Jumbled Thoughts

Sorry guys, I haven’t blogged in forever. 

**((warning, graphic pictures included))**

We were on vacation, we’ve had house guests, kids are home all day… plus my husband took over my little office space because he had to get some work done on his office.  So I’ve been mostly kicked out with no decent place to write.

Topics I want to write about tend to swirl around in my head for two days, max.  If I don’t write within that window, the thoughts tend to expire.  So this is, unfortunately, going to be a jumbled up mess of all the things I’ve wanted to blog about for the past month.  

First off, Gabe has been doing SO much better.  We were really worried we were going to have to cancel our vacation plans.  He was basically covered in staph-infected wounds over about 40% of his body.  But a couple of new treatments, and a lot of prayer, and he is doing really well.

We were worried about how he would handle vacation but he actually got better with the clean and super humid lake air.

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The orange stain is from his astaxanthin supplement, it stains like crazy!

He’s really continued to improve since then.  He’s made crazy progress since this spring when he was in really, really bad shape.

Sorry, I know it looks terrible.  But this is what we were living with.  Round after round of antibiotics failed to clear it.  Doctors were at a loss.  He supposedly was negative for MRSA- but what else is staph that won’t respond to all the antibiotics thrown at it?

For anyone struggling with MRSA, eczema, psoriasis, etc. what we did that helped was using smart skin spray for a month to kill the staph overgrowth and then mother dirt probiotic spray to replenish his stores of good bacteria on his skin.

He’s made so much progress but Gabe is definitely a highly sensitive person if I’ve ever met one.  This whole thing has not been easy on him.  It’s been traumatic.  He very much is still stuck with a “sick person” frame of mind.  He is scared to push against his limits.  Scared to try new things.  Even scared to wear a t-shirt.  Through this whole thing I’ve had to rock a mix of good cop/bad cop mothering.  Like knowing when he had outgrown a certain need.  Like needing to be carried to the tub in the morning (ow! My back!) or needing to have his skin covered 24/7.

Image may contain: 1 person, smiling, standingSo, I forced him to wear a t-shirt yesterday.  He fought me on it and cried and hid in his room for like an hour.  His little neighborhood friend was waiting for him to come down to play with her and she assured him that she didn’t care if his arms were red.  His older brother talked to him.  His dad talked to him.  Everyone talked to him!  It was a huge deal when he pushed past his fear and came downstairs, in a t-shirt, for the first time in well over a year.  It was a huge mental step for him.  He even went to Target and realized that no one stared or recoiled in horror.  He willingly put on a t-shirt again today.  Good thing, because MN summers can be pretty brutal.  Today it got up to 95 degrees F and his refusal to wear t-shirts has had him very limited in how much time he can spend outside.

The saga continues.  He still has a ways to go.  We know it’s very likely that he’ll flare again in the fall when allergens are bad again.  But we are definitely enjoying the progress and healing he has experienced!

This past month I got to spend a lot of time with my siblings.  Since we are spread out and most of us have kids, we really haven’t spent time all together like that in nearly a decade.  It was really great, of course.  But there was definitely an undercurrent of sadness.  Life can be hard and I think we all share a strong natural melancholy aka depression- that we all cope with in different ways.

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Gabe, Myself, my brother Aaron

Through this thing we’ve been going through with Gabe…and more than that; through my own struggles with depression stemming from genetics (fosho) and childhood trauma… I’ve definitely struggled in my relationship with God.

There’s been times where I didn’t know how or what to pray.  I just didn’t have the words or the faith.  But even then I knew God was with me.  I would open my mouth and sorrowful prayer language would emerge, maybe too Holy for human ears to decipher.  I would know, in my soul, that the Spirit was there and interceding for me in that moment.

I recently read through the book Infidel by Ayaan Hirsi Ali.  It’s really an incredible book.  Ayaan was a girl born into Islamic tribal culture in Somalia.  When she described the barbaric process of FGM that she was forced to undergo, I felt such waves of shock and revulsion rolling over me that I had to put the book down for a couple of days.  The abuse women are subjected to in the name of Islam is beyond words.  But for me, the saddest part of the book was that she had thrown herself into Islam, looking for answers.  She said her 5 daily prayers.  She was good and obedient and submitted.  But she never encountered the presence of God.  She became an atheist.

It makes me more thankful, more aware; of how near God has always been to me.  He’s never demanded outrageous sacrifice of me.  He’s only been there, trying to lead me, when I would let him.  Religion, like Ayaan experience, is hideously ugly.  It is so tainted by all things human and wrong.  That’s why Jesus had to come to save us from ourselves.  He doesn’t demand, he leads.  He is everything we could never be on our own and he offers everything he has to us, freely.

 

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Family Vaca!

Gabe has been improving so much lately.  We’ve got so much to be grateful for.  But with the up and down nature of topical steroid withdrawal, we don’t take it for granted, because we know he could flare again.

(Yes, we dance in public!)

I’m just very, very thankful.

We have a family vacation planned for later this week and we are tentatively on track.  Up until today we have been debating having my husband stay home with Gabe.  But we really need a vacation.  Gabe really needs it.

And thankfully, he has been improving by leaps and bounds.

Friends, could you please pray that we would be able to all go and that God would keep Gabe healthy during the trip?  Please pray for Gabe to have a wonderful trip and forget about his condition for the period of time.  Thank you! 35645578_10160622787290074_285025338411450368_n

Motherhood on the Altar

Thank you to all of you who have followed Gabe’s story and progress.  We went through a very rough patch this spring.  It was very tough, not going to lie.  He had staph infections all over his body and his chest was basically an open wound for weeks on end.  The staph was so bad that even three different antibiotics didn’t touch it.

