They Weren't My Words Anyway

The grass withers and the flowers fall, 

but the word of our God endures forever.

Isaiah 40:8 NIV

As I reflect on how little I write these days, and how often I used to write, I miss being able to go back and read some of the stories and narratives that once I put onto this little digital thing called the internet.

You see, I once did a lot of guest blogging for a special needs ministry blog. And often, I would connect my stories to my personal blog here because they were our stories; the stories of my family, and how our faith grew or was shaped through our journey.

I never kept hard copies of what I wrote because to me, "it would always be on the internet."

Now, however, my personal blog here has a number of posts that are from those "guest blogging days" and give you a taste of what my post was about, but then contain a link that goes NOWHERE. Literally, it takes you to a FORBIDDEN page.

I felt quite melancholy when I realized this. My stories were gone. None of them have "an end." It's as if you start a tv show and only get 1/3 of the way through every single episode!

But God quickly put my feelings in check. He reminded me that everything around us is temporary and that it all belongs TO HIM.

Every sunrise, every stream, every mountain.
Every heartbreak, every fever, every tear.
Every word, every breath, every step. 

If it were God's will for those words I wrote to still be found, He would make them findable. If God has a new story He wants me to tell, He will have me write it. If God meant for those stories I typed to be for one special period in time, then that is where they are and that is where they'll stay.

Because, as much as I'd like to claim ownership of those words and rights to those stories, the fact of the matter is, they weren't my words anyway.  They belonged to God. 

Long lay the world...Until

So, I was pretty much a blubbering mess today during worship (thankfully I was in the congregation and NOT up on the stage). I wanted to share just what was so special about our worship today that it caused me to weep more than sing.

It started with “Oh, Holy Night.” The words: Long lay the world in sin and error pining, ‘til He appeared and the soul felt its worth struck me today as never before. Having just completed an in depth study of Hosea and Amos, LONG LAY THE WORLD became suddenly ALIVE to me. In Hosea 10: 13-15, for example, we read:

You have plowed wickedness, you have reaped injustice,

You have eaten the fruit of lies, 

Because you have trusted in your way, in your numerous warriors, 

Therefore a tumult will arise among your people, 

And all your fortresses will be destroyed, 

As Shalman destroyed Beth-arbel on the day of battle, 

When mothers were dashed in pieces with their children,

Thus it will be done to you at Bethel because of your great wickedness. 

At dawn the king of Israel will be completely cut off. 

(emphasis added by me).

Humanity was hopeless...Israel was worshipping idols in God’s sacred temples, they were sacrificing their own children to Baal, they were making alliances and paying off other leaders in order to try to keep themselves safe. What is even more astounding is that a close reading of these years of kings and prophets reminds us that we are not so different than that old Israel.

God said, “Because of your great wickedness...you will be completely cut off.”

And thus begins, “Long lay the world in sin and error pining, UNTIL HE APPEARS!!!”

Yes, the long-awaited, long-hoped for MESSIAH. The only one who can make us, in our sinful, self-serving humanity, WORTHY of an inheritance in the kingdom of God.

So, this is how I came to feel a little emotional during worship. Then the bottom fell out of my tenuous control of my tears when we reached the closing song and it was a medley of “O Come, O Come, Emmanuel” and “Tremble”????!!!!

That’s it. I’m done. Are you kidding me? Can.not.stop.the.tears.

Because here’s where Israel was headed, and where we all are headed without God:

I saw the Lord standing beside the altar, and He said, 

“Smite the capitals so that the thresholds will shake, 

And break them on the heads of them all! 

Then I will slay the rest of them with the sword; 

They will not have a fugitive who will flee, 

Or a refugee who will escape. 

Amos 9: 1 NASB 

But here’s where the appearance of Jesus takes us:

O come, Thou Rod of Jesse, free 

Thine own from Satan's tyranny 

From depths of hell Thy people save 

And give them victory o'er the grave.

