The Empty Tomb

Yesterday was a real let down for me.

See, it’s been raining here for dayyysss.  Our back yard is a soggy marsh!  But yesterday was beautiful.  Sunny and 65 degrees.  I was really hopeful that we’d be able to get out and hike and have fun as a family.

But Gabe went downhill really quick.  By the time we got to the park he was already frantically itching.  He shredded up his legs and feet.  We had to go home where I spent the rest of the day caring for him.

As much as I love him I have to admit that being a caregiver to a very ill child is incredibly draining.  It hasn’t just been weeks, or months, but years of this.

But what also happened is that we had a really rich spiritual conversation.  Gabe’s suffering has made him very sensitive to the things of God.  That and all this time I’ve spent with him has made our bond so close.  ggcici

Sometimes I just stop and thank God for giving me such a great kid.

I think about how when he was so little, the times his father and I knelt down next to his little toddler bed and prayed over him while he slept.  We dedicated our child to God and asked that he would use his life in powerful ways.

I was praying a few weeks ago and feeling very discouraged and hopeless even, but God reminded me of those prayers.  He told me, “Just keep dedicating him to me, every day.”

I woke up this morning and prayed and petitioned God with tears. for his healing.

I got this image in return of the sun rising over the empty tomb.

It’s our faith, it’s our life.  The empty tomb is the hope of humanity.

By his stripes we are healed. 20171008_074619

Suffering and pain may come knocking at our door.  They may even stick around far longer than we’d hope.  But the empty tomb gets the final say.  Weeping may last for the night, but JOY comes with the morning.

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Where I’m At

I haven’t written in awhile.  Amidst the end-of-summer craziness and back to school hubbub, I just haven’t really had anything worth writing about or the time to write it.

But, miracle of miracles; my kids are all in school.  At this moment it’s just me, my dog, and a coconut mocha.

It’s a true miracle that Gabe is in school.  Yesterday he felt good enough that we decided it was the day.  His backpack had been packed weeks earlier.  He was scared but I coached him on what to say if anyone asked what was wrong with his skin.  I said if he started crashing at school to tell his teacher and I would come pick him up immediately.  gg

I dropped him off and got tears in my eyes.  He hasn’t been able to go to school since last February.  He’s come so far and there were days we felt like we would never get here.

He had a good day and was optimistic going back again today.

I had posted about it on facebook when a facebook friend commented, “GIVE GOD THE PRAISE!!!”.

I know she meant well but I felt an unexpected pang of irritation and anger.

A couple weeks ago I had been worshipping in my car and God had revealed to me the nature of the thing I’ve been battling for months, or even longer…

My trust in his goodness towards me has been seriously wounded and it was shaky to begin with.

There’s been so many hard things, so many painful things…and then this?  Even coming out (hopefully) on the other side of the worst of it…my soul has been so traumatized by witnessing suffering that no parent should have to see.

Sobs in the night.  Wounds that won’t heal  A true sense of hopelessness.

I know God is there, has been there.  But, it’s complicated.  I’m hesitant to speak to anyone about my feelings because I just can’t handle getting chastised or beaten over the head with platitudes.

I know what’s blocking my growth is my lack of submission to God.  But how can you submit when you can’t trust?

I’m still working things out.  I still believe.  I still listen.

This is just where I’m at and I have to give myself permission to be ok with that.

Mini-Me Emo

Have you ever thought to yourself, “I wish I had a mini-me!”?  lol  Me neither. 15977912_10158152160410074_5460029857167451154_n But it happened.  My son Gabe is so much like me.  He looks like me and basically has my personality down to his music taste.  True story; as a child my favorite song was “Take on Me” by A-ha.  Which is now his favorite song.  It’s so odd sometimes just how much gets passed down from one generation to the next.

I’m a sensitive introvert (an INFJ, to be exact) and I’m guessing he is too.  I swing between two extremes in personality- everything is wonderful and I love everyone…or woe is me!  Nobody loves me!  Life is horrible!

Basically wildly vacillating between these two extremes…

PinkiePieHiRes tickle-me-emo

I see so much of that in my son as well.  Finding out my personality type was extremely helpful in understanding why I think and act the way I do.

I know I write in a very serious manner but that is just part of my personality.  In my life I am really very goofy and silly and weird.  I love to laugh and would do just about anything to elicit a laugh.  But I also have this very serious, reflective side.  Lately, that part has been very much in the forefront in going through an extended health crisis with my son.

Under stress I’ve just not been in the best “head space”.  I think a part of me was upset when everyone else’s life just kept going like normal when mine came to a screeching halt.

