Closing a Chapter

I haven’t posted an update on my son; Gabe’s, health in awhile. I’ve been working plus here in Minnesota we’ve had the snow-pocalypse with many, many snow days!
He has been doing really well. Awesome. He was diagnosed with eosinophilic esophagitis a couple months ago. He was feeling nauseous whenever he got hungry, tried to eat more than a few bites, just in general. We had an endoscopy and a lot of testing done (buh-bye tax return!). It’s basically an auto-immune, allergic reaction that occurs in the esophagus. Like he could be reacting to pet dander in the air and it affects his esophagus. Weird, right? My husband, his mom and his brother all have it, though.
We’ve been treating his skin with light therapy though and I believe it is improving his general health. By light therapy I mean tanning. It’s controversial though, so I like to refer to it as “light therapy” ūüėČ We bought special bulbs that have UVA, UVB and red light for a super healing therapy. We do a few minutes a day. His skin is almost entirely clear. It’s amazing, it really is. He is sleeping at the night and getting up all on his own in the morning. I never thought I’d see the day.
His E.O. (eosinophilic esophagitis) symptoms have gotten way better since we’ve started the light therapy. There’s currently some great theories about the light interacting with mitochondria and energizing at the cellular level- real interesting stuff. What I do know for sure is that tanning beds are a great way to maximize your vitamin D levels. Having high vitamin D naturally modulates the immune system. It calms inflammation and promotes healing. Image may contain: 2 people, people sitting and indoor

And the results on his worst area- his hands.¬† After just a month or so of light treatment. He’s doing wonderful, and I am so thankful. I was sharing all this on my steroid withdrawal group on facebook. Well, it’s not “my” group but was very active on there for two years so I was pretty involved. The responses were pretty mixed. That’s fine, whatever. You don’t have to agree with me. But another person was posting a lot about his wife’s success with tanning and…how to even put this…? A few people in the group lashed out at him with unbelievable vitriol. This guy was just trying to help. He wasn’t trying to sell anything. But the response was just so ugly. So disheartening. I ended up leaving the group that I had poured so much of my heart in for the past two years.

Maybe it was just time to go. After going through something so traumatic as we went through, seeing the photos people post in there (of raw, oozing skin) just brings back all those feelings. The dread, the fear, the desperation. I know a lot of people have to distance themselves after they have healed because of issues with P.T.S.D. I’d have rather left on good terms, though.
You just see this ugliness wherever you look. Especially online, when people feel especially emboldened to be nasty and hateful. It is getting increasingly hard to avoid the growing hostility in our culture.
“But mark this: There will be terrible times in the last days. People will be lovers of themselves, lovers of money, boastful, proud, abusive, disobedient to their parents, ungrateful, unholy, without love, unforgiving, slanderous, without self-control, brutal, not lovers of the good,treacherous, rash, conceited, lovers of pleasure rather than lovers of God–having a form of godliness but denying its power. Have nothing to do with such people.” 2 Timothy 3:1-5
You don’t have to go very far to see this playing out.
I think the last sentence should come as a huge relief to believers. We are supposed to shine our lights, yes. But we are not called to put up with abuse. We can and should remove ourselves from toxic situations and people.
Just within the past few weeks I realized I had stopped getting new podcasts from my favorite preacher- Pastor James Macdonald. There had been some kind of scandal that played out that brought an end to his radio broadcasts. I’ve been listening to him preach, and benefiting from his ministry, since 2007. I just didn’t believe it. I did a little digging and it sounded like some disgruntled former employees were just hell-bent on stirring up dissension. They didn’t like how things were done so they didn’t just leave- they are trying to destroy him and his ministry. It’s sad, it’s unjust. Please pray that he is vindicated and restored.
There is so much negativity and darkness permeating our world. You can not exist without wadding through the “mud” and being affected by it all. I just pray that Christ would strengthen our hearts to shine brighter. To be kinder. To overcome the darkness with good.