O come, O come, Emmanuel lyrics 

We were the enemy. We were “without an escape.” Until the Son of God appeared (O Come, O Come, Emmanuel). Til He appeared, and the soul felt its worth (O, Holy Night.).


Now THAT is reason to rejoice.

This Sunday Morning.

Pixabay Image

They struggled to put some socks on her feet, 

Their own hands cold, their own hearts weak, 

I knelt to help, not knowing how, 

But moved by the gesture I saw just now. 

In her face I glimpsed a familiar kind, 

Like a grandma from a long-past time, 

She wanted to talk, had stories to tell,

She was all alone and her health wasn't well.

I'm lost in her stories and wish I could stay,

How do I turn now and walk away?

Go back to my home where I'm fed and warm,

Praying for God to shield her from harm? 

Be with her, God, do not hide Your face...

For the Son of Man to rest had no place,

We wait on You, LORD, and know we will see,

A day for Your justice when we all fall for thee. 

The Word Woven into the Code

Evie interlining her Braille assignment.

Just last weekend I attended a breakout session at my church for volunteers to help re-fuel us and our "servant-hearts". During the break out session, I learned about the impact the translation of the Bible into English had on literacy rates. According to the Washington Times: 

...in a period of 100 years reading and writing English among males in England went from about 5 percent of the population to 25% eventually reaching 40% of the population. By 1770, shopkeepers were 95% literate. Literacy in England is directly attributable to the Bible. (Creason, Washington Times, 12/11/14).

My Oversized Poster of Strong Groupsigns

Scripture certainly does give us something worth reading, and at that time it may have been some of the ONLY stuff to read. Now we are bombarded with all kinds of leisure reading options, some worthy and others not...but the Bible, unfortunately finds itself all too often resting on a lonely shelf collecting dust and cobwebs.

Fast forward a few days to today, and my daughter and I working on her Braille lesson. She was brailling Psalm 27: 1-2 which is part of our scripture memorization. As she was doing this, she recognized that she was making mistakes and wanted to fix them. I told her to just keep going and that she could interline her work (print the translation above the brailled symbols) after she was finished, and then we would make corrections the next day.

While she was working on her Braille, I was also working on mine. I was using large paper to create giant posters with CONTRACTED Braille on them so we could continue learning where she left off last year. (She was in public school, but we started homeschooling just this fall). As I was preparing a poster and reading through the various contractions, I started to take note of some unique words that I had no IDEA would be a part of the contracted Braille code.

lord

spirit

world

rejoice

rejoicing

character

ought

knowledge

shall

thyself

Of all the words that could have been transferred into a shortened code in order to make Braille easier to read for its audience...these were worthy enough to be part of that pool.

These beautifully Biblical words were suddenly a part of our lesson plan. 

Evie's Braille assignment with interlining notes,
corrections she made, and new contractions for her to work on
as she continues to practice brailling Psalm 27: 1-2

I was flabbergasted...I was moved almost to a point of tears as I felt relief wash over me. One of the toughest parts of the decision to homeschool my daughter was knowing that we were not going to have access to Braille lessons in the district anymore and I would be responsible for continuing her Braille literacy. I didn't know quite where to begin-but something in my gut today said, "Tammie, just have her start with something she knows...her memory verses."

We will begin to learn those contractions because they will occur over and over again in the scripture that we will be proclaiming in thought, word, deed...and now in Braille. For sure, God's plan is always better than my plan, and His word is a light unto my path.

For the word of God is alive and active...

Hebrews 4:12 NIV

Mom, I Got This...

Evie and I before we left for the NOT Back to School Pool Party

I carefully read the sign...then I RE-read the sign.

Slide Rules: No lap sitting, even for small children. Single rider only.

SINGLE RIDER ONLY?

"Evie," I said, "We can't go down together. The sign says you have to go alone."

My heart sank. I knew she loved water slides...we spent so many fun days at Noah's Ark in Wisconsin Dells when we lived near there. But, I couldn't think of the last time she had been on a water slide where you don't have a raft around you, and I wasn't sure that she wouldn't panic and get an arm or leg caught inside the tube. All of the dangers of this came rushing to the front of my mind like a tragic news story on 20/20.

