#lyme's

[radio-sparks]

http://lifewithlyme.tumblr.com/

Hey guys so this is a girl I know from school, and she just posted this on her facebook. It's about Lyme's Disease and how she lives with it, having just been recently diagnosed. If you or anyone you know has it, you should check it out :)

[mrthomasandme-blog]

Dementia don't care, but more importantly, I'm Good.

(This photo has nothing to do with this post... But I liked it -the book in a boat and the picture- so I'm sharing it with you)

I've had this weird phenomenon going on in my life. This funny thing I promised I'd never do, yet I'm doing, but not doing - all at once. You see, I promised I'd never be one of those church people that says, "Oh things are good." when people ask how I'm doing when really things are in shambles behind the scenes. Nope, I would never be a faker and hide my emotions. But then, this weird thing happened.  You see my dad is dying. Dementia doesn't care about his five kids, his doting wife and their almost 26 years of marriage. Dementia doesn't care that we still have things we want to do or that it'll hurt like hell to put my dad in a care facility when things get too burdensome. No, the crazy, nastyass dementia badger don't care, it don't give a shit. (Please tell me you get this and Jason and I aren't the only one's laughing at this ridiculous video**) Back to the point, my dad is dying as a result of sick and twisted dementia. And I'm good. Things are good. Genuinely. Honestly. Good.  Would I give my left arm and right leg to have him better? You bet your sweet booty toots. But, his brain isn't sticking around. In fact, he's losing his mind slowly, but detectably. And things are good. Because he is happy in spirit and body and mind. And because He is happy with the way our family is clinging so, so desperately to the everlasting joy and unfathomable peace that He is so gracious to bestow upon us. I'm good. I mean it. I am loving my father in a way I never imagined possible. And I'm doing so in the big and little moments as I never would have without this death sentence. Do I make sense here? I'm saying I'm good when I know more words are expected. But really, I am good. We are good. And I'll share lots of words with you, but it's also a lot of heaviness and that can feel burdensome. I've never been about burdens. I guess that's why I'm good. God's shouldered the burden and I'm basking in His goodness. Join me?  P.S. A little bit of business, I'm still cooking and crafting... And I'm keeping the recipes in a book, I just have sort of changed directions here a bit. Give me some time to decide how this little place will be heading...  **Tiny side note: the more I listen to the voice over of that video I realize I could write the same script about dementia and it would take over parts of the brain... Maybe I will be the next YouTube sensation! 

[mrthomasandme-blog]

Hello, Thank You, and Goodbye

Today marks a month since dad was hospitalized. It seems like forever ago and like yesterday all in one lump. And today seems the perfect day to say hello, thank you, and goodbye. These are to you -so figure out who you are and know, I'm thinking of you by name. And I mean my words. The Hello To Those Who've Come In to Say, "Hi, You Can Do This" or at Least Stopped By To Read, Thanks for stopping by. For coming near to us and welcoming us into your hearts. We all feel so lucky to have you here to see God's goodness and glory in its fullness. To share this as a family is special, to share with a growing net of amazing, wondrous people is positiviely indescribable. And if you haven't said "Hi" yet, don't be shy. We don't bite, but we do cry hot tears of sadness and frustration, we do laugh with wreckless abandon when it's inappropriate, and we love vulnerability. So, let me end here, Hi to you too. Thanks for stopping by, please make yourself at home. Amber ----- love lover lymes hater The Thank You To Those Who've Been There "If I Ever Needed Anything", You win because you meant it. Your grace, your sweetness, your tangible love and caring does not go unnoticed. One blessing that has come in all this madness is seeing a group of friends we call family and family that's the best of friends gather around us and hold us up when the days feel too heavy. You've encouraged, you've inspired, you're on our team. And we are thankful. Thank you from the tippy top and bitty bottom of our hearts, Amber ----- love lover lymes hater The Goodbye To Those Who've Gone, I know, this death thing, it's awkward, especially because it's happening slowly and surely. And it's weird seeing us all knowing that it isn't going to be a happily ever after. I understand your discomfort. I hope this is the only reason you've gone. Because it's weird, too weird to endure. As you leave, please know, there's no anger, no hostility. First, because it is uncomfortable. Second, because in this I've learned life's too short to be angry. To hold a grudge. I hope you know, in our hearts, you'll always have a little home. Goodbye just for a short time, Amber ----- love lover lymes hater

[mrthomasandme-blog]

I'm sorry. I'm not sorry.

At 3:03 this afternoon I sent this to my mom in a text:

"And you'd rather do it this way than the way he was trying for on that day."

That day, already an entire month ago, being the day my dad's sweet brain became overwhelmed and he lost touch with reality. He thought people were out to get him, some of those people being us -his family. He wanted it to end. And his solution had become to withdrawal from us.

Who cares how. Or when. Or why.

 All I care about is his failure in doing so.

In sharing our news with friends and family, they seem to look on us with pity and shower us with sorries. And while we appreciate the sweet words and sentiments, we all feel so odd being sorry about the new course our life has taken. Somehow in the shadow of the way my dad has ailed, the years of sadness and fighting, and our newfound love and zest for life after his emergency, our new normal seems perfect. 

