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….  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, “Be strong, do not fear; your God will come, he will come with vengeance; with divine retribution he will come to save you.” 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

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“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.”

 

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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.

 

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

 

Signs of the Times

The World it is a ‘changin’.

Today I was browsing through the girls section at Target while I waited on a prescription.  I was pretty disappointed in the offerings.  The shirts were cute, bright, colorful but just about every single one of them carried thinly disguised political messages and worldliness not appropriate for children.

I’m not a prude.

But when I cam across this shirt, complete with “save the world” and a sexy cut-out over the chest area I was straight-up appalled.  31753187_10160441488800074_4613049361306222592_nThis shirt was a small in the girl’s section.  The size my daughter wears.  She is five years old, people.

What is the World coming to?

I’m not one to boycott but c’mon, Target.  This is blatant sexualizing of our young girls.  This is evil.

Just like the frog in the slowly heating water, there are forces seeking to desensitize us to the advancing forces of evil in our culture.

A few weeks ago I was in the waiting room at the dentist office when I flipped through a People magazine.  I haven’t looked through one in a few years.  And I was shook, as the kids are saying nowadays.  There were certain messages and agendas being pushed on every other page.  It isn’t a just a shallow celeb gossip magazine anymore, it’s a delivery system for propaganda.

The point of all this being; our culture is becoming increasingly hostile to the beliefs held by people of faith.  In the future, we will not be able to quietly walk the line.  We’re going to become increasingly counter cultural.  We’re going to have to take our stand with the Word as culture becomes increasingly antagonistic towards it’s ancient wisdom.

Children need to be protected.

Sexuality is not merely a vehicle for our own physical gratification.

We’re going to have to draw a line somewhere.  Whatever that means for us, however we feel led.  I’m still very much a “Jesus loves you” type of believer but I also know that there is a coming judgement.  I also believe that we are heading into a tailspin that will signal the end of days.  At least, for Earth as we know it.

We need to interpret the signs of the times, as Jesus said.

In Luke 21 Jesus talks about an increase in wars and natural disasters and the persecution believers will face-  “But before all this, they will seize you and persecute you. They will hand you over to synagogues and put you in prison, and you will be brought before kings and governors, and all on account of my name.  And so you will bear testimony to me.  But make up your mind not to worry beforehand how you will defend yourselves.  For I will give you words and wisdom that none of your adversaries will be able to resist or contradict.  You will be betrayed even by parents, brothers and sisters, relatives and friends, and they will put some of you to death.  Everyone will hate you because of me.  But not a hair of your head will perish.  Stand firm, and you will win life.”.. “There will be signs in the sun, moon and stars. On the earth, nations will be in anguish and perplexity at the roaring and tossing of the sea.  People will faint from terror, apprehensive of what is coming on the world, for the heavenly bodies will be shaken.  At that time they will see the Son of Man coming in a cloud with power and great glory.  When these things begin to take place, stand up and lift up your heads, because your redemption is drawing near.”Luke 21:12-19, 25-28

Does that fill anyone else with a sense of urgency?  I get goosebumps and I must admit that even as a little girl I had the sense that I would have to face these days.  Of course, Jesus said that no one would know the time or the hour.  However,  we can and should be wise and alert to the times.  Even if this doesn’t happen in our lifetimes it can’t hurt to live with a sense of expectancy and keep short accounts with our God.

“Dear Lord, help us to be lights shining ever brighter in this increasingly darkened culture.  Help us to kind and gracious but in no way compromising.  Grant us wisdom.  Give us your peace.  Thanks you that you won the victory and we have nothing to fear.  In Jesus name, Amen.” 

 

Spring, Hope

It was a really tough weekend.  A round of antibiotics had failed to heal up painful skin infections on my boy.  He wasn’t sleeping much because of the pain.

My husband and I have both been really weary.  Our anniversary passed (again) with a sick kid and heavy hearts.

We have both been grappling with our faith in this mess.  One thing though that I keep thinking about is the life of the Apostle Paul.  He went through so many crazy hard things, so many moments where he would have been justified in throwing in the towel and deciding maybe following Jesus wasn’t worth it.