Jeff snapped this photo of us in the car before we left. 

Good Evening, I'm Barbara Walters and this is Hugh Downs. We begin tonight with a tragic story of a blind girl who broke several limbs when she was stuck in a waterslide in Northern Nevada. Her negligent mother spoke to us earlier today...

"So..." Evie began, "Yes, I want to go."

"You want to go on the waterslide?" I repeat after her to clarify her intention.

"Yes. I-I-I got this, Mom."

"Honey, I can't go down with you. Do you know how to cross your arms and slide down? You have to go feet first?"

My blood pressure begins to rise, I start to sweat and I hear a buzzing in my ears. Even scarier than her potential disappointment is, apparently to me, her desire to do this INDEPENDENTLY!

"Yes, mom," Evie says, "I can do this. O-o-n my own." Her regular stutter is incredibly subdued when she is being assertive with me...good for her!

I grab a life jacket off the wall and fasten the straps around her. She looks like my little girl going in the kiddie pool with her goggles and wet hair, and yet she isn't that little girl anymore. She's going to go on this big, gigantic, looping, swooping, water-rushing water slide all by herself.

I proceed to follow her up the stairs to where the lifeguards are loading the children (and some adults) into the watery SHOOTS OF DOOM (as they appear now in my mind).

Somehow the lifeguard now looks like Santa Claus in The Christmas Story when Ralphie is clutching the slide and desperately pleading for his Red Rider BB Gun...I picture the lifeguard's flip flop pushing on Evie's forehead to get her to release her grip and plunge to her liquidy fate.

I think of all the things I'll say to the lifeguard...she's blind, I need to be down there to catch her, so don't let her come down before you see me in the pool, you'll want to repeat the safety rules to her...

"Mom, leave, please...I-I got this."

I snap back from my terrifying train of thought. "What? You want me to go now? You don't want me to talk to the lifeguard?"

"No, go. Mom, I got this..."

Okay. I need to let go here. I know I need to, but it is so hard. This is where my fear and my faith collide.

"I'll be right down there when you come out of the slide. Okay? And if you change your mind, just come carefully down the stairs."

I head back down the stairs and head over to the pool where the water is rushing out and little bodies sporadically come shooting out of the tubes. I see Evie approach the lifeguard through a foggy window upstairs and she talks to him and in the blink of an eye she is one of the bodies that projectiles into the raging waters of the pool.

She did it! 

As she fights to stand up, she doesn't look too happy. She's almost stunned! I'm laughing and I say, "Honey, you did it! Wow, was that fun?"

She looks around and tries to gather herself and figure out where she is. Then she looks at me and says, "Oh! Oh! I did it! Yeah, that was fun! I'm going to go on the big one now!"

Evie proceeded to go on the bigger slide with me catching her at the end, and then she even went two more times WITHOUT me waiting for her in the pool. Just doing it all on her own. I even allowed myself to stay busy talking to another mom while watching for Evie out of the corner of my eye.

Who knew that the four sweetest words I would hear yesterday were, "Mom, I got this"?

My Prayer at the Beginning of 9th Grade

As I sit here tonight with Evie's last day of school tomorrow, I feel relief, I feel sadness, I feel excitement, I feel nervousness...

I turn in my prayer journal to August 3rd...a day when my fears for Evie's start of high school were overwhelming to me, and I reflect on how this prayer carried me through a challenging, rewarding, nerve-wracking and unexpected year.

Jehovah Nissi~the Lord is our Banner~this is my battle cry as we begin a new school year. 

Lord, I ask you to go before us as parents and prepare our way for an exciting, enlightening, safe and growing year. I pray that you place protection around our children from any dark earthly and un-earthly forces that may try to surround them. I pray that You cover them with the saving blood of the Lamb-that they will be confident as Your children.