We’ve tried some new treatments and he is actually making huge improvements!  His chest is 90% healed up and the general infected areas are about 60% better.  We’ve been using this antimicrobial spray and it’s really helped a lot.  Gabe is getting back a higher quality of life.  There’s of course other treatments we are doing so it’s hard to know how much each thing is helping individually, but we are just happy he is getting better.

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Michael, Gabe and Shiloh

They are all out of school now so we are adjusting to that!  It’s tough for me because I’m big on peace and quiet and my kids are decidedly not. 

Before school ended we had Shiloh’s first big IEP (individualized education plan).  I had basically all year to sort through coming to terms with the fact that her issues went beyond “quirky” and that she would need special help in school.  “Autism presents itself differently in girls.  It can go undiagnosed because autistic girls are better able to blend in….” the school psychologist told me gently.

I had many night this past year to process all this as I was getting concerned calls from her teacher.  I spent many hours lying awake at night trying to figure out how to fix it, where went wrong, what had happened… really struggling to come to terms with it.  It was really hard but I had all those months to process it before hearing that the team that examined Shiloh had come to the conclusion that she needed extra help at school, a lot of extra help, and that she would receive it under the heading of autism spectrum disorder.

Her teacher from this year included this note on her final reports and she is absolutely right.  Whatever Shiloh is up against, we are her parents and we love her.  She may be incredibly naughty, mischievous and a hand full (to say the least) but she is also very sweet, joyful, caring.

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My Little Lamb

As a mother the temptation is always to blame yourself when your kid has issues or is struggling.  It’s really hard to take yourself off the hook.  To forgive yourself for mistakes you made.  To realize that it was never going to be a pain free ride because you were bringing children into a very imperfect and pain-riddled world.

Motherhood is something you need to put on the altar.  All you can do is your best.  You’re not in control.  You just have to trust that Jesus is in control, loves your kids like crazy, and has a plan.  A good plan.

Strength for the Caregiver

Last night was really tough.

My husband is gone on a work trip so I am left alone to manage Gabe’s night time wakings.  Last night he did not sleep a wink all night long.  I caught a few hours, interrupted, between him calling for me.  He finally passed out early this morning after moving to our recliner downstairs.

After my other two kids left for school I prayed and just wept.  Damn this horrible disease.  It’s not fair what it’s taken from him.  It’s not fair the heavy burden it is on our family.  Other people are out and about with their kids and I’m stuck at home trying to make what is not ok, ok and bearable.

It’s just tough and draining and exhausting in every way.

I’m sure other caregivers can relate.  So often your needs and wants are back-burnered (or even left to go cold all together) as the needs of your child or loved one take over.

He’s missed out on a lot.  It’s true.  But I know what also is true is that we have invested so much in this little guy.  Man, just the hours spent next to his bath, talking about everything.  Answering his thousands of questions.  

More often than not, the conversation naturally turns towards spiritual things.  We discuss Bible stories and theology, angels and demons.  He just has an insatiable appetite for knowledge.  His heart is so tender towards the things of God.  We often talk about what it’ll be like when Jesus comes back.

Would he be so spiritually hungry if he hadn’t had to go through all this suffering?  I don’t know.  But I do know that this trial has stretched me to grow.  I do know that on the other side of this thing we will be blown away by the goodness and faithfulness of our God.

I do know that God has entrusted me with this amazing little boy.  I do know that things are being worked out in heavenly places, things we don’t yet understand.  Our little tub side talks are building our faith and will become part of our testimony.

“And I am certain that God, who began the good work within you, will continue his work until it is finally finished on the day when Christ Jesus returns.” Philippians 1:6

and… 

“Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.” 2 Cor. 1:4

 

Miracles and the Mundane

Last night was rough.  Major struggle bus rough. b0ef15e95cf662961b5a62c3103b9ae2 I had to close at my store and then I came home to find I had been put smack dab middle into some serious family drama.  Then my daughter got sick and was up half the night emptying her stomach contents into blanket after blanket.  I finally dragged myself out of bed after giving up on more sleep at about 5 am after round five; stomach evacuation.

My husband had to stay home with our daughter, who was still feeling pretty crummy.  I brought my nephews and my son to church anyways.  It’s Palm Sunday!  I was going to church, come hell or highwater.  Everyone was tired from Shiloh’s late night cookie tossing and screaming in distress and the boys were fidgety and I felt disappointment sinking in.

I don’t get to see these boys enough and I was really hoping that the time would be a bit more idealistic.  But such is life.  Sometimes we need to let go of our unmet expectations to embrace the beauty unfolding before our eyes- in our imperfect reality.

Later in the day we went to visit my Dad for his 61st birthday.

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My Papa

My husband ran out to Caribou to get us some coffee (he’s a saint!).  He took forever but I didn’t really think much of it.

 

We had a great visit and as we were pulling away from their driveway my husband told me why he had been so long getting the coffee.

He had seen a homeless man standing outside.  Heart moved; he had brought the man coffee, food and some cash.  He took time to talk to the man and ask him his name, so that he could pray for him.

As he told me my eyes swelled with tears.  I love this man and I am blessed.  I am blessed to be a blessing.

Life isn’t perfect.  Some days you are tired.  Some nights you are up cleaning up puke when you’re exhausted.  But there is still so much beauty to be found when we look beyond our own circumstances.  When we realize how blessed we truly are.  When we are able to show the love of Jesus.

“But he was pierced for our transgressions, he was crushed for our iniquities; the punishment that brought us peace was on him, and by his wounds we are healed.” Isaiah 53:5

You are blessed.  You are loved.

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!!