“Five times I received from the Jews the forty lashes minus one.  Three times I was beaten with rods, once I was pelted with stones, three times I was shipwrecked, I spent a night and a day in the open sea,  I have been constantly on the move. I have been in danger from rivers, in danger from bandits, in danger from my fellow Jews, in danger from Gentiles; in danger in the city, in danger in the country, in danger at sea; and in danger from false believers.  I have labored and toiled and have often gone without sleep; I have known hunger and thirst and have often gone without food; I have been cold and naked.” 2 Cor. 11:24-27

How has our Americanized, comfort-centered thinking colored our view of Christianity?  We think (if we’re willing to admit it) that if we are good people, pray, go to church, etc. that we should get some kind of a blessed (charmed) life.  When that doesn’t work out we are bewildered and our flimsy faith teeters.

But what if God isn’t after our comfort but in refining our faith?  What if he doesn’t want content pew-fillers but believers on fire for eternity?  Believers who realize that our time here on Earth is about so much more than seeking our own temporal happiness?

The prayer of my heart is, “Lord help me to learn the lessons you have for me here, in this tough place.  Do a work in me that can’t be accomplished any other way.  Our baby boy belongs to you and we know you hold him and his future in your hands.  Whom else have we in Heaven but you?  You alone have the words that bring eternal life.  Therefore, we will put our trust in you.”  

Spring finally came to Minnesota.  A praise-a-lullah!  Yesterday I took my kids to a (yet) deserted beach and had my son reveal his wounded flesh to the intense UV rays.  He actually slept last night and looks much better today.  20180423_153150We’re hopefully going to go back for more old school, helio-therapy.  healing power of sunlight

A verse I am praying is “He sent out his word and healed them..” Psalm 107:20  I am thanking God that he is sending out His word to heal Gabe.  We want to thank him in advance.  😉  In the mean time we do everything we can in the natural, while God works things out in the supernatural.

“I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.” John 16:33

We believe in miracles but sometimes God has something better in store than that instant miracle.  He sees the big picture.  He is GOOD.  He wants our trust.  It matters how we respond to the trials he allows.  It matters for eternity.

Crown of Life

I’ve been in that familiar place again, battling discouragement.

My son has been battling for so long.  First eczema.  Then topical steroid withdrawal.  Now residual skin infections and rashes that don’t seem to budge for nothing.

God only knows the pain we’ve experienced.  I say “we” because there is no pain like watching your baby suffer.  God only knows the tears.  The cries.  The sheer wretchedness.

The battle rages on.

I was reminded recently that sometimes there aren’t any words.  Or at least, words that should be spoken.  I was talking to a family member about trying to find God’s purpose in suffering and was barely even able to speak my piece before being barraged with a tidal wave of insensitive, unwanted advice.  When someone has been through a trial like that, really- they just want to be heard.  I know it is in our human nature to try to give a quick answer (when there isn’t one) and sometimes trite words of wisdom do far more harm than good.  I’ve had to wrestle through anger and just sheer weariness.  So please, if you know someone going through a tough trial; just be there for them.  Don’t pretend like you know what they are going through or dish out advice.  Just listen.

“Rejoice with those who rejoice, weep with those who weep.” Romans 12:15

I try to be gracious because, really, sometimes we just have no idea.  I know I can look back on some things I said and did that were horribly insensitive, just because I simply didn’t know.  Walking through heartache, especially an extended season where there’s no end in sight, has a way of bringing humility that can’t be gained any other way.

What God has been speaking to me lately has been about the crown of victory.

“I am coming soon. Hold on to what you have, so that no one will take your crown.” Revelation 3:11

If you are a believer, you have an incredible inheritance.  You are already seated in Heavenly places.  You have a crown and you are royalty.  God wants you to become an overcomer.  If we didn’t have battles to fight, Goliaths to overcome- our stories wouldn’t be very interesting, would they?  We have a crown on our heads but a sword in our hands.  There are battles to be fought, giants to be defeated. 93cc36ecef5a2ed8211337bd08e96c82

Keep your chin up.  Keep fighting.

“You keep track of all my sorrows. You have collected all my tears in your bottle. You have recorded each one in your book….Therefore we do not lose heart. Though our outer self is wasting away, yet our inner self is being renewed day by day. For our light and temporary affliction is producing for us an eternal glory that far outweighs our troubles.”  Psalm 56:8, 2 Cor. 4:17