“It’s the stuff that we avoid because it hurts

that is exactly the stuff we need to tackle.”

Back on February 2012, I wrote in my journal about the hardships that I was going through and the unknown I was walking into with Jackson.

At that time I took Jackson to the hospital for an echo of his heart,

lots of bloodwork,

and some x-rays.

I got the test results back and the echo of his heart was normal as were the x-rays.

But the bloodwork came back with extremely high numbers indicating that

something big was still going on inside my little boy.

Our pediatrician got me hooked up with a pediatric neurologist and I waited a few weeks and finally went in to see him.

It was February 22nd, 2012.

I remember that day so well, and I always (unfortunately) will.

I remember playing with the boys that morning and having a grand ol’ time,

I remember I wore this cute pink top because it was my favorite color,

i remember i took this picture…….

this picture now has significant meaning to me.

It’s been over  2 years since that day and this photo signifies

the last day I had where I felt joy.

Full, unbridled, optimistic, full of life happiness…..JOY.

Because I thought I knew hard before that day.

See, my whole life I have been a very happy, optimistic person.

I actually have a HUMONGOUS love of quotes and I’ve had books where I write my favorite quotes down ever since I was a little girl.

I’ve always been drawn to them,

I’ve always written them down and hung them all around,

they’ve gotten me through all sorts of things.

So as I look back, I think “hmmm….maybe there was a reason why I’ve always loved quotes.

Maybe I was building a library for myself for when something really terrible happened,

I would have plenty of books of mine to go back and look at and uplight myself.”

February 22nd, 2012 Jackson and I went in to see this specialist and had no idea what to expect.

But the worse thing ever was about to smack me in the stomach with the news the doctor would give me.

He took a very quick exam of Jackson and mumbled some things and calmly said,

“I think your son has either Duchenne or Becker Muscular Dystrophy”.

Just like that. As cold as stone.

Actually, I can’t even get across to you how cold he said it to me.

I had NO IDEA what that meant and as I scrambled to write those things down and asked him how to spell it.

I will never forget the sadness,

the grief,

and in that moment my stomach fell down to my knees

and I couldn’t breathe right.

He told me to get a genetic test done on Jackson and in 6 weeks I’d  know the answer.

and then he walked out.

He also said some rude comments to me, but I will not share them and will try to put them out of my memory.

I walked out, went to the car, tried desperately to hide my emotions from Jackson who was happy and had no idea what was going on.

But I failed.

I burst into tears and I just remember thinking, “I don’t understand”.

See, I hadn’t done ANY research and didn’t know a thing about what the doc was talking about.

Later that night I googled it and this is what it said:

 Duchenne muscular dystrophy is an inherited disorder that involves rapidly worsening muscle weakness.

Duchenne muscular dystrophy is a rapidly-worsening form of muscular dystrophy.

By age 10, the person may need braces for walking. By age 12, most patients are confined to a wheelchair.

There is no known cure for Duchenne muscular dystrophy.

Duchenne muscular dystrophy leads to quickly worsening disability.

Death usually occurs by age 25, typically from lung and heart disorders.

I read that and I just sobbed, and sobbed, and sobbed.

I couldn’t catch my breath.

I was just sitting there shaking.

Then I ran to the bathroom and got terribly sick.

I shut my laptop, I was numb, I couldn’t sleep.

I went into Jackson’s room and just laid next to him, and cried.

I eventually went to my room and fell asleep, but I woke up at 3 am, got sick again, checked on Jackson, and then slept until 4am.

Right then in the haze of waking up I thought this whole thing was a dream.

I thought to myself,

“What a horrible dream”

and then I realized it wasn’t a dream.

It all hit me like a ton of bricks, like I was literally getting the crap beaten out of me.

I couldn’t go back to sleep.

I just laid there…..numb.

I took him to school and came home and I just sobbed in bed.

I decided to get out of the house so I went to Costco, but it was no luck, I wandered around like a zombie and didn’t eat all day.

I just felt so empty.

I am just so hollow inside.

I don’t know why this is happening.

Later that night the bishop from our church come over and gave Jackson and I blessings.

I really think it helped.

My heart felt calm.

Everyone just keeps trying to reassure me that the test will come back negative,

that doctors are wrong all the time,

but I know deep down that it isn’t the case.

I can feel it,

I think he truly does have this disease,

and that’s why I’m breaking down so bad right now.

I was driving to pick up Jackson from school and I was blown away by the weather.

