Spring, Sadness, Hope

I watched this video yesterday and broke down crying.  It pulled on my heart strings because I know exactly how each of the moms feel.  You struggle privately and have to put on a brave face for your kiddo.

Going through TSW is incredibly isolating because it isn’t a well known condition.  People have never heard of it.  Whenever I post updates or pictures I always get people saying things like, “OMG!  That’s an allergic reaction!”  or “coconut oil took care of my small patch of eczema!”  Insert head-slap here.

Also not particularly helpful is reaching out to the mother of a sick child….trying to sell them something as a MLM distributer.  We’ve tried every lotion on the planet at this point, I’m sure yours isn’t going to be the magic bullet that will end his suffering.  But….um thanks for offering??

Or posting progress pictures.  I always point out that’s he still has a long way to go.  But still people “be like” Hallelujah!  He’s finally healed!!  Um…slow down.  He’s still very much suffering and going through this.  I just like to post pictures when there is any progress to encourage myself and let everyone else know how he is doing.

Speaking of that, he has come a long way.  When you deal with something like this it is easy to fall into hopelessness because it just goes on….and on.  He’ll make major progress and then flare again.  Our hopes will rise, then get squelched.  But I know every single day we weather brings us one day closer to him being healed.

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This was about 1 1/2 months ago.  Yep, RSS is that horrific.
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That’s him now.  Not healed but making progress!

At the moment he is flaring on his face pretty badly.  He doesn’t want to leave the house, because he is so embarrassed.  He’s lost weight off of his already very skinny little body.  In spite of seemingly eating 24/7 he is very thin and his clothes hang off of him.

I also believe he is healing on the inside too.  His organs became steroid dependent as well.  Every morning he has a hard time getting going.  We need to carry him out of bed, get him breakfast, and then bathe him.  I still need to wash all his bedding every single day.  Because every night it gets bloody and crusty and covered in his dead skin.

We are hitting this thing from every possible angle.  Probiotics, vitamins, homeopathy, bone broth, garlic, sea salt….just every thing we can do to help him.

That’s been our focus and it’s really brought us all together.  I feel closer to my husband than ever.  I thank God for our solid marriage.  He has been my partner in this 100% and is so quick to sacrifice for his family.

Most days we are doing pretty good considering.  When you’re going through a long term crisis everything else get’s backburnered.  We barely celebrated Easter.  We haven’t really been able to go to church in ages because it takes so long to get Gabe going in the morning.  I was ok with that until I drove past a cross with ribbons billowing in the wind the Monday after Easter.  I felt an unexpected tidal wave of sadness at not being able to celebrate my favorite holiday the way I would have liked.  It threw me into a bit of a depression for the rest of the week.

But I know that next year will be totally different.  Next year we will go all out for Easter.  Next year we will properly celebrate our Anniversary.

We know that our faith has carried us through this and also all the many prayers offered up for Gabe.  Thank you everyone for your continued support and prayers!!

A Quiet Sort of Romance

I quit my job at Starbucks so I could be home full time.  Gabe is still struggling daily with TSW.  Half the time we have to carry him around.  There is loads of laundry to be washed daily.  Lots of skin to be vacuumed.  And of course he just needs a lot of care and attention.

We are 2 months in to this journey and it has been a huge drain on us- in every way.  My husband said at one point, “we are just going to have to give each other extra grace right now.”  As sleep deprivation piled up and emotions ran high we have gotten in to petty arguments and snapped at each other…. but more than that we have loved and supported each other through this.

Our 10 year anniversary is this Friday and it will likely pass without much fanfare.  We wanted to go on a trip together and I was hoping for some anniversary “bling”…. but that was back before TSW took over our lives.

That’s mostly ok with us.  We’ve never really done things conventionally anyways.

The real gift is ten years of happy marriage to the man I love.  You get married hoping that that person will love you and stand with you through the good and tough times.  You get married so that you have a partner in life, that you never have to face the difficult things alone.  You get married hoping to create a family and a lifetime of memories.

I’ve found that in my marriage and that is enough.  A quiet sort of romance.  An enduring love.  Ten years in and I still enjoy his company.  He’s still amused at my antics.  I still don’t want to let go when we hug.

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Our first Easter as a Family, 9 years ago

When I met Tim I was 20 and a single mom to a toddler.  I had been dating without much luck.  When I met Tim, I knew from the first date, that he was “the one”.

The INFJ in me loved his humility and lack of pretense.  That first date I saw the true him.  He was authentic, honest and kind.  He is truly honest to a fault.  He is just a good person.  He didn’t hesitate to take on a step son.  When we went through a difficult custody battle two years into our marriage he sold his beloved truck (that he had just finished paying off!) so we could hire a good lawyer.

“Every good and perfect gift is from above, coming down from the Father of the heavenly lights…” James 1:17

I know Tim is just that to me; a good and perfect gift.  17951693_10158638684060074_7487367056105280349_n

Honey, I love you and I am so blessed to be your wife.  Through good times and bad, there isn’t anyone else I would have by my side.

I know things will get better but until then, I am just happy to have you by my side.

