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

Educated Beyond Obedience

I’ll be completely honest, I’ve barely read my Bible lately.  We went through a time when Gabe was waking up all night long and I wasn’t about to get up early to get that time in.  I’ve just totally fallen out of it.  And now our schedule is shredded like confetti and tossed into the sky, now that school is out.

I’ve been leaning really heavily on podcast (don’t you love them?!) for spiritual nourishment.  The past couple days I’ve listened to some sermons by Francis Chan.  Now, if you want to get real uncomfortable and challenged- this is the guy for you.  I’ve even had moments of wondering if I should even listen.  Seriously.

“The servant who knows the master’s will and does not get ready or does not do what the master wants will be beaten with many blows.  But the one who does not know and does things deserving punishment will be beaten with few blows. From everyone who has been given much, much will be demanded; and from the one who has been entrusted with much, much more will be asked…..” Luke 12:47-48

Strong, strong words from scripture.  This was a parable so I don’t think it literally means we are going to physically beaten at judgement.  I think it’s an illustration that knowing God’s will does not put us at any advantage if we aren’t willing to act on it.  In fact, if we “know better” but ignore what we know- we will be all the more culpable.

“Do not merely listen to the word, and so deceive yourselves. Do what it says.” James 1:22

It’s such a frightening thought to me.  I realized, listening to the sermon- that I am so completely selfish.  So driven to get my own needs met.  I am so prone to deceive myself.  I realize how easily it is to slip out of God’s will and not even realize it.  We are masters at deceiving ourselves.  We give God lip service.  We crack open his Word here and there.  Maybe we even have a fish decal on our car.  All of this matters so very little.  

“God, I know I am so very prone to self-deception and selfishness.  Please shine your light into my heart so I can see the truth of where I’m at.  And thank you that you love me anyways.  Lord, I pray that you would help me to truly live for you.  That my heart would beat for you.  That I would really care about the lost.  That I would live for eternal things.  I know that the things I think will make me happy, won’t and can’t.  Only in you is true joy and peace found.  In Jesus name, Amen.” 

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

 

The Greatest Thing

As I was vacuuming this morning I felt like the Holy Spirit brought a powerful but simple message to my heart.  Yes, my spiritual time may or not be while I am vacuuming.  I have a super fluffy golden retriever and now we added a kitty to the mix, so the vacuum and I are currently best friends. 20180603_083443

But anyhoos, the thought that kept coming back to me is this- The absolute greatest gift we can bring to the World is to let Jesus shine out through us.

I know we’re fond of saying #blankiseverything.  You know; a day at the beach, a new song, even a favorite nail polish.  But truly Jesus is everything.  The Universe shouts his praise.  The stars proclaim his glory.  Jesus is the only one worthy of our praise, our adulation, our very lives.  So powerful and mighty but so close.

I am awed and so blown away that he wants to show up in this planet through me.  I am saved to the max but still here to become, from glory to glory, more like him.  Every day is a day to know him more, to be transformed in his presence, and then bring that presence to a hurting world.

“And we all, who with unveiled faces contemplate the Lord’s glory, are being transformed into his image with ever-increasing glory, which comes from the Lord, who is the Spirit.”  2 Cor. 3:18

“Oh Jesus, how I love you.  My prayer for myself and those reading is that we would be swept up into your amazing presence.  That we would know that we are never alone.  You are the friend that sticks closer than a brother.  You are the Alpha and the Omega, Beginning and the End.  The exalted one.  Perfect.  You are love.  Please help us to yield to you our lives, our hearts, our everything….because YOU are everything.  We pray that you would shine through us so that the World would truly see you in us.  Thank you for this awesome privilege, to be your living Temple.  We love you, Jesus.  Amen” 

Grace for the Inexcusable

I know I’m way late in the game here in posting my thoughts on the Roseanne Barr twitter diaster, but I guess I’ve been mulling on it.  Of course my initial reaction was to cringe at what she said.  It really was terrible.  Inexcusable.

But it wasn’t long until my heart just felt sad for Roseanne.  Not Roseanne the celebrity, or Roseanne the icon, or even Roseanne the public personality.  But who she really is.  A human being with vulnerabilities and flaws just like the rest of us.  I can’t even imagine what it feels like to have the entire World watch you royally screw up and become the object of public scorn.

I’d imagine her regret over the incident was probably very genuine.

Whether it really was just an ambien-fueled, regrettable, but unintentional post or whether she really did mean it in some insidious way- how do we, as christians, respond?

I’m fairly in touch with my own sin and shortcomings.  Lest I forget, my ugly nature rears it’s ugly head again.  I know I need a savior.  I know the muddled mess I am apart from Him.  I know the same sin nature that fuels racism simmers at times in my own heart.  She needs grace.  I need grace.  We all do.

We can’t just join the clammering crowd, stones in hand, screaming for justice- when we are just as guilty.

One incidence from scripture that jumps out at me is the story of the woman caught in adultery.  She had done the inexcusable and the penalty was death.

Then Jesus straightened up and asked her, “Woman, where are your accusers? Has no one condemned you?” “No one, sir,” she said. “Then neither do I condemn you,”Jesus declared. “Go now and leave your life of sin.” John 8:11 

My thoughts on the scenario is that we have to be so careful not to become pharisaical in our own righteousness.  We need to remember what we were saved from.  We need to live with a sense of humility.  We need to intercede instead of throwing harsh judgement.  Jesus didn’t just die to save us from little sins.  He died to cover the worst of humanity with his precious, atoning blood.

Sinfulness is our natural condition, people.  It’s only by grace that we are lifted out of our slimy pits and set on the high ground.  How then, can we, look down on others?  Your sin may not look my sin but it’s all sin.  It’s like a cancer eating away at our soul and every single member of our human race is infected and it’s terminal.  We don’t scream at them about their cancer.  We humbly hold out the cure.  Image result for hand extended