstances, we are unable to keep our mouths shut.  

I want to take it a step further here.  We feel like nothing which has happened to us has been for nothing.  If our story helps one person, it has been worth it.  Yet, we don’t want to just be an encouraging story you read.  We want our story to stir you into action.  Yeah, it’s not easy to change your lifestyle, eat a whole new way and exercise when it’s almost never convenient.  And if I used strong language I would insert it here.  It also SURE ISN’T EASY to sit in a hospital and wonder if your life will be taken away or spared.  That changes you.  It changed us to action, research, questioning everything, and trying new things.  Our story is not over, but it’s been an incredible page-turner so far.  Everyone’s health journey is SO personal and intimate to them.  But if I could look you straight in the eye and beg you not to wait until it’s too late to get a hold of your health, I would.

We’ve been trudging through a pile of puzzle pieces for so long, and both feel that Plexus has been that last missing piece, bringing everything together.  Because his gut is healing, other things are happening.  In four months, Matthew feels better than he ever has on any prescription meds.  The amount of reading and research I’ve done has solidified my belief.  Now to have two elite specialists giving us their thumbs up: incredible.  2015-09-26 11.59.53

I love this picture of Betty and him counting to 100 while they waited for the doctor to come.  I get choked up in humble thanksgiving that our children are blessed with such an amazing dad.  His faith, endurance, and gentleness stand out to me the most.
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Thank you for praising with us together tonight!


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365 Days From Then

The van is cleaned out, laundry is going, and sand still sticks to the bottom of my bare feet, escaping from every corner of every bag brought home.  Our skin is more tan and our hearts are full of good memories.  A year ago, our lives looked quite different.  I am blown away at God’s mercy and grace to us this year.  From sparing Matthew’s life, to getting out of debt, to providing a “new” vehicle for us… the list goes on.  Thank you, Father.  A year ago, instead of vacation at the beach, we hung out in a hospital room.
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This week was quite different!  It was sung to the tune of ocean waves and time away as a whole family.  We have never had a vacation for a week with just ourselves in all of our married years!  A lovely opportunity came up for us to do so, and we gladly accepted the offer.  I think the last time I played in the ocean every day for five days in a row was… this week!  Like, IN the ocean, not just on the beach watching one of my babies play in the sand.  Elijah actually came up to me in the ocean and laughed out loud, “I love seeing you all wet, Mom!”  I played with the “biggie board” as Betty calls it, and made an entire city of sandcastles one day!

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Our week was full of front-porch talks, VW van sightings, a ride on the log flume with my two littles, bike rides, “biggie boards”, a visit from dear friends, a visit with family one day, and delicious food.  Unfortunately, I forgot to pull out my camera except for a couple of days.  I did catch a few extras with my phone, here.
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It is hard to see the week come to an end.  But new adventures await us as we start school in earnest, and an exciting change is in store for Matthew next week.  I will share more about that later.


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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!

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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.
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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.