INFJs are known for “door-slamming” when under pressure and I can look back and see I have done that multiple times in the past few months.  A door slam is when we reach a point of stress and frustration that is such that we completely cut people out of our lives.

Today I took a major step forward in repairing one such damaged relationship.  It felt really good.  I realized (ouch ouch ouch) that I can be a bit of (!!!) a drama queen at times.  I have compassion on myself though because I’ve been given this weird insight into how I am wired, because I see so much of it in my son as well.

I’m emotional.  I get hurt easy.  I tend to turn inwards instead of just outright addressing problems.  But I’m also caring and thoughtful and quick to forgive when I eventually do come to my senses.

Having children is humbling but also enlightening.  I know, for me, it has helped me to be more compassionate with myself.  I love my children so dearly but I see the humanness there.  Their weaknesses.  Their struggles.  But I love them so much, they are so precious to me.  I love them for who they are, not in spite of their humanity but because of it.  They are vulnerable and they need me and that only makes me love them more.

I think God sees us very much the same.  He loves us in our humanity, in our struggle.  He has a Father’s heart towards us.  It gives me a tremendous sense of comfort to think of God in that way.

“Can a mother forget the baby at her breast and have no compassion on the child she has borne? Though she may forget, I will not forget you!” Isaiah 49:15

I think that is a word for someone.  I will not forget you! 

“Heavenly Father, help us to get a sense of how much, how dearly, you love us.  Help us to know and truly understand that you will not, can not, forget us.  You fashioned us uniquely in our Mothers womb.  You know us intimately and love us eternally.  Amen”

A Midsummers Night Blog

This is just going to be kind of a random blog about Gabe’s progress and life in general.

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Lindt chocolate ball,  mmm

Gabe is now 5 months into topical steroid withdrawal.  I know I left off with sharing what rough shape he was in a couple weeks ago (with what may or may not have been measles…) without any real update.  He did get better.  Now he is back to his usual TSW self.

His skin looks much better than in the early days (or even two weeks ago with mystery illness!) but his energy levels are still very low.  I imagine long term topical steroid use caused major adrenal gland suppression and it is just taking a long time for them to “re-boot”.

At this point he is still sitting in his favorite spot, the recliner, for most of the day.  He doesn’t want to go anywhere.  I can’t blame him.  Minnesota summers are hot and very humid and it aggravates his condition horribly.  Just 5-10 minutes outside will lead to a 20 minutes “itchfest” where he’ll scratch till he is bleeding and in pain.

One of the hardest things is feeling guilty because so much of my time goes to taking care of Gabe.  My other two children just aren’t getting as much attention.  We could have picked a better time to start!  I feel like we are all missing out on summer fun, seeing as how we spend most of our time indoors.

I know next summer will be different, will be better.

In the mean time I can’t wait for school to start.  I know moms aren’t supposed to say that, but it’s true.  I am truly an introvert, and I need a good deal of peace and quiet every day for a sense of emotional well-being.  Being mostly stuck inside all day with three loud children is very draining!  That plus the fact that many nights Gabe is literally up till midnight and then up again at 7 am, needing care.

As someone who is naturally prone to depression, I feel like I have been handling this all really well.  My husband is my support system for sure.  Plus my sweet dog (the subject of my last blog post) he is always there with his comforting presence.  And of course, God (!!!).

There has been quite a lot of pain along the way.  In that this condition is very alienating and I haven’t gotten as much support from other people in my life as I would hope for.  I have felt judgement (real or imagined) at our decision to take Gabe off of his potent steroid creams.

I know that ultimately it really doesn’t matter what anyone else thinks.  My husband and I are 100% on the same page.  We feel like God led us to this point.  I know that Gabe will heal and that will be vindication in itself, along with being our greatest hope realized.

In closing I think that so often we feel like if God is with us, the journey would be easier.  We feel like if we are hurting and exhausted, God can’t possibly be involved.  But that just isn’t the case.  Just like how he met with the Patriarchs in the desert, he meets with us in our “desert”.

“I will make rivers flow on barren heights, and springs within the valleys. I will turn the desert into pools of water, and the parched ground into springs.” Isaiah 41:81

“Lord, help us to find your streams of life-giving waters in whatever barren wilderness we find ourselves in.  Help us to rise above our circumstances as we keep our eyes on you.  Do a work in our hearts as we submit the brokenness of our situations to you.  Help us to know that you are the prize we seek and that we have eternal value as your workmanship in Christ Jesus.  Amen”

 

 

 

 

 

 

Huge Setback

Warning: this blog contains graphic medical photos….