It was a gorgeous sunny day when I got on the highway and then about 2 seconds later I hit a giant rainstorm.

I had to capture this crazy phenomenon, mostly because it felt like my life.

In the rearview mirror was the beautiful day, and up ahead this is what I was heading into.

It was total symbolism for me in the fact that looking back things were easy, but now I was headed into the eye of the storm.

Three days later…

Ever since I’ve gotten this news it’s been hard to eat, sleep, do anything.

I’ve felt like dying,

I’m constantly in the bathroom getting sick,

I feel hollow,

I’ve been so cold,

I barely get through the day and fall straight asleep at 10pm,

but then I wake up in the middle of the night and can’t settle my mind enough to get back to sleep.

I don’t do laundry,

I don’t clean the house,

I haven’t made a meal,

I haven’t worn makeup,

I haven’t watched tv.

I feel like a shell of a person,

i don’t smile,

my heart hurts,

i’ve cried so much.

This morning I woke to Jackson puking all over himself and his bed and his pants were soaked with poo.

Logan was delightfully in his room screaming at the top of his lungs.

5 bags of puked on bedding.

I don’t know if it was the blessing I got a few days ago or because I was FORCED into doing laundry, but today was the first day that was o.k.

I didn’t spend the majority of the day crying.

I spent the day playing with Jackson,

I got him new “dino” sheets,

we watched “Dolphin Tale” while cuddling on the couch,

we painted our feet with fingerpaint  and made a family collage.

I feel warm again inside.

I feel like I am getting a teeny tiny bit stronger.

I know he is my angel.

A few weeks later at church I found this quote  in our monthly newsletter and it really spoke to me:

“There must be a gap of time when things don’t make sense, when confusion ruffles our peace of mind.

But that gap is a special place.

The gap is where faith is found.”

Then on April 2nd I got the news.

The test results came back,

they were positive.

Jackson has Duchenne Muscular Dystrophy.

He explained, “in refining silver, one needed to hold the silver in the middle of the fire where the flames were hottest as to burn away all the impurities.”

The person was silent for a moment
and then asked the silversmith,
“How do you know when the silver is fully refined?”

He smiled at her and answered,“Oh, that’s easy — when I see my image in it.”

What a simple yet profound story, right?

I’ve felt that lately God is holding me in that hot spot, right in the heat of the flame.

But I am holding tight to the fact that he has his eye on me, that he is there for me and will not let it destroy me.

It is all part of his plan to make me more into who I should be, more Christlike.

I know that sometimes he puts us in OVERWHELMING circumstances.
Because that is why we’re here.

We’re here to be tested,

to show who we really are,

what we will do,

if we will stand or if we will fall.

We live in a very toxic world today.

Poisons and dangers abound and keeping our children healthy can be very difficult.

I never thought I would be one of those “green” people, but after doing research and learning so much more about the product’s I’ve been using, it makes it impossible to go back to using them.

It reminds me of the quote that I pretty much live by…..

When you know better,

you do better.

I’ve made a list of the things I’m changing and wanted to share:

Acetaminophen

Acetaminophen shuts down the detoxification pathways in the liver, which rids the body of metals and poisons.

Ibuprofen is better for a pain reliever or if a fever reducer is needed.

Read more here.

Arsenic in Chicken

The good news is that arsenic-free chicken is more readily available than it has been in the past, as more processors eliminate its use.

Tyson Foods, the nation’s largest chicken producer, has stopped using arsenic in its chicken feed.

In addition, Bell and Evans and Eberly chickens are arsenic-free.

You can read more here.

There is a growing market in organic chicken and birds labeled “antibiotic-free”, they both don’t contain arsenic.

Excitotoxins

 Strong scientific evidence suggests these substances could cause brain damage in children, adolescents and adults; with strong emphasis on children and elderly individuals. They could affect the development of a child’s nervous system;

resulting in learning and emotional difficulties later in life.

Excitotoxins include MSG, Aspartame and all other sugar substitutes, aspartate, Cysteine, cysteic acid.

The following are other names for MSG-

Monosodium Glutamate,

Hydrolyzed Vegetable Protein,

Hydrolyzed Protein;

Hydrolyzed Plant Extract,

Plant Protein Extract,

Sodium Caseinate,

Yeast Extract,

Texturized Protein,

Autolyzed Yeast,

Hydrolyzed Oat Flour,

Calcium Caseinate.