Lord, I ask that Your Spirit makes me the kind of parent you want me to be: patient, slow to anger, present, faithful, tender. I pray that I will not be wasteful with my time-that I won't look for ways to escape stress other than prayer time with You-not facebook, instagram nor TV. You give me the truth. Everything else is worldly lies. 

As my "banner," Lord, I pray You guide me when battles arise concerning my child this year. I pray that I am gracious, fair, and that you give me the right words to confront those who may be my adversary at the time. Help me to remember that our earthly view is SCARCITY-but You give us life ABUNDANT, and the world cannot take that from us. I never have to fly off the handle in anger because of "not enough." 

Bless the teachers and students. Keep our schools healthy. Multiply the space in our schools to help them not feel so crowded. Multiply the resources of books, supplies, power, clear air, food, water...provide an abundance of these things that will help our children succeed, grow, and learn. 

Father God, You are the author of this school year and even before the first bell rings, I give You glory and praise. I knowYou are with us, and that You love us and You have commanded us to be unafraid, because we are Your children. Praise you, Jehovah Nissi. 

Amen

And tonight I add:

God, thank You for this school year...for how we've grown, for the people we've met, for the challenges we've faced and for how they have led us to a knew place~they have changed our trajectory, they have changed our hearts, and they have reminded us that we must press into You when we don't have enough strength to carry ourselves. We look forward to the summer ahead and our new journey with home school next fall. Amen. 

Many are the plans...

Many are the plans in a man's heart, 

but it is the Lord's purpose that prevails. 

Proverbs 19:21

We are definitely in a state of transition in my home. With the excitement of summer break approaching, the joy of launching into homeschooling next fall, and the few days that I have left to work this school year, I just feel like none of it can come fast enough.

But God continues to remind me that I need to stop looking so far ahead. There is treasure in TODAY. I may be feeling frustrated with the behaviors of students at school, or I may be anxious about Evie's finals, or I may be wishing that we already had her grades wrapped up and I could file our Notice of Intent to Homeschool paperwork...but God nudged me today in my quiet time with Him and reminded me that I have a bunch of plans in my heart...but He has plans of His own and His plan comes first. 

I cannot miss what He is doing TODAY just because I'm so excited about what our plans are for the next few months. 

I must not run ahead of Him or else I am choosing to run away from Him, because He stands here...right here, TODAY. 

Many are MY plans, Lord...but Your purpose prevails. Amen.

The Pile

A rare photo of my table completely cleared of its usual piles...except for the cat.

I can't shake it. It's always there. Every day, every week, every season of the year...

There's a pile on my dining room table.

The contents of the pile change periodically. But they always indicate a current "focus" of my life.

It might be a pile of Christmas cards with envelopes to address, or it might be the pile of thank-you cards that quickly follow behind.

I just emptied the table of the pile of tax forms only to be replaced by the highly anticipated "intent to homeschool" paperwork.

Sometimes the piles bring sadness, like when I have to fill out documents demonstrating our life with rare disease. But woven into those same sad piles are the jubilation of saying: "Oh my goodness, look how far we have come."

There are a multitude of random school supplies within the piles. Three-ring binders hold my Bible studies and prayer journals, post-it notes contain scribbles of assembly and senate bills that I am following, 3 or 5 subject notebooks with sections for blogging-for planning-for checklists, and pens and pencils that inevitably leap out of our junk drawer and make a home on the table...they represent the stock-piling of years of school supplies being purchased that we never really used because Evie's school supply list was different than the other kids.

I have to shift the piles to an alternate location when we have guests, and I usually re-evaluate my piling compulsion each time that happens. But, I've grown accustomed to it, and realize now that it's not a sign of incompetence or laziness-this is my filing system, this is how I get things done, this IS how I "do what I do."

Do YOU have piles in your life? Do they help you or hinder you? 

I Despise that Word...