Gabe was doing pretty good.  The liviaone probiotic spray was really helping to clear up his skin.  He was still very much still going through TSW (topical steroid withdrawal) but still able to get out and enjoy life in a limited capacity. 20170630_133401

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This is his feet, looking AMAZING compared to how they had looked just a week or so prior.

 

Then last Monday he started not feeling well.  Very tired, very irritable.  By Tuesday he was getting a bumpy rash and was feverish.  We assumed it was a staph infection.  When it didn’t respond to our treatment at home, my husband took him in to the emergency room.  We got a quick staph diagnosis and antibiotics and went home. 20170704_194659

He was way too sick to go anywhere for fireworks on Tuesday.

Sometime mid Wednesday we realized that he wasn’t responding to the antibiotics.  The rash of little red bumps had spread all over his body.

My Mom came over and suggested it might by measles, which I quickly dismissed.  Later I realized I knew very little about measles so I do some quick googling.  I realized that Gabe’s rash looked very similar to the typical measles rash.

20170705_114604He also had the other symptoms of headache, sore throat and tongue, fever, etc…

We brought him in to urgent care Wednesday night. The took swabs and samples and said we would know by Friday if it were measles or not.

By Friday, Gabe was still in rough shape.  The measles plus his underlying TSW made for a hellish week for everyone.  Gabe’s skin was literally peeling off.  A thick layer of dead skin would come right off to reveal still-too raw red skin underneath.  You can see this on his feet…

20170707_204127

This obviously involved a lot of pain for him- on top of the other symptoms of measles and his TSW flaring.

Yesterday I brought him in to see a pediatricion to get him something stronger for his pain.  Ibuprofen wasn’t cutting it.  When I got to the clinic the ladies at the front desk all made knowing eye with contact with each other and backed away from the desk.  Great, Gabe is the “measles kid” and everyone at the clinic has been talking about it.  He had a mask on and they were well over 15 feet away but the reacted as though I had just rolled up with a zombie-leper in that little child sized wheelchair.

We got Gabe some tramadol and vitamin A.  But at this point we still don’t have answers.  None of the four doctors who have seen him this week have ever seen measles before.  The state health department has taken over his samples and testing so that is delaying getting our answers until Monday or even Tuesday.

How did Gabe get the measles?  We don’t know for sure yet (we don’t even know 100% if it IS measles…) but just a few days prior to all this I had read about documented cases of people getting sick after coming in contact with someone who had recently been vaccinated with a live virus.  Gabe had been around a young child who just got her MMR shot in the days leading up to his illness.  It’s very possible that the child was shedding the measles virus and Gabe was susceptible due to his weakened state.

The Doctor told me that they will be able to tell if his strain of measles is wild or cultivated.  Basically if he got it through vaccine-shedding or by a random encounter with measles. 20170708_082751How has he been handling this?  Not well.  It was a huge setback, not just physically but psychologically.  For a little boy who’s been through so much.  This was just too much.  Several times, when the pain was really bad, he talked about just wanting to die so he didn’t have to be suffering anymore.

As a parent there just isn’t much worse.

We are holding to our faith and the power of prayer.  We tell Gabe continuously that he is going to get better.  There is a light at the end of the tunnel.  That God loves him and is going to cause all this suffering to work for his good.

He’s still very much in the thick of it so if you could take a moment and pray for his complete healing, that would mean so much to us.

Thank you.

Suffering and Heaven

18920650_10158894564500074_8516742202078951748_nYesterday I took just Gabe out shopping.  I don’t often get to spend alone time with him and I was reminded what an amazing kid he is.  He has such a tender soul.  He wants to run an orphanage when he grows up… but he also wants to drive a Ferrari, so… 😉

We had a fun time, just the two of us.  On the way home he kept asking me about Heaven and what it’ll be like when Jesus comes back.

I explained to him that Jesus will appear in the sky with great glory, riding the clouds.  That every eye will see him, even those that pierced him.  That we will rise to meet him and be changed, to be like him.  That there will be no more sickness, death, pain…

I got choked up and so did he.  He said, “Mom, I can see him coming.”  I said, “honey that’s the Holy Spirit showing you that it’s true.”

You see, just the day before he had been in a lot of pain.  In between tears and sobs he had asked, “if God loves me, why am I suffering so much?”

The conversation, and the sweet presence of God, was something we both desperately needed.  Something that I need more of.

In my own suffering I tend to turn away.  I feel like I can’t take anymore disappointment at times, without losing hold of my faith.  But yesterday, it was like He peeled back the curtain obscuring eternity and gave us both a glimpse of our future and the end of suffering.  I felt a glimpse of the eternity and wonder awaiting us, and looking over at Gabe’s tear-filled eyes, I know he did too.