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Hope in the Darkness

I’ve been getting all sorts of nudges to write lately but life has been kind of nuts.¬† I am a full time school marm here.¬† It’s been kind of a disaster, honestly.¬† I desperately need to get my kid back in school so that I can stop pretending to be a teacher.

For those of you who don’t know; my son, Gabe, has been recovering from Topical Steroid Addiction for nearly the past two years.¬† There have been many ups and downs.¬† I’ve felt like I was in crisis mode more often than not.¬† I’ve had to be his advocate.

Everything I’ve gone through with him has changed me.¬† Just recently I have re-faced some things that used to rattle me.¬† I was decidedly “un-rattled” and feeling more capable.¬† More centered and less spastic.¬† I was struggling to put my finger on what changed, exactly.¬† I finally realized that is was mostly just maturity.¬† Good old fashioned growing up.

Today I drove my son to a specialist; a pediatric gastroenterologist.¬† My son has come a very long way with his skin.¬† He’s actually¬†looking¬†really great.¬† But he’s been feeling terrible.¬† Every time he tries to eat he feels nauseous.¬† I’m not sure why but I suspect it was caused by all the oral antibiotics and ibuprofen he needed a few months ago.¬† ūüė¶ 20181129_222002

I pulled all kinds of strings and jumped through hoops to get him into this man’s office.¬† The doctor listened to his symptoms and tried to diagnosis him with a condition that didn’t seem to fit at all.¬† The old me would have been extremely hesitant to speak up at that point.¬† The new me had zero qualms with telling him that I didn’t agree and I wanted testing to come to a definitive diagnosis.¬† The doctor agreed to do an endoscopy and test for everything under the sun.

Driving home, dealing with traffic, I was a bit emotional and hid my tear filled eyes from my son.  An old favorite song came on and the presence of God entered the car unexpectedly.

I’d be lying if I said that I didn’t at times feel like Gretel- wandering through a dark forest and looking, begging, hoping for any breadcrumbs that I could find to lead me out.¬† Sometimes we’re so much in the dark we can not see the purpose in it all.¬† There really isn’t any trite platitudes or self-help mantras that can help you when you are really hurting and lost.¬† When you’re looking for breadcrumbs and getting rocks and dirt.

This isn’t a pep talk message.¬† It just this- the hurting, the sorrow, the struggle is real.¬† It can’t be glossed over and I promise you-¬†it will not be overlooked.¬†¬†He feels our pain, He bottles our tears.¬† He loves us even though we can’t always see it or feel it.

“He was despised and rejected by men,
A Man of sorrows and acquainted with grief.
And we hid, as it were, our faces from Him;
He was despised, and we did not esteem Him.

Surely He has borne our griefs
And carried our sorrows;
Yet we esteemed Him stricken,
Smitten by God, and afflicted.
But He was wounded for our transgressions,
He was bruised for our iniquities;
The chastisement for our peace was upon Him,
And by His¬†stripes we are healed.” Isaiah 53:3-5

 

Deeper Healing

I haven’t written in forever because I’ve been so busy with back to school stuff.¬† I’ve also been very busy in my role as a caretaker for my son.¬† Ragweed season here booted up about a month ago and caused a very severe flare for Gabe.¬† His dad and I very reluctantly signed him up for an online school.

It was a really hard decision.¬† You don’t want your kid to miss out on interacting with peers.¬† It also felt like we were, in a way, waving a white flag in surrender to this horrible disease.

When we found out, back in February 2017, that the topical and oral steroids he had been using had actually caused their own illness; topical steroid addiction or red skin syndrome, we made it our mission to get Gabe better.¬† We’ve done everything we possibly can to help him.¬† We knew for sure he’d be better by last fall.¬† He wasn’t.¬† The months stretched on.¬† He would make major progress and everyone would get their hopes up, only to watch him go through another terrible flare. See the source image

This prayer rings so true for me.¬† An entire year after the time when we hoped he be well enough to go to school- there is a slowly gained acceptance.¬† We’re doing all we can but he isn’t better.¬† He still struggles.¬† He has good months and then really bad months.