I love you so.

My Power Source

I haven’t written in a while.  Summer is always a busy and chaotic around here!

I also switched jobs.  Now I work part time as a barista at a Target Starbucks.  Honestly, the job I’ve wanted for a long time.  I love Target and I love Starbucks!  I also love getting a discount, yay!  13626415_10154249884502429_8547029261097152568_nMy friend snapped this on my first day.

My husband’s brother and his family visited for the first time from Virginia a little over a week ago.  It was incredibly special.  We had a blast, hanging out and doing tourist-ey things with them.

Tomorrow is a big milestone for me.  I’ll be turning 30.  I’m kind of sad to leave my 20’s behind, but older = wiser, right?

I watched the movie ‘Miracles from Heaven’ a few nights ago.  At about 20 minutes in I started crying and couldn’t stop.  It just touched so many nerves for me.  The child in pain, the mom losing hope- it’s definitely been where I’ve been at for a long time.

My 7 year old son, Gabriel, has had severe eczema for years now.  It has been so tough for him.  Lately we haven’t been letting him play outside because he reacts so strongly to the allergens.  His eyes are always bright red lately.  There’s times where he can’t sleep because the itching or pain is so intense.  And all of this with daily anti-histamines and steroids and expensive lotions.  It feels like a never ending nightmare.

Watching him suffer, day after day, had really hardened my heart towards God.  Gabe had asked me, “why did God let me get eczema?” and I’m at a loss for words.

No, it isn’t as serious as what the Mother was facing in the Miracles movie.  But his condition has been devastating for him.  To the point that when we went to meet his cousins (in 90 degree heat) he cried because he wanted to wear a sweatshirt to cover up all the redness, bumps, and open sores.  He is also limited in his daily ability to just be a kid because the itching and allergies make him so miserable.

We’re still going through it.  There’s no end in site.

I think most (if not all) Christians face a make or break trial.  Something devastatingly hard, something that never seems to end, something that hits home.  Those times test what we know to be true.

God was speaking to me through that movie.  I realized I’ve been ‘under’ the trial and the devil was running roughshod through my life.  In my pain and sadness I was distancing myself from God, my power source, and leaving myself very weak and vulnerable to attacks from the enemy.

“Now if we are children, we are heirs- heirs of God and co-heirs with Christ, if indeed we share in his sufferings in order that we may also share in his glory.” Romans 8:17

I have resolved to hold tighter onto Christ through this.  I believe in miracles.  Especially the quiet ones, where God uses tough circumstances to do an incredible work in us.

My sweet boy, with his Daddy….

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Puppy Love

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I haven’t blogged in a bit because I have been busy with our new puppy, Copper.  Our kids have been begging for a dog for years.  Last year we went the chintzy route and got a couple pet rats.  About the fourth time they bit one of the kids they went back to the store!  SO I finally twisted my husbands arm- er, talked him into- a real live puppy.  Not just any puppy.  A golden retriever.  Like and 90’s kid I grew up watching movies that featured talking golden retrievers and have always wanted one.

Right now he is super cute and super annoying!  He is really mouthy, which I guess is common for a hunting breed.  He is also sweet and follows me around the house.  He’s only had a few accidents and seems to be doing well so far with the training.  I can’t wait till he is grown and calm and the famously easy going, happy family dog.

So here are some purely gratuitously cute pics for your enjoyment… 🙂

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Dark Tunnel

Today I’ve been thinking about brokenness in life and finding glimpses of light in dark spaces.  Cheery, no?

Life is heavy.  Life is hard.  Sometimes it all, plus the unrelenting pull away from God can all be too much.

I have a child with aspergers, high-functioning autism.  It’s never easy but sometimes it is just so hard.

Another child has eczema an it is a daily struggle to keep it under control.

I have my own health issues- which means I am on a very restricted diet or  I feel awful.

I tend to get sad and withdrawn because of the weight of it all.  So often we bear our burdens alone.  No one can totally understand what we go through.  Or we get platitudes or the dreaded unsolicited advice.

Plus the pressure we feel to act like everything is ‘ok’ when it isn’t.  Suffering is just part of life.  I wish we could just let things be what they are without trying to put a positive spin on it.

But if we are real we risk being judged or having our pain minimized.  Like Job.  We are uncomfortable with suffering so we try to come up with a quick fix, an answer, a reason…when sometimes things are just broken.  Sometimes prayers just go unanswered.

If we can’t be real in our brokenness and honest is our faith even real?  Jesus was the ‘man of sorrows’.  He understands even when no one else does.

“Truly I tell you, at the renewal of all things, when the Son of Man sits on his glorious throne…” Matthew 19:28

I’ve been thinking about that a lot- that there is going to be a great renewal of all things.

Every burden lifted.  Every tear gently wiped away.  Every last broken thing gloriously made right.

In the mean time I pray that my own pain and brokenness makes me a more compassionate, merciful, caring person.

No one has it all together.  We all have private hurts, pain, and burdens.  We all need mercy.  I think pain can be like the surgeon’s knife- cutting out the pride and arrogance and leaving something a little messier and tender and Christ-like in it’s place.

