A Good Day

Yesterday was a good day.

My little girl turned five on Thursday and my mom and step dad came out last night.  They gave her possibly the best gift for her- a gumball machine! 18519821_10158791140855074_8977889329133441059_n Shiloh is a bit obsessed with gum so it’s perfect for her.  Gabe had a good day too.  His little friend came over and he got to play and have fun like a “normal” kid for the first time in a loooong time.  Then he felt up to playing outside with another friend for another hour and a half.  Lots of giggling and running around.  It made me so happy because since we quit topical steroids nearly three months ago he has been going through hellish withdrawals and had many days where he had to carry him because he was too weak and in too much pain to walk.

20170519_182541So he had a great day and got to have cake and ice cream!!  You can see there is still some redness and scabbing on his face.  But he has come so far from these days…  20170225_083718   I got another gift as well.  Gabe had been upset about getting disciplined by his dad.  He was really pouting but I went up and cuddled him anyways.  He said, “Mom, I like being around you because you are always really happy.”  That meant a lot to me because I have really struggled with depression but I don’t want it to affect my kids at all.  I’m so glad Gabe doesn’t see that.

 

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.

Faithfulness

There is this middle-aged couple I really like that I talk to at work.  They first visited Caribou and now I see them frequently at Starbucks.  The are so cute together.  He brings her lunch and eats with her on her break.  I saw her leaving (she also works at Target) with a bouquet.  I asked how long they’ve been together (you know, expecting something like ’25 years!’) she said less than two.

That isn’t the first time I’ve asked (yes, I’m nosey, ok?!) a lovey-dovey, middle-aged couple how long they’ve been together, hoping that they are still that in love after decades- and been disappointed.  No, there isn’t anything wrong with a 2nd chance at love.  I’m happy for those couples, I am.  But we all know there is something so special about a couple that has been faithful over the course of decades and is still deeply in love.

I remember praying and seeking a couple years ago and the one word I got from God, over and over again, was just to be faithful.  I wanted a ministry.  I wanted to kick down some demonic doors.  I wanted the miraculous.

God wants all that too.  But do you know what is more important than zeal?  Perseverance.  What is more important that extraordinary miracles?  The every day miracle of being steadfast and faithful- not only to God but to the people he has called us to love.  The hearts that have been entrusted to our care.

I think God cares far more about the way we love the people close to us, than anything big and extravagant we could do for him on the public stage.

In a world where the divorce rate is 40-50%, we are called to be faithful.  When 1/3 of children are being raised by a single mother, God wants us to invest in our families.

God wants us to do big things.  But not to the neglect of the little things.  Our most important ministry is to our own family.

In a world where divorce is almost celebrated and affairs are glorified in secular entertainment- let’s stand out as the exception.  Let’s be steadfastly faithful.

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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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New Years Resolution

Through-out my faith walk, hardships have always propelled me closer to God.  But honestly, this past year, I’ve allowed current trials to come between us.  My super spiritual explanation is that God wants us to follow and trust even when we aren’t getting what we want.  Even if what we want is something noble and right.  I am praying and believing for my son to be healed from his long, tough struggle with eczema.  It hasn’t been just a minor skin irritation- but multiple staph infections, trips to the E.R., sleepless nights, etc.

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My Family

 

He still has eczema and I am still praying.  My stance is that sometimes (often) God walks with you through it.  “Everyone will be salted with fire.” Mark 9:49  Like that old saying, “For those headed to Heaven, Earth is as close as we will get to Hell.  And Earth is as close to Heaven as those headed to Hell will ever get.”  So I’ll let a bit of fire refine and ‘salt’ me now, knowing that there are great things in store.

I know though that I am incredibly, lavishly blessed and loved by God.  Walking through some stuff.  Still a bit of a spiritual hot mess.  But loved dearly as a daughter of the King.

The other morning I got up early to pray and read my bible for the first time in too long.  I felt God’s presence and favor so strong.  It was a fresh reminder that it is a privilege and joy to walk through life with Jesus Christ.  Many people spend their lives in fruitless pursuit of truth.  I know exactly where to find him and He is eager to meet with me.

So this New Year for me brings hopes of getting closer to God.  To chose trust over fear.  To allow God to work in and through me.  To see Him do great things this coming year.

“See, I am doing a new thing! Now it springs up; do you not perceive it? I am making a way in the wilderness and streams in the wasteland.” Isaiah 43:19