Things that help excitotoxin damage: Coenzyme Q10, acetyl-L carnitine, niacinamide, riboflavin, methylcobalamin, and thiamine.

 Fluoride

Fluoride is a neurotoxin and should not be consumed by children!

It is implicated in thyroid disease, bone disease and arthritis.

In the scale of toxicity, fluorides fall between arsenic and lead.

It is in our water, which is why we have put in a reverse osmosis water filtration unit in our house.

Fluoride is in toothpaste, some mouthwashes and dental cleanings (ask that they only use pumice to clean your child’s teeth.)

Schools routinely give children fluoride during “health services” so make sure you inform them IN WRITING that your child MUST NOT be given fluoride during health services.

Have this written into your child’s IEP.

Let me tell you, i scoured the internet for some good, safe toothpastes and it took awhile.

But i found some that I am happy with, the Jason brand has a couple of kid varieties and so does Spry.

Be careful when buying Tom’s of Maine brand because we had one that was carried in our natural food store,

but in tiny letters it said that fluoride was added.

You can either order the fluoride free one online or I found mine at Kroger in the natural market section.

The others I ordered online.

 I also just learned that there is mercury in High Fructose Corn Syrup.

Please be aware and check out the labels at the store before you buy these products,

typically found in sweetened beverages, sodas, breads, cereals, breakfast bars, lunch meats, yogurts, soups and condiments.

I was surprised that it was in our ketchup and bbq sauce. Guess where those bottles went……TRASH!

 Nitrates/Nitrites 

Foods containing nitrates or nitrites, like those in preserved meats, bacon, ham, hot dogs and pickles should be avoided,

since children with autism are known to have higher levels of these toxic derivatives of nitric oxide stored in their bodies due to an inability to detoxify.

  This is a major concern seeing as I need to purchase a few different brands now because Jackson loves hot dogs, lunchmeat, bacon, ham, and pickles.

I found nitrite,nitrate, gluten free ones at Costco this week and stocked up.

I also found that Boar’s Head lunchmeat is free of these as well, a lot of deli shops use this as their meat.

Trader Joe’s is supposed to have the healthiest, best pickles.

 PBDEs (polybrominated diphenyl ethers) –

Here comes something that really frightened me………………

Fire retardant chemicals are in beds, pajamas, furniture, sofas, televisions and computers.

This basically means the fire retardant chemicals are very toxic to asd kids and just about ALL kids pajama’s have them.

I have found organic pj’s that do not have these chemicals in them at Hanna Andersson online, Costco has an organic pj line, and carter’s has some- but you have to make sure that they say the garment does NOT have flame resistant chemicals in it.

Just check the tag and make sure it doesn’t say anything about flame resistant chemicals.

You are safe if you stick to the 2 piece cotton ones.

Sunscreen 

Watch out for these bad ingredients: Oxybenzone (Benzophenone-3), Micronized Titanium Dioxide, Nano Titanium Dioxide, Nano Zinc Oxide.

Also I tossed out all of our baby bath products and will now only use California Baby.

They are gluten, soy, dairy, peanut, etc free and are the best!

They have bath bubbles (with bubble wands!), shampoo, baby body wash, lotion, diaper cream, sunscreen, and a few other products.

I love them, they are a little more expensive, but totally worth it.

You can find them at Target.

Teflon in carpets, clothes and pots and pans – no nonstick or aluminum pans – glass, cast iron or stainless only.

According to the Environmental Protection Agency, some of the highest C-8 (Teflon chemical) levels were found in children.

This is super scary and we are now taking down ALL of our non stick cookware and investing in a stainless steel set.

We also are only using glass baking pans, getting rid of all plates and bowls that are made in china (because of different standards/code of production) and that have color, paint, etc on them because they can contaminate the food.

We are purchasing all white, american made, Corelle brand plates and bowls (careful though because their plates and bowls are made in the US, but their mugs are made in china, so just read everything carefully so you are informed).

Make sure your childs drinking glasses are also glass and american made or stainless steel ,so that you know the standards are being achieved when producing them.

I found some great stainless steel sippy cups on amazon last night.

 Try to avoid #7 plastics.

Plastics with the recycling labels #1, #2 and #4 on the bottom do not contain BPA.

We’ve also switched to all organic cleaners for the house.

The brand of organic cleaners i like is called Baby Ganics and Honest by Jessica Alba. You can find it online or Target carries them.