DEAR EXTRAORDINARY & BRAVE SPROUT

our dog harrison is a rather unique dog with an unusual skill set - he dabbles in DIY projects, sews, tweets, loves plaid, surfs the internet, never tires of eating cheese and recently has been moonlighting as a Lyme PAW-ster boy and advocate (aka #lymepooch).

(read more about harrison here or visit his facebook page here). 

harrison also has a really big heart for kids with lyme. he was on the computer more than usual this week - turns out he had some stuff he needed to get off his chest. i let his paws do the typing which ultimately culminated in him writing a very special blog post for kids with lyme. 

so, yes, you are about to read a blog post written by a dog. will wonders ever cease? apparently not as he also has excellent punctuation and command of the caps lock key. unlike me.

so without further ado, i hand over this post to our wonder pooch, harrison...

Harrison here...so it's been a pretty ruff here since Sparky started his new treatment and it's made him really sick. His heart hurts too. I can hear the aching in it. And I'm feeling sad about that.  

And you know what? I can feel the heaviness and hurt in my people's hearts too.

It's got me thinking -  I bet there are a whole lotta other kids with lyme in need of a big ol' lymepooch smooch because I can actually hear the aching in each and every one of your brave and bruised warrior hearts. (Dogs have exceptional hearing) So this goes out from my heart to yours...

Dear Extraordinary & Brave Kids with Lyme,

I know what you are dealing with bites. Big time. In fact, it downright stinks!

I can feel the way your tender little heart is heavy and weighted down by this battle. And that life just feels scary and hard and really, really tiring.


You've probably grown really weary of taking all your meds - especially when they make you feel sicker. I know it's super duper hard to keep taking them when they don't seem to be helping. Chances are you are probably thinking,

"What's the point of taking all this stuff when it's not making me feel better or grow stronger?"

Have you ever wondered about how things grow? I sure have. I live in the city and I don't have a back yard where I live so I don't have much experience gardening. But I like learning about stuff, so one day I planted a little seed.

I had to bury that little seed way down deep in the dark earth - far away from light and life. Then I had to take care of it. I had to water it, feed it and make sure it got some sun. And that was kind of weird to do because all I could see was a little pile of dirt. 

Do you know why it was super important that I keep taking really good care of that dirt pile? Because my tiny little seed was actually sprouting way down there in the dark! Even though I couldn't see any signs of life, that little sprout was growing every single day. 

It takes a really long time for a little seed to sprout and then grow strong and tall enough to push through the darkness into the light. 

It was really frustrating and tiring to do all this stuff to take care of my seed when all I saw was a pile of dirt and no signs of life. It was really hard to even believe that my little seed was sprouting and growing underneath all that dirt. I had to be so patient and just trust that all the things I was doing to take care of that little unseen seed was really helping it to sprout and grow.

It's kinda the same with lyme treatment. You gotta trust that what your parents and doctors are telling you to do is helping you heal and grow. You have to keep believing that all those pills and IVs and water and healthy food is actually helping your body heal - long before you feel stronger or healthier. 

Here's the thing - I can't tell you exactly when you'll finally feel better...but with absolute certainty, I can tell you this: 

You are extraordinary,
you are brave,
and
extraordinary and brave people overcome bad stuff every single day!

You are one of them! And just like that little sprouting seed - you are growing stronger and healthier every day - even if you can't see or feel it right now.

I know it's really hard to even believe that you are extraordinary and brave when you feel so bad and have been sick for a really long time.

Chances are that sometimes, late at night, as the world sleeps, you lay awake in a crumpled heap of pain staring into the dark of the night and you feel very alone, very small and very scared.

Chances are you think about a lot of tough stuff and maybe you've got some secret fears and worries;

Like how bewildering it is to live in a body that works for an hour or two and then quits for days on end.

How some of your symptoms are so scary you can't find the words to describe them.

How some of your symptoms are so confusing that you hide them from your friends and family.

How sometimes you don't even tell your parents how bad you hurt cuz you don't want to worry them.

Chances are you worry about the future - you wonder when or if you will ever get better. If you were born with this disease maybe you've even thought you were destined for a lifetime of sickness.

Chances are you've lost friends and sometimes strangers stare when you roll by 
and maybe all of that makes you think that somehow you are unlovable, unworthy or weird. 

Chances are you've had some teachers that didn't believe you when you said you were trying your hardest but sometimes it's just really hard to remember stuff or read or write. Maybe they even said you were faking it or just being lazy.  

Chances are you've had some doctors tell you they don't believe you are sick. They may have even been downright cruel and laughed at you and said you were just using your wheelchair to get attention.

When people, especially big people that are supposed to help us, don't believe in us or say really hurtful things or even bully us, well, that is super confusing, frustrating and maddening. It can bruise your heart and tear you down. It can even make you doubt yourself or hate yourself.

I know that sometimes all of your thoughts and feelings get all twisted up inside you. Sometimes they make you explode and cry and scream and rage. I know how sad and confused and maybe even ashamed you feel when that happens.

I want you to know that it is perfectly normal to feel and think about these things. I also want you to know that not every thought we have is true! Thoughts can be real tricksters - sometimes they lie to us and when we believe those lies, we start to feel really bad about ourselves. In our house, we call that stinking thinking!

Stinking thinking can make you think that the bad things that happen are somehow your fault or you deserve them or that things will always be really bad.