There are things for which I'm sorry.

I'm sorry we didn't do things bigger earlier in life. But I'm not sorry he's going to head to heaven earlier than we planned. I'm sorry I let the little things bug hormonal, high-school me when I should have been loving on him. But I'm not sorry I get this blessed time to spend with him before he goes home to His Heavenly Father.

I'm sorry that I'm not sorry about death.

Knowing his brain will be restored, his body cleaned of the ravaging bugs inside of him makes me joyful for him. His masterful business brain will be back. His wits restored. His dry sarcasm enjoyed by all his heavenly hosts.

I'm sorry that I'm not sorry about my dad dying.

I have never been to a funeral. Not once. I've never experienced death. Did I imagine my first time would my dad's? No. But we have this beautiful moment of time where we know he's going to die and we can soak up every little morsel of joy with him. Through this time of transition, I have come to see bits and pieces of God's greatness. And that makes my heart swell with pride. I know my dad's untimely passing (whenever it does occur) is going to be a beautiful -brutiful- occasion where God will sit among us. And, I believe, for a few hours, God will come nearer to us as He welcomes home a good and faithful man while we bid him farewell.

I'm not sorry he's headed to His Father's home.

There's this glorious place dad will be going. I just know it. In fact, a little piece of me is jealous that He gets in on the God-paradise before me. But, a big, HUGE part of me can't wait to live out his leagacy. I already know when it's my time to join him in Heaven, he will be up there heading some of God's greatest projects. He'll make sure the floors are flat, the concrete mixed just right, and the laborers (though I imagine they have a cooler name in heaven) getting what they deserve for their hard work.

I'm not sorry we'll be here to honor him and, more importantly, Him.

[mrthomasandme-blog]

Lyme's Lesson [2] Prayer & Your Heart

In March 2009, we started the long journey of finding a cause

and cure for my dad's memory loss.

Three years later we marched on fighting Lyme's Disease and

learning more about ourselves and God every day.

Here's number two of seven bits of knowledge we've picked up along the way:

Prayer may not seem to change your immediate circumstance, but it will change your heart.

I wrote all seven of my Lyme's lessons out before my dad was hospitalized. Before we stopped fighting Lymes and started embracing dementia -as much as one can embrace such a condition. I considered not publishing them... But realized God's fullness is furthered in the way these lessons, both learned and not yet mastered, are playing out in our daily lives. 

The number of people praying for my dad's mind and our family's fight is far greater than I can imagine (this I know by the outpouring of emails and calls in the last two weeks). It's undeniable that he -we- is covered in prayer.

 Prayer is a funny thing -not in the ha, ha, ha way- but in the way it reveals the vastness of our Lord and the deep-as-a-puddle-in-the-midst-of-a-heatwave knowledge we have of God and our very own self. 

Boy oh boy, have we prayed.

For healing,

for hope,

for continued faith,

for strength in our weary hearts,

for answers,

for more of this,

for less of that,

for anything and everything God has for us. 

 We found our prayers perfectly described in Psalms: 

 "Then they cried to the Lord in their trouble, and he delivered them from their distress. He made the storm be still, and the waves of the sea were hushed. Then they were glad that the waters were quiet, and he brought them to their desired haven." -Psalm 107:28-30

 It's simple enough.

 But the storm wasn't settling. The waves were quieted. Why God? You seem to have forgotten us, left us to fend for ourselves and we aren't yet ready. Why? Damn it. Why? And then, He did it.

 He showed us that what we thought was the insurmountable storm was, in fact, the pre-storm. The part where the pavement starts to smell hinting of the rain to come, where the drizzle starts and the wind is a-blowing. But you don't ratchet down the hatches because you ain't seen nothing yet.

 Yeah, we were crying out "wolf" and didn't even know it. We were holding onto an idealized miraculous recovery while ignoring the dark clouds outside our wide-open windows. But then He did it.

 We didn't get the picture perfect present we were asking, pleading, begging God to bestow upon us -healing and full restoration of my dad's mind and body. In fact, we got something more, something larger, some small glimpse of His vastness and our place within that enormous, glorious place.

 What He had worked out for us was, in fact, far more glorious than our little cliche, of-this-world, happily-ever-after story. (more on this tomorrow) Through years of indignant prayer where I asked God for what I was sure was best for me, my family, my dad, I ignored the lesson God so wanted for me to grasp. Prayer isn't about me.

 Rather than pray about my wants, needs, wishes, desires, I need to flip my prayer life on its head and pray for His glory, His plans, His kingdom. For my receptors to be on high alert so I can catch His messages both large and small. For my stubborn heart and head to relinquish control and enjoy His majesty. For whatever end our story has to be one that reveals His goodness and grace.

[mrthomasandme-blog]

That Thing Life's Good At

This may be the most incomprehensible post ever.

Or at least the first of many that you and I will struggle to make sense of.

I long to write, to put something out there for you.

But life is doing that thing it does so well,

changing.

And it makes me uncomfortable.

And frustrated.

And longing for more and less all at once.

We spent this last week in the hospital with my dad.

This man.

