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…

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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/

A Good Day

Yesterday was a good day.

My little girl turned five on Thursday and my mom and step dad came out last night.  They gave her possibly the best gift for her- a gumball machine! 18519821_10158791140855074_8977889329133441059_n Shiloh is a bit obsessed with gum so it’s perfect for her.  Gabe had a good day too.  His little friend came over and he got to play and have fun like a “normal” kid for the first time in a loooong time.  Then he felt up to playing outside with another friend for another hour and a half.  Lots of giggling and running around.  It made me so happy because since we quit topical steroids nearly three months ago he has been going through hellish withdrawals and had many days where he had to carry him because he was too weak and in too much pain to walk.

20170519_182541So he had a great day and got to have cake and ice cream!!  You can see there is still some redness and scabbing on his face.  But he has come so far from these days…  20170225_083718   I got another gift as well.  Gabe had been upset about getting disciplined by his dad.  He was really pouting but I went up and cuddled him anyways.  He said, “Mom, I like being around you because you are always really happy.”  That meant a lot to me because I have really struggled with depression but I don’t want it to affect my kids at all.  I’m so glad Gabe doesn’t see that.

 

My Power Source

I haven’t written in a while.  Summer is always a busy and chaotic around here!

I also switched jobs.  Now I work part time as a barista at a Target Starbucks.  Honestly, the job I’ve wanted for a long time.  I love Target and I love Starbucks!  I also love getting a discount, yay!  13626415_10154249884502429_8547029261097152568_nMy friend snapped this on my first day.

My husband’s brother and his family visited for the first time from Virginia a little over a week ago.  It was incredibly special.  We had a blast, hanging out and doing tourist-ey things with them.

Tomorrow is a big milestone for me.  I’ll be turning 30.  I’m kind of sad to leave my 20’s behind, but older = wiser, right?

I watched the movie ‘Miracles from Heaven’ a few nights ago.  At about 20 minutes in I started crying and couldn’t stop.  It just touched so many nerves for me.  The child in pain, the mom losing hope- it’s definitely been where I’ve been at for a long time.

My 7 year old son, Gabriel, has had severe eczema for years now.  It has been so tough for him.  Lately we haven’t been letting him play outside because he reacts so strongly to the allergens.  His eyes are always bright red lately.  There’s times where he can’t sleep because the itching or pain is so intense.  And all of this with daily anti-histamines and steroids and expensive lotions.  It feels like a never ending nightmare.

Watching him suffer, day after day, had really hardened my heart towards God.  Gabe had asked me, “why did God let me get eczema?” and I’m at a loss for words.

No, it isn’t as serious as what the Mother was facing in the Miracles movie.  But his condition has been devastating for him.  To the point that when we went to meet his cousins (in 90 degree heat) he cried because he wanted to wear a sweatshirt to cover up all the redness, bumps, and open sores.  He is also limited in his daily ability to just be a kid because the itching and allergies make him so miserable.

We’re still going through it.  There’s no end in site.

I think most (if not all) Christians face a make or break trial.  Something devastatingly hard, something that never seems to end, something that hits home.  Those times test what we know to be true.

God was speaking to me through that movie.  I realized I’ve been ‘under’ the trial and the devil was running roughshod through my life.  In my pain and sadness I was distancing myself from God, my power source, and leaving myself very weak and vulnerable to attacks from the enemy.

“Now if we are children, we are heirs- heirs of God and co-heirs with Christ, if indeed we share in his sufferings in order that we may also share in his glory.” Romans 8:17

I have resolved to hold tighter onto Christ through this.  I believe in miracles.  Especially the quiet ones, where God uses tough circumstances to do an incredible work in us.

My sweet boy, with his Daddy….

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