I know that sometimes you think that maybe it's some how your fault that you are sick - maybe you told a lie once or were mean to someone or got sassy with your parents and that's why you are sick. Maybe you even think you did something so big and bad that you actually deserve to be sick and in pain.

Dearest beloved sprout - it is not your fault that you are sick or not better yet.

I know that sometimes it is really hard to remember stuff or write or read but that is not you - that is the bugs in your brain. You are not bad or dumb. Those bugs are! This suffering that you are enduring it has made you kind, thoughtful and wise beyond your years. 

And that wheelchair that you are in - you didn't choose it for attention...you use it to DO life... even when it is hard, you hurt all over and you know people are going to stare, you get in that chair and show up to do life the best way you can right now. Can you see how extraordinary and brave that makes you?

Dearest extraordinary and brave sprout - you are NOT lyme!  You are SO MUCH MORE than this thing that has taken up residence in your body. 

You are just like that extraordinary and brave little sprout - you are an unfolding miracle, a downright masterpiece, a lovable, worthy, tough NINJA sprout that is growing and healing in spite of all the dirt and darkness that surrounds you.

You know how I know that you are extraordinary and brave?

Because you woke up today and even though you felt horrible and it feels like everything stinks, you kept fighting.

WOAH - something here actually does stink for real! 
Oh, wait, my bad, I just farted!

Pardon me!

OOPSIE POOPSIE!

I think you just smiled, didn't you?


Farting does that to people - even big people (but sometimes they act all huffy and proper about it cuz they're a bit embarrassed by it. The thing that is funny about that is the older you get the more you fart because you have less control in that area of your body!)

I bet you're grinning now... maybe even giggling a bit.

You know what?
That makes you extraordinary & brave - because, in spite of how bad you feel, you are smiling.

Just PAW-se for a moment and think really hard about that.

You just smiled... 
Maybe you are so sick right now that you haven't been able to leave your bedroom for days, or play in weeks, or got to school in years -  yet you are sitting there smiling.

That makes you extraordinary. And brave. Really, really brave.

You are NOT lyme - You are an extraordinary sprouty-person living a really brave life.

I see that. 

There are going to be days when it gets really, really hard
and
hurts more than you think you can bear 
and
you are not going to feel extraordinary or brave.

When you have a day that just stinks so bad, I hope you'll remember this...

You are an extraordinary sprout living a really brave life and this gassy pooch is rooting for you. I love you and I believe in you.

Affectionately yours,
Harrison Phineas Goertzen, #LymePooch

THESE TWO THINGS

i have spent the last 3 months in a desperate and lonely struggle for my body and mind. it is as if the ground opened up and swallowed me whole...and i have had no desire, inclination or ability to claw my way out of the pit. and i'm not out of it yet. not.even.close.

there have been no postings since november 4 because it has been bad. very bad. it all got a lot worse immediately following that last post.

it all just feels impossible to explain.

november and december passed by in a blur 
both sparky and i came down with pneumonia
that stretched on for 6 weeks

followed closely 
by a 4 week bout of strep 

my tremor and twitching attacks that i blogged about in my last post (started in october) are still ongoing
and
so is the never ending bouts of daily vomiting.

the bout of pneumonia exacerbated and significantly increased my vomiting and even though the pneumonia has now resolved, the vomiting has not decreased.

there appears to be no end in sight. 

my medical team is trying to figure it all out.

i have lost 11 pounds. i have adrenal and thyroid issues, soaring ACTH levels, hypoglycemia, anemia, blistering sores and rashes, hormonal imbalances, sound sensitivity, head pressure, nerve pain, insomnia, nausea, nutritional deficiencies, anxiety and panic attacks
and
the dog is pooping out my hair.

say what?

the dog is pooping out my hair.
yes. you read that correctly.

(my hair began its mass exodus in december. every where i go, i leave a trail of it behind me. the dog is swiffer-like and is always tailing me...you can use your imagination to fill in the rest of the details.)

like i said its all sort of unexplainable.

that's not even the worst of it
that's just the tip of the iceberg
but 
i don't currently have the words or the where with all to explain what lies submerged beneath the icy surface

to see me no one would ever know all that is going on
which complicates matters.
i look fine
maybe a bit thinner
but 
more or less, i look healthy

and
that just makes everything all the more difficult to explain

so i don't even try to explain it anymore

unless someone knows what to look for or sincerely wants to see it, i am invisible and so is my pain and struggle. and i suspect i'm not the only one who feels that way.
in fact, i am acutely aware that there are others that are hurting and fighting their own private battles. 

this week, i came across two things 
and i felt compelled to share them.

so i am crawling out of my cave of the unexplainable to share them.

the first is this letter that my daughter avery penned a few years back

and
the second is a post that was penned by my friend and fellow blogger, Michelle at My Lyme Symphony. reading it left me blessed me and weeping all in one breath. 

Please visit Michelle's blog, My Lyme Symphony to read the entire post.

Here's an excerpt from Michelle's post, to get you started - 

I understand you.

I understand the depth of what you go through. I understand the undercurrent of emotions. I understand that you've lost so much along the way. I understand not everybody can see it.

I understand how very different life is now. I understand your uncertainty. I understand those moments of despair. I understand the limitations and how frustrating they are. I understand the loneliness. I understand the brokenness. I understand the words that are often left unspoken.

click here to go directly to the rest of her post

may each of you somehow find comfort and peace amid the heartaches and heaviness in your life.