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.

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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

Gluten and Eczema

Awhile back I started my three kids on a gluten free diet.  For two main reasons- my 23 and Me test showed that my celiac disease is definitely genetic.  Plus, two of my kids struggle with A.D.D. issues and the other has horrible eczema/TSW.  There is a very strong link between gluten sensitivity and both conditions.

There was a lot of complaining for sure!  Especially my eldest, who said he’d rather deal with potential effects of eating gluten than cut out his favorite foods.  He’s slowly coming around.  He’s big on science and I took time to explain how gluten causes inflammation in virtually everyone, but that some people are genetically more susceptible.  Because celiac runs in our family, that would definitely include him.  Plus the gluten free offerings have gotten so much better and varied in the last few years.  When I first went gluten free the gluten free pasta was disgusting.  Now there are brands so good you can hardly tell or miss the gluten!

I definitely got part of my answer when I let my kids “cheat” about 10 days ago.  My middle son, Gabe, had a huge piece of pizza and some regular cookies.  The next day almost his entire body was covered in a rash that lasted for four days.

I’ve noticed my oldest is much more calmer and focused.  Now if I could just find a way to treat surly-teenager-itis!!

I think my youngest is having less meltdowns.  I say I “think” because it’s really hard to measure objectively.  I did notice on Easter, after eating way more sugar than usual, she was crying and emotional all night long.  *sigh*  What you feed your kids really does have a huge impact on emotional and mental (as well as physical, of course) well-being.

Another thing I realized is that when I switched my son’s laundry detergent it lead to a huge backslide in his healing.  I didn’t even think much of it at the time.  He was getting so much better so when his natural powdered detergent ran out, I just ran out and got some standard free and clear detergent.  He’s been getting worse ever since.  I bought some more of his old detergent and washed all his clothes and bedding.  Hopefully that will help! MSGR_PHOTO_FOR_UPLOAD_1522792350087.jpg_1522792352001

When you’re battling eczema it’s almost always a sign that your immune system is malfunctioning.  It’s not uncommon for you to have random allergic reactions.  A couple days ago I had taken Gabe and his friend to a movie.  We were all having a lot of fun but she playfully rubbed a stuffed bear toy she had gotten from a claw machine on his face.  On the way home his eyes started swelling up.  They turned bright red and rash-ey.  Much Benadryl and a bath later and he was still miserable.  The bear was probably “cheap, china junk” and covered in flame retardants, dust, and formaldehyde.

With eczema it’s not just a skin disorder.  It’s internal before it is ever external.  It’s so important to look after your gut health and avoid inflammatory foods that would make leaky gut worse.  Vitamin D is probably the best single thing to treat eczema and any auto-immune condition.  We take a form that also has vitamin K2 to improve absorbability.  We also use Now brand vitamin D cream on Gabe.  It doesn’t irritate his skin and it helps keeps his levels up.

Fish is also great too.  Because our guy is so little he reacts quickly to food and treatments.  For instance, yesterday he was “crashing” (getting itchy all over and tired) when I gave him some fish oil and he ate some baked tilapia.  He perked right up and had a few more good hours in the day (as opposed to spending the rest of the day immobile).  Our western diets are way too high in inflammatory omega 6 fatty acids.  Think cheap vegetables oils.  We need some omega 6, but it needs to be balanced with omega 3s to keep our inflammatory responses healthy and appropriate.  The standard American diet has 16 times more omega 6’s than omega 3’s.  Omega 6 and Inflammation

To combat his you should throw out all your vegetable oils.  Corn, soy, peanut, canola, rapeseed….it’s all terrible.  Cook with butter, coconut oil, and at low temps with olive oil.  Try to eat fish at least once a week- especially wild-caught salmon, which is great because it is very high in inflammation-crushing omega 3s and it gets it’s pink color from astaxanthin- a potent antioxidant.

Of course fruits and veggies are so important too.  We try to buy organic in bulk, at least for the most heavily sprayed produce.

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to the veggies!

 

Just making these changes, and taking our son off of all steroids, eliminated his asthma/chronic pneumonia.  He still has a way to go but we aren’t going to quit until he is 100% healed!

 

 

A Year

The one year anniversary of my son starting topical steroid withdrawal passed pretty quietly ten days ago.  I wanted to write a triumphant blog commemorating the occasion but I didn’t have it in me.