This fall when he started to spiral down into another flare I was obviously disappointed.¬† I felt like we were just trudging through and he wasn’t any better than he had been, any further along in his healing, than he had been an entire year ago.¬† That would be 20 months of him being up half the night scratching himself bloody, carrying him to the bath every single morning, giving him all sorts of vitamins, therapies, treatments‚Ķ.¬† just to see him lose the progress we had gained.

I was sitting next to his tub a few days ago when my google photos from a year ago popped up on my phone.¬† I looked and there were pictures of him, exactly a year ago, sitting in the tub.¬† Wow.¬† I realized he did look so much better and still, has come so far.¬† A year ago he looked like a first responder to a nuclear disaster.¬† I’m not kidding.¬† He was more open wound than skin.¬† Areas that were healed are red and flaking again but I really believe his body is going through a deeper healing.¬†

The point is, we need reminders from time to time.  Reminders of how far we have come.  Because we get weary on the way.  We fall down.  The enemy loves to whisper to us that we or our circumstances will never change or get better.

It’s a lie and don’t believe it for a minute.

The God who led you into your wilderness is going to lead you back out.¬† You’re going to come out and when you do you will be wiser, stronger, humbled and with an unshakeable faith.¬† You will have a testimony.

“The desert and the parched land will be glad; the wilderness will rejoice and blossom. Like the crocus, it will burst into bloom; it will rejoice greatly and shout for joy. The glory of Lebanon will be given to it, the splendor of Carmel and Sharon; they will see the glory of the LORD, the splendor of our God.¬† Strengthen the feeble hands, steady the knees that give way; say to those with fearful hearts, ‚ÄúBe strong, do not fear; your God will come, he will come with vengeance; with divine retribution he will come to save you.‚ÄĚ Then will the eyes of the blind be opened and the ears of the deaf unstopped. Then will the lame leap like a deer, and the mute tongue shout for joy. Water will gush forth in the wilderness and streams in the desert. The burning sand will become a pool, the thirsty ground bubbling springs. In the haunts where jackals once lay, grass and reeds and papyrus will grow. And a highway will be there; it will be called the Way of Holiness; it will be for those who walk on that Way. The unclean will not journey on it; wicked fools will not go about on it. No lion will be there, nor any ravenous beast; they will not be found there. But only the redeemed will walk there, and those the LORD has rescued will return. They will enter Zion with singing; everlasting joy will crown their heads. Gladness and joy will overtake them, and sorrow and sighing will flee away.” Isaiah 35

See the source image

“Dear Heavenly Father, give us strength to be brave in the face of adversity.¬† Help us to hold onto hope.¬† Help us to refute and cast down every lie that the enemy tries to speak over our lives.¬† You may allow weeping for the night, but it never ends there.¬† Your sun always rises and with it comes joy for those who put their trust in you.¬† We believe, help us with our unbelief.¬† You are good and worthy of all of our praises.¬† Amen.”

 

The Provision of God

I’ve been wanting to write a post on God’s supernatural provision for awhile now.¬† One thing that has held me back is really the fear of coming across as “bragging” in any sort of way.¬† My hope in writing this that you see the goodness of God and the fatherly way he provides for his children.

I’ll set the scene some 12 years ago.¬† I was a young, single mom to my son.¬† I had really messed up my life.¬† I was a thief; shoplifting was a major hobby of mine.¬† I had gotten mixed up in the occult.¬† I was living life in a really dark place and I wasn’t a good person.¬† I was living with my parent who was very alcoholic and abusive.¬† It was not good for me and especially for my young son, Michael.

“The people walking in darkness have seen a great light; on those living in the land of deep darkness a light has dawned.” Isaiah 9:2¬†

To me that illustrates how truly we are saved by the goodness of God.  He loves us because he IS love and there is nothing we can do to make him love us more than he already does.