“Lord, all you asked us to do was to believe and follow you.  Help us to do that in spite, or even because of, our circumstances.  Help us to love.  Help us to be beacons of grace in a harsh world.  Help us to be strong until you come to set all things right and make all things new.”

 

 

Affair-Proofing a Marriage

My husband and I were talking about the latest christian sex scandal *sigh* again Josh Duggar is the news.  If you haven’t heard, a (gag me) popular site that links up people seeking other cheaters; Ashley Madison, had a huge data breach.  Tons of private info was leaked online.  Josh Duggar was one of literal millions seeking affairs.

It’s a very public display of moral failure.  Especially since Josh had been espousing family values with the Family Research Council.  The biggest failure isn’t to his public image, the Duggar brand, his career- it is to his wife, Anna, who is now dealing with the pain of betrayal and the humiliation on a national stage.

Tim and I prayed for them.  We don’t judge Josh because while what he did was incredibly wrong- we all have that potential inside of us.

I think there were two things that ‘allowed’ this to happen.  First- Josh has been in the public eye since his teen years and has probably felt pressure to keep up a good christian front for the sake of his family.  So when he started dealing with pornography addiction he kept it quiet instead of seeking help before it turned into adultery.  I also think that Satan targeted this family in a big way because they have such a huge platform for their Christianity.  In Josh’s own words, he had allowed the enemy to build a fortress of immorality in his mind.

We need to be willing to ask for help even at the sake of our ‘image’.  So often a moral failure seems to come ‘out of nowhere’.  In reality, Satan has been chipping away at that person’s defenses for years under the cover of their ‘good christian’ front and it was a carefully orchestrated fall.

The Bible says that our enemy is cunning and that he sets snares and pits in our path.

The best way to avoid falling into one is to have a degree of transparency and accountability in your life.  A close friend, Pastor, prayer partner, or best of all- your spouse.

Tim and I have really opened up communication about our areas of stuggle this past year.  And we are closer and stronger than ever.

We all struggle.  You are not a freak.  But God doesn’t care so much about your ‘front’ as he does what is going on in your mind and heart.  “You desire truth in the innermost being” Psalm 51:6

There needs to be a daily coming before God and his Word.  We need to be honest with ourselves.  There are some temptations that we can’t avoid but there are many that we can.  Don’t overestimate your own strength “So, if you think you are standing firm, be careful that you don’t fall!” 1 Cor. 10:12

What the enemy means as a ways to bring you down, God is allowing as a test.  If HE is allowing the test he has given you the means to overcome it.

“No temptation has overtaken you but such as is common to man; and God is faithful, who will not allow you to be tempted beyond what you are able, but with the temptation will provide the way of escape also, so that you will be able to endure it.” 1 Cor. 10:13

Another biggie is appreciating your spouse and not taking them for granted.  Making it a practice to focus on their good qualities and being thankful for them is huge in strengthening your heart against temptation.

Marriage is such a gift.  God even used it to illustrate Christ and the church.  If you are married then God has given you this person to experience physical, emotional, and spiritual intimacy with.  Make sure all those important needs are being met according to each other’s needs.

Allowing God to direct your steps is huge too.  God is not going to lead you into disaster.  Many end up there after ignoring many warnings signs along the way.

As Josh is finding out, in his words, “You get to choose your actions, but you don’t get to choose your consequences.”

That is why it is not unwise to consider carefully what would happen if you cheated.  Who it would affect and how.  I have three kids and I want them to grow up in the very best environment- with parents that love Jesus and each other.  More importantly, I love my husband and I really think I would rather die than betray him like that.  And most importantly I have a God that loves me and is for me that I do not want to let down.

The amazing thing about the Gospel though- is that there is hope and redemption beyond the pain.  We’re praying God keeps them through this and they come through humbled but strengthened.  God can take our heep of ashes and make a crown of beauty.  He’s just amazing like that.  wedding-all

Dad’s Weekend

Today we got to spend some time with my and Tim’s dads.  I am grateful that they were/are good men and are now great grandpa’s.  That’s my ‘Papa-bear’ Patrick Terrell. 20150621_151841_resized He grew up in southern Minnesota with a hard-working, working class Irish Catholic family of 16.  One of my favorite memories of Dad is us watching ‘Little Princess’ and crying together.  He denies it but I saw the tears!

This is Tim’s dad, Stephen Schwartz (with Shiloh). 20150621_135815

He has German-Jewish ancestors from the black forest.  Tim has funny stories of his dad’s epic bartering skills.  The kids adore him.

And then there is the favorite ‘dad’ in my life, my husband.  He’s been a great step-dad to Michael and the best Dad to our kids.  Once, we were talking about life and death scenarios.  He said that if we were out camping or whatever and ever got attacked by a bear he would purposefully run slower so I could escape.  Silly story but I know he would.  He is faithful, hard-working, responsible, and fun.  20150614_151730_resized

Honey- I love you.  You are such an amazing husband and father.  I am so blessed to get to spend my life with you.  Happy Father’s Day!