Some of the memories and feelings are still raw.  Today I unfollowed my ITSAN support group.  The daily barrage of suffering is too much.  Our experience has gotten considerably better but the memories of the months of unmitigated suffering are still fresh and the daily reminders aren’t something I want to deal with.

Life is moving on.  Gabe is back in school and mostly functioning like a “normal” kid.  He is currently in the process of testing for the districts highly gifted program.  I could stress out about how little sleep he got last night and how it will affect his testing today, but I know it’s in God’s very capable hands.

One thing I pray is that God would give Gabe a double recompense of blessing for the horrible trials he’s had to endure.  I pray that Gabe would grow up in the presence of God and fulfill everything God created him to be and do.

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My Sweet Boy

The awesome thing about serving God is that HE can take the horrible things you have to go through and turn it around and make it work out not only for your good but for the good of everyone watching your story unfold.

“He brought me up out of the pit of destruction, out of the miry clay, And He set my feet upon a rock…Many will see and fear the LORD and put their trust in him.”  Psalm 40:2-3 

The Devil does his damndest to destroy us and thwart the plan of God for our lives.  But God uses those things and it’s those things that actually prepare us to step into our calling.  Devil be damned.

“You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives.” Genesis 50:20 

Through all of this I have been boldly bringing my prayers and requests before the throne of grace.  But one verse I have been meditating on lately is this stark warning from Psalm 106- “And he gave them their request; but sent leanness into their soul.”

It’s ok to ask.  We all want breakthroughs.  I want my baby healed.  I want to be a published author.  I want certain loved ones filled with the Holy Spirit.  But I don’t want those things at the expense of my spiritual hunger for God.  Sometimes we demand to get our way, and do get it.  But the end result is a leanness in our soul.  How terrible.

“Lord, help us to always seek your face and not just your hand.  Help us to be ever aware that there is nothing that compares to the riches of knowing and being known by you.  Help us to pursue you more than we pursue anything else, even the good things and hopes you have placed in our hearts.  We love you and trust your plan, even when it includes suffering. Amen” 

 

Change

If you’ve read my blog over this past year you’ll know my son, Gabriel, went through a really awful withdrawal from topical steroids.  It was so bed he was basically on bedrest for months.  Basically he had gotten addicted to very strong steroids and it made “eczema” spread all over his body and affected his entire system.  I really don’t want to post pictures but google “topical steroid withdrawal” and you’ll get this gist of how horrific and debilitating this condition is.

But now 11 months in and he is so much better.  

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My Little Goof

He’s not 100% yet but he’s come leaps and bounds from where he was.  So much so that we got a call from his school principal saying “Gabe’s looking great!  So… we really want him back in full school days.”  I told her it’d be a rough adjustment but we’d try.

Yesterday morning when I woke him up early it was so tough.  Because his adrenal glands were so messed up from the steroid usage, he has struggled horribly with insomnia.  We’ve (up till now) let him sleep in because he sleeps so poorly at night and for whatever reason slept better during morning hours.

But he has been making major strides so my husband and I agreed it might actually be helpful to try to force his body back into a more regular sleep schedule.  The first morning was rough but he actually did sleep a lot better last night and woke up much easier this morning.

It’s a huge step for him and milestone.  He still has a ways to go before he is 100% healed but we are so thankful for the progress he has made. 11825

A lot of times in life the path to healing is bumpy and hard.  There are times we need to push out of our comfort zones to reach the next level.  Change is hard but often necessary.

As Gabe’s loving parents there have been times where we comforted him and carried him (ha literally) but on this journey we’ve increasingly pushed him out of his comfort zone.  As he’s gotten better we’ve adjusted his treatment accordingly.  As he grew wings we’ve metaphorically pushed him out of the nest.  Times where we knew he was capable but it was his mind that was stuck.

How many of us are perfectly capable of making necessary changes but are still stuck in old patterns?  We were too sick at one point but we’re stronger now but still being held back purely in our minds? 

“Dear Jesus, you know our hurts, our pasts, our fears.  I pray that for all of us that you’d help us to break free from restrictive and sickly thought patterns.  Help us to embrace wholeness in every area.  Help us to find our wings and courage and fresh hope and get out of our comfort zones.  For your glory.  Amen.” 