My little sister nagged me into going to church with her.¬† I did and get saved and filled with the Holy Spirit.¬† At that point, my life still didn’t look super great¬†but¬†I was overflowing with joy and the assurance that God was going to take care of me.¬† I gave really ridiculous amounts (for a single mom!) to my church and did so joyfully.¬† All with this knowing that God was going to take care of me.

Within a month I met Tim.  He was just everything that I needed.  He was/is just such a great guy.  I knew right away that God brought us together.  We were married within 2 months!  We moved into his little one bedroom apartment until we could get into a two bedroom.  My son, Michael, slept in the living room.  Image may contain: one or more people

A few months later Tim was offered a position he had applied for with a 20,000 a year raise.  Looking back, I know that it was God not just blessing us- but really blessing Tim for taking on the role of being the provider that my son and I needed.  He also took on the role of being a parent, 100%.

I really don’t believe in the so-called “prosperity gospel”.¬† We can’t use our faith to manipulate God into giving us what we want.¬† I do, however, believe that God can and will bless his children in many ways, including financially.

“If you, then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give good gifts to those who ask him!” Matthew 7:11¬†

We both wanted me to stay home with our kids.¬† God always provided for that.¬† As expenses went up, so did Tim’s income.¬† We tithed and gave to different charities that we believed in and God just kept blessing us financially.

Not only that, but Tim is able to work from home.¬† This has been a huge blessing as he was able to help me when we went through our son, Gabriel’s, extended and severe illness.

This past year I’ve been praying that God would bless us even more, and with that- help us to be more generous and able to give more.¬† We’ve been able to help out some family members.¬† God has also brought people into our lives through “coincidences”.¬† My husband, who knows a good deal about cars, has had all these encounters this summer (4-5 now) where he is able to help out women with car trouble, who were stranded.¬† We’re beginning to joke about it being his ministry.¬† Just this past weekend we were in WI and a single mom’s car had died.¬† My husband helped her to jump start it and showed her oldest son how to do it next time.

Another way we’ve been able to help has been in the form of a little neighbor girl.¬† I don’t want to speculate into her home life but I think she spends a lot of time alone.¬† She is at our house almost every day (that she isn’t staying with her other parent), all day.¬† I could be irritated but I chose to see it as a chance to pour some motherly love into her life.

I think a lot of being a good Christian is just loving the people that God puts in our path.¬† Generosity isn’t just about money.¬† It’s our time.¬† It’s our abilities (like Tim and cars or electronics).¬† It’s about having a joyful and grateful heart.¬† It’s about being a flow through account for the blessings of God.

After all those prayers, Tim did end up getting an unexpected bonus and a raise.¬† Again, please don’t hear that I’m bragging on anything other than the goodness and faithfulness of God.

I sit here with grateful tears in my eyes.¬† God has lead us through hard times for sure… but the overarching message of my life has been one of His goodness towards me.¬† His¬†unmerited¬†kindness.¬† Not just to me, but to my family. ¬†Image may contain: 5 people, including Sierra Rose, people smiling, people standing, tree, outdoor and nature

“Lord Jesus, thank you for your everlasting love that you lavish on your children.¬† You are good.¬† Your ways are so much higher than ours.¬† We love you so.¬† Help us to, more and more, model your heart to a world that needs it.¬† Increase our capacity for generosity in every way.¬† In Jesus name, Amen”¬†

I pray that if you don’t yet know your Heavenly Father that you would experience his love right now.¬† That you would surrender your heart and your life to this God who loves you perfectly.¬† He loves you no less than he loves me.

 

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.

Image may contain: 1 person, smiling, sitting, child and outdoor
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.

Image may contain: 3 people, including Sierra Rose and Aaron Terrell, people smiling, outdoor and closeup
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.

 

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.”¬†