(He always does that with his smile thing... Talk about a model)

Talk about hard.

Our family was broken.

We spent three years fighting a disease that had a hold on my dad

and on us. 

Each and every one. 

His body revolted on Sunday and he got sick.

The ambulance came.

We cried and worried and fought with God.

We sat in a link in the ER holding hands.

The three of us.

Linked like a small chain.

Praying.

Wishing.

Wanting more and less all at once.

And then He did something amazing.

He did what the bible says.

He provided.

I've heard God provides more times than I've showered in my life.

(And that's a lot, I'm a clean person)

But I saw it happen. In every moment.

He does.

At times he provided more and at others less.

He provided all at once.

Doctors, nurses, family friends.

They showed up.

They spoke words to us that were not theirs, but His.

They cried with us.

No dumb trite words telling us it'll be ok.

Just promising to be what they've always been despite life's changes.

They laughed at our corny jokes to try and make light of darkness.

They felt the weight.

The pressure that's making us God-diamonds.

And they helped settle the dust so we could shine.

That we did.

He will be glorified.

We are determined.

In grief,

in joy,

in frustration,

in calm,

in routine,

in change.

In all the life brings, He will remain.

And His glory continues.

(as will this story)

[mrthomasandme-blog]

Lyme's Lesson [1] Grace

In March 2009, we started the long journey of finding a cause

and cure for my dad's memory loss.

Three years later we march on fighting Lyme's Disease and

learning more about ourselves and God every day.

Here's number one of seven bits of knowledge we've picked up along the way:

Sometimes grace is grin and bear it -not ballerina beautiful.

For as long as I can remember I've been a tripping-over-myself-kind-of-girl.

It could never be blamed on long legs or growth spurts, it was due to my lack of grace.

Never would I make it as a ballerina. Never.

Then I go to church and there's this grace thing again. I immediately assume I lack it.

Little did I know, grace isn't always pointy-toed, tutu-clad beauty.

The grace I've met has been a God-given miracle.

It's the ability to stop whining and keep trucking.

It's holding tight to that last sliver of hope because you've learned to fight.

"For God did not give us a spirit of timidity, but a spirit of power, of love, and of self-discipline."

-2 Timothy 1:6

I know God's grace is upon us, but it does not place us in a protective bubble.

We are not unscathed. 

There's beautiful bumps and bruises that remind me of the battle we've, so far, endured.

I believe He made us to take major impact, to bend without breaking, 

to rise up and fight when pressed down upon.

My goal is not just to fight the good fight but to do so until I have nothing left in me to expend.

In 2 Corinthians 12:9, God says,

"My grace is sufficient for you, for my power is made perfect in weakness."

His grace covers and protects the wounds that mangle my flesh.

My angry words and ungrateful heart revolt against His plan, yet He keeps me roped in.

While I want to scream and shout and run away singing, 

"Run, run as fast as you can, you can't catch me I'm the Amber Whoa-Man!" 

He provides grace. He also provides opportunity to grow, to stretch, to change.

Without added pressure, diamonds are not formed. The same goes for us.

Without added pressure, we cannot be a gleaming God-diamond in the rough.

We will just sit a deposit of invaluable minerals longing for more. 

But, He provides grace. 

In the little penny-on-the-ground ways, and in Statue-of-Liberty monumental sorts.

My point is trials will come, you will be stretched and pressed, 

just know, 

His grace is enough. 

[mrthomasandme-blog]

when life gives you Lyme's, make a margarita and CELEBRATE!

i wrote a blog in april about the tough road that my family and i have been enduring... you can see it here. but the story doesn't end there, in fact, the end starts here!

last time i wrote i spoke of the goodness of God during times of difficulty and the fact that my family was leaning into His promise in jeremiah 29:11 during this extraordinary difficult time. we, as a family, were being refined and perfected for His work.

"For I know the plans I have for you," declares the Lord, "Plans to prosper you and not to harm you, plans to give you a hope and a future." -Jeremiah 29:11

well, the story has come so far since april. after lots of test and many months of patiently (or maybe not so patiently waiting) we have an answer. Lyme's Disease. yep, the disease you get from being bit by a flea that is carrying it. i know, i always thought that hunters out in the wilderness of montana got this... but it turns out a southern california man can contract the disease and suffer from it for a decade without detection.

thank goodness for a doctor who was as committed to finding answers as house (yep, the show). and now we work with the doctors to find the best way to get the disease under control --nope, it's not curable.

oh, how great is our God. life has changed in a way that we could never have imagined, but i wouldn't take a minute of the trials and tribulations back. i hope God thinks i'm a shinier piece of gold in God's collection after enduring years of fire.

"And God saw everything that He had made, and behold, it was very good." - Genesis 1:31

just like genesis, this is good.

God is good.

amen.

song of the day:

light up the sky

by: the afters

when stars are hiding in the clouds, i don't feel them shining

when i can't see You beyond my doubt, the silver lining

when i've almost reached the end, like a flood You're rushing in

your love is rushing in

hallelujah, the sky is bright and shiny again.

http://www.mrthomasandme.com/2010/04/refiner-fire.html