Rest

I’m sitting here munching away on dark chocolate and it’s not yet 9am.  I just drank two cups of coffee plus a generous amount of cold brew.

Why?  Because I’m exhausted.

My husband has been gone on a business trip all week so I’ve been holding down the fort solo.  Which was going pretty well until last night.  Gabe had too much sugar (can’t blame him, a neighbor very thoughtfully brought over Christmas goodies) and was up just about all night long scratching.

I think he finally fell asleep but at 3 am my daughters bed-wetting alarm went off.  So I’m stumbling around in the dark trying to unhook this contraption from her soggy undies while it’s chirping loudly enough to wake the dead.  Gabe is awakened from his slumber and possibly the neighbors as well!

I finally just had to give him a dose of Benadryl so he could stop itching long enough to get back to sleep

I lay there for an hour afterwards and couldn’t fall back asleep until seemingly right before my alarm went off at 6:30.

So that’s why I’m drowning my tired sorrows in some lindt and starbucks.

I just realized all of this is very ironic because I’ve been meaning to write a follow up blog about rest.  My last blog was all about pushing through.  Grit and determination are important but no less important than finding rest.

In my TSW online support groups there is a lot of talk about PTSD, both for the kids who go through this nightmare and the parents who very much suffer along with their children.  I think we’ve been able to avoid it because we have really done everything we can to be there for Gabe, emotionally and physically.  If he was happy, we were happy.  When he cried, many times I held him and secretly cried too.  I’m a big believer in processing your emotions at the time.  Shoving them down leads to so many problems later.

But one lingering fear that still very much affects him is that he is afraid to sit and relax.  See, for months he would get brief energy bursts (where he could walk and function) and we’d be able to get out for an hour or two before he’d “crash” and it’d be back to sitting in the recliner for the rest of the day.  Because his adrenal glands were so shot from the long term steroid usage; sitting down would often mean he just couldn’t get back up again.  Which is terrible for anyone, but much more so when your a formerly very active 8 year old boy.

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He spent many hours here

Now he’s made tons of progress.  His skin looks so much better and he has loads more energy.  He can usually “go” from 9 am to 9 pm now.  A huge improvement where even an hour of being able to get up and walk around was a happy occasion.

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So he’s come so far but I think the fear of “crashing” is always with him and he is afraid to sit down.  Afraid that his energy will desert him if he takes a moment to rest.

I noticed this about a month ago.  I initially thought he always stood because maybe the dryness in his legs made it uncomfortable to bend into a sitting position.  But then I realized that wasn’t it.  He was afraid.  He would push himself all day and not sit at all except when in the car or on the bus.  It just couldn’t be good for him, especially since he is still recovering.

So in the evenings I started forcing him to come and sit with me.  He would resist it at first but pretty quickly he would curl his body close against mine and I would feel his tension melting away.  A deep sigh and a sense of peace would come over him.  What he was resisting was what he most needed.  He fought so hard all day to overcome but he also needed to embrace times of rest after all that valiant effort.

I think that’s all of us.

We think rest is zoning out or maybe shopping or eating or whatever.  And those things can be good and much needed but we need a deeper rest.

“Come to me, all you who are weary and burdened, and I will give you rest.  Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls.  For my yoke is easy and my burden is light.” Matthew 11:28-29

When we’re stressed, hurting, tired…. we don’t need to numb ourselves we need to seek this genuine rest.  I know it’s something I need, every day.  Not to check my Facebook for the 56th time.  Not to overdo it on the wine.  But to find this place of true rest that will restore my soul.

We need this time of rest built in to our lives because we live in a pretty harsh world.  Our default mode is to seek bandaids and self-medicate when we really need to get our bruised souls in the healing presence of God.

This is really a challenge to me but hopefully an encouragement to others to seek His rest throughout the day.  He isn’t going to force us (he isn’t a pushy, bossy mom like me) to lay down next to those still waters, but the invitation is there. 790ff8ab4f67275d6ed6d2cd987f1335

“Lord, you know our burdens and our heavy cares.  Heavenly father we pray that we would surrender and relax into your rest.  Help us to have a childlike faith and open our eyes to the wonder of your intimate care for us.  Thank you for loving us so, even when we resist and struggle against what we need the most. Amen”