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 

Hark! My Christmas Letter

Photo Courtesy of Sarah Whelchel

By now our family Christmas cards are reaching their addressed destinations, and, for another year I found myself unable to write a Christmas letter that sat well enough in my heart to be included.

What did I write about before?
Why can't I bring myself to write something which sums up our year and shares our lives?
How can someone who has so much to say (LOL) find no way to say it?

In recent years, when I try to compose such a letter, the words feel trite, or boastful, or redundant. So, I just stopped sending letters, and resolved to send a photo card with a Christmas greeting in hopes that it would be enough.

But today, I found myself filled with a message that I needed to share. The message started with a few lines in a very well known Christmas Carol, "Hark!" the Herald Angels Sing:

Mild he lays his glory by,
Born that man no more may die:
Born to raise the sons of earth,
Born to give them second birth.
Hark! the herald angels sing,
"Glory to the new-born King !"

In the form of an infant...helpless...exposed; the God of our Creation laid aside His due glory and came to earth. 

He came so that He could die...so that WE no longer would have to suffer that same type of death...

He came for US, the sons of earth...He, the one true GOD, came so that we may be born again in his SPIRIT. 

He came so that we could be free from our bondage to sin over and over an over again...He came so we could be made holy and have a close, personal relationship with Him. 

Hark! Listen! PAY ATTENTION!     

YOU  DO   NOT WANT TO MISS THIS.

In the Old Testament, God resided in one place...the Holy of Holies ... and ONLY the most High Priest could even approach Him! But NOW...because of Christmas, because of Easter...because of BIRTH, DEATH, RESURRECTION and ASCENSION... we have GOD with us every minute of every day...COMPLETELY accessible as a HOLY GHOST. 

AMAZING...He is always with us.

SCARY...He is always with us. 

OVERWHELMING...He is always with us. 

So, THIS is my Christmas letter...because what WE did this year is nothing compared to what HE did this year.

Oh, how He loves us.

Merry Christmas!!! 

Set the Table

I rise to another day,
I set my sights on you,
Their voices try to shout me down,
Try to break me through and through.

My mission here before me,
I set my sights on you,
Their words fly as hurled spears,
And they pierce me through and through.

My day leads me into war,
I set my sights on you,
Their taunts are vicious stones,
And meant to leave me black and blue.

A new day and another room,
I set my sights on you,
A table set by you for me,
In the presence of foes so true.

So Much More To Her

She is music,
She is belly-laughs,
She is group-hugs at bedtime...

"Let us pray..."
"Can we chat?"
and "Talking about that..."

She dances through sadness,
Through anger and fear,
She cries when she thinks
that no one is near...

She is too much food in her mouth at one time.
She is skipping the heavy parts on Full House at night.

She is Peppa Pig,
She is Olivia,
She is iCarly and Victorious.

She is so much more than we could ever know,
What her Creator stored up within secret troves.

Goggles

I am ever so grateful for the Wisconsin Center for the Blind and Visually Impaired (WCBVI), and for the Pre-school-6 Year conference that they put together annually here in Wisconsin.  Over the years, I think we attended four conferences and enjoyed each of them and gained something new every time.

I specifically remember one presentation that my husband and I attended in which we were given a pair of goggles to wear that simulated a vision impairment close to that of our daughter's.  It wasn't the perfect simulation of her vision, but it had a couple of key things:

• A hemorrhage in one eye, which our daughter did not have, but the hemorrhage occluded the vision from that eye, and our daughter can't see with her left eye

• 20/200 vision in the other eye 

Seeing things "the way" she sees them was startling enough, but the session director then had us attempt to complete various tasks.  If I recall correctly, I was supposed to put together a cabin out of Linkin' Logs.  I recall having to turn my head so I could use just my right eye to read the directions and find the pieces, because only the right eye was "working".  I found it incredibly difficult to adapt, and I started to get a headache because my right eye was working so much harder than my left eye.  I grew frustrated and tired.

My husband also participated in this same session only it was the hour after me, so we didn't have a chance to debrief before he went into the room.  He wore a pair of simulation goggles and completed a task as well.  He recounts a thought-provoking experience that he had while performing his task.  My husband was concentrating on what he was supposed to be doing, when suddenly someone came up behind him, without warning, and wiped his nose with a tissue.  Wow!  Brilliant!  How many of us would do that to our children without thinking about how alarming that would be? 

I realized, after that particular WCBVI conference, that it's important for me to try to see the world through my daughter's eyes.  When she's tired or frustrated, or when a task is more difficult for her than I think it should be, I remember my experience with the goggles I wore that day; the goggles that gave me a whole new perspective, and a healthy respect for everything my daughter DOES accomplish without grumbling or complaining.

You can check out the various low-vision simulation goggles at places like http://www.lowvisionsimulators.com/, or look at some of the vision simulation activities at http://www.perkins.org/resources/scout/vision-and-blindness/simulation-of-vision.html.  

Don't we all wear our own pair of goggles everyday?  We never really see every situation the same way that others see it, because we have our own individual interpretations based on our life experiences. Maybe Tennessee Williams said it best:

Nobody sees anybody truly but all through the flaws of their own egos. That is the way we all see ...each other in life. Vanity, fear, desire, competition-- all such distortions within our own egos-- condition our vision of those in relation to us... That's how it is in all living relationships except when there is that rare case of two people who love intensely enough to burn through all those layers of opacity and see each others' naked hearts. (accessed 2/13/14 at http://www.goodreads.com/quotes/290058-nobody-sees-anybody-truly-but-all-through-the-flaws-of)

Are You Still Watching?

We don't have cable television nor do we have Direct TV...satellite, any of that...We just have a monthly subscription to Netflix and we love it!

There are no commercials with which to contend, and I can watch whatever I want whenever I want it! I also love that Netflix will stop after it's shown you three straight episodes of a show and will say, "Are you still watching?" You have the option to hit CONTINUE or go back to the menu.

Clearly, their belief is, "We'll make this convenient in that we'll start three episodes in a row without making you do any work...BUT, we also know that you don't want to fall asleep and then miss an entire season of a TV show, so we'll stop at three and make YOU decide if you're ready to go on.

I wonder what life would be like if God would stop progressing our LIVES whenever we tuned out on him.

I think I would still be 10 years old.

How OFTEN do we fall asleep and STOP WATCHING God?.

How OFTEN do we have God running in the background while we're doing other things, and suddenly we are three episodes in and have missed the story?

We have so many distractions in our lives these days: social media, sports, games, family...all of them CAN be good, but all of them can become idols that pull us away from God and take a position of utmost importance in our daily lives. 

ARE WE STILL WATCHING GOD?

Here's the irony in my writing, and COMPLETING this particular blog post...it's been sitting in my drafts folder for three years. THREE YEARS it took me to finish something that I had thought about writing. I'm a little surprised that when I logged into Blogger, there wasn't a pop-up window that would say: ARE YOU STILL WRITING?


Written in response to The Write Prompts