Our girl DJing with Jeff on the K-Love Afternoon Show

***Be advised that this post contains spoilers for both the book and movie referenced within***

I was pleasantly surprised when my Washoe County Library suggested Flowers for Algernon (Daniel Keyes, 1958) for me on my Overdrive app. I thought it would be a "blast from the past." Originally, I read "the book" in an abridged version in 8th grade. I didn't realize it was abridged until I checked out the book 15 days ago and started reading it again for the first time since 1988.

I recalled the story as being similar to the movie Awakenings (1990), with Robert De Niro and Robin Williams. In both plots we find a man who has intellectual delays and is chosen for an experiment to increase his intelligence. I recalled both stories also resulted in success of the experiment for a brief time, but also coming to a tragic end as you watch the protagonist regress back into his original pre-experiment state.

Fast forward to my current life...I have a child with special needs which include blindness,  and intellectual delays. I have been through numerous trainings on self-determination and advocacy for those with disabilities. I am also keenly aware that there are some people in our lives...in our communities...in our world, who still believe those with a lower IQ are not actually human beings with thoughts, feelings, or rights.

Flowers for Algernon has given me the perfect narrative for why I despise the word "retarded" (I would love to from here on refer to it as "the R word" but I know I had to spell it out in order for those who read this to be on the same page with me.)

You see, people use the word ALL THE TIME to describe things that are weird, bad, messed up, or displeasing. It is NEVER used in a positive manner. NEVER. People also like to use it as a hybrid of words to accuse or lash out at others "f*@K-tard" or "beau-*@rd" are often references I see used on social media. Again, the word is being used to hurt, to assault, to harm. I was even disappointed when I read the book Wonder and saw that the protagonist in that story who had a physical deformity was concerned with convincing others that he wasn't "re*@#ded." He was hurt by being called THAT word and wanted to ensure that people knew he did NOT have an intellectual disability.

Not so long ago, a person like my beautiful daughter would have been put into an institution for being diagnosed as the "R" word. It was a CLINICAL diagnosis. It was a medical term. It was a condition which brought shame, fear, and the certainty of a life shut away from society. In Flowers for Algernon, as Charlie gains his intelligence and recalls memories from his childhood, he starts to realize that he was never actually seen as a human being. The doctors who helped "make him" claimed that he wasn't a human being until they made him so, until they increased his intelligence.

When Charlie realizes that he's regressing, and he begins to understand where this decline is leading, he asks to go to the institution where he will be placed once he no longer has his higher IQ. And this is what Charlie writes in his journal:

As I drove out of Warren, I didn't know what to think. The feeling of cold grayness was everywhere around me--a sense of resignation. There had been no talk of rehabilitation, of cure, of someday sending these people out into the world again. No one had spoken of hope. The feeling was of living death--or worse, of never having been fully alive and knowing. Souls withered from the beginning, and doomed to stare into the time and space of every day. (Keyes, 1958)

So, why do I despise the "R" word so much? 

Because the "R" word is a remnant of a time in our history when it was okay to send off those with intellectual disabilities to wither away in a facility so none of us had to watch.

I despise the "R" word because it is an unfortunate representation of our current life, when people who have disabilities are viewed as "less," as "flawed," as a mistake. Somehow, we still live in an age when we think it's justified and within OUR rights to end a pregnancy because we think the baby might be born with a disability. We still live in a time where we pick on the kids with special needs in school because we need SOMEONE to pick on, and they won't really understand that we are making fun of them anyway.

I despise the "R" word because, even when you say, "but I would never describe your daughter that way" you are still describing SOMETHING that way...and it's never a kind description, it's always a description of loathing.

I must admit, I haven't enjoyed this little stroll down memory lane the way I thought I was going to. It has been a painful read for me, and I understand now why we read the abridged version in 1988...but I don't think it was a "coincidence" that I had this book suggested to me at this time. I had some things I needed to say, and I guess this gave me a launchpad for doing so. 

Cracked

Temple-dwelling God,

Once so distant and remote,

CRACK! Now Holy Ghost.

Written in response to The Write Prompt