I know that Gabriel is being molded in ways I can’t even begin to comprehend.  I know he has a huge call on his life.  Even at the age of 8, there is a level of tenderness, empathy and hunger for knowledge of God that is amazing…. probably as the result of all the suffering he’s had to endure.

We can got lost in the hardships we face but we need to remember that life here is short and eternity is long.  We can’t choose the trials but we can choose how we face them.  Our God loves us.

 

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Autism and Detoxing

I’ll be totally honest, this has been the first summer break I haven’t dreaded. Why? Because my oldest child, Michael, is on the autism spectrum with a side of A.D.D. It’s difficult to understand the strain and chaos that can entail if you don’t have a child on the spectrum.

That’s why I’ve always felt like I needed the break I get when he’s going to school everyday. Michael, like many other ASD kids, does best with structure and routine. Summer break just unravels all of that and leads to…well, stress that was enough to make me dread it months out.

I honestly haven’t this year, at all. Michael has made major progress. He’s been taking silica everyday and I think it has really helped.

See, I’ve done a ton of research (yes, I’m a proud google-mamma) and I believe all his neurological symptoms are a result of the synergistic toxicity described in this pub med study… https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3170075/ and others.

I had Michael very young and I did everything wrong. He got all his vaccines, and always with Tylenol.  It’s kind of a miracle he didn’t end up in worse shape.

But anyways the cumulative toxin overload essentially poisoned his brain and the resulting autistic symptoms were merely the result of cumulative vaccine injury.  He developed primarily sensory and behavioral issues.  Unlike other kids, we thankfully haven’t had to deal with food allergies, asthma, or gut problems resulting from his vaccine-injury.

Sierra….where’s your proof? I never had a dramatic event following a vaccine.  Michael never had a seizure or lethargy (that I can remember). He just went from being a sweet, bubbly, laid-back baby to a completely out of control toddler with major sensory issues. 192254_10150438180300074_8167383_o

I’ve no doubt in my mind that Michael was born perfect. The vaccines set him up for years of heartache and struggle….not to mention putting an enormous stress burden on myself and my husband in dealing with the fall-out.  His autism is nothing more than the degree of vaccine injury that was inflicted onto him as an infant.

For years I had heard about detoxing to reverse autism but I always assumed it was ridiculously complicated and out of reach for an average parent like me.  I just didn’t have a ton of hope that Michael could get better.  We dealt with the same behaviors and tantrums for years.  But then I saw this article http://realfarmacy.com/mineral-waters-remove-aluminum-from-brain/ …Detoxing and improving neurological health in ASD kids could be as simple as drinking a bottle of Fiji water every day.

I talked with Michael about it.  Smart kid that he is, he read the article and really wanted to give it a go.

There’s a big push in the autism community that we need to celebrate our kids autism and act like everything is a-ok.  Michael doesn’t think everything has been great.  Not when he didn’t have any friends at elementary school for two years.  Not when he struggles to control strong emotions he can’t always understand.  Not when he started to realize he was different.

He was extremely gung-ho to start, to the point that he begged me to get him a big supply of Fiji water.  It was touching and also kind of sad that he wanted so badly to gain healing from his autism.  We started right away and also bought him solgar’s oceanic silica (because everyone kept drinking his water!).

That was about three months ago and Michael has made major progress.  The tantrums have been less.  He seems more relaxed and happy.  He is just easier to be around.  Hence me not dreading summer vacation. 19055433_10158911764265074_4485162110289028260_o  I don’t think autism is something to be celebrated.  It has been like a cloud hanging over Michael, obscuring who he really is.  We owe it to our kids to help them to truly heal, so they can become that person they were meant to be.

What causes autism?  It seems glaringly clear to me.  It’s the synergistic toxicity (and the sheer volume) of the shots kids receive.  As the vaccine schedule has doubled and then tripled; autism rates have exploded.  It’s the toxins we spray so we can have pretty, bug-free lawns.  It’s the franken-food we eat.  It’s low vitamin D levels.  It’s the mthfr gene expression which makes it harder for some kids to detox the harmful adjuvants in the vaccines.

When 1 in 3 kids have a chronic health condition- we need to wake up.  In spite of (or because of!) our current vaccine schedule; kids are sicker than ever.  Somethings got to give when the projected autism rate is 50% of American children by 2025. http://www.inquisitr.com/1735694/autism-will-afflict-half-of-the-american -children-by-2025-and-glyphosate-is-to-blame-mit-doctor-says/