Has there ever been such a popular idea as “Me Time” I wonder?  I bought into it hook, line, sinker.  I wanted “Me Time” to recharge.  I wanted “Me Time” to work on continuing my education.  I wanted “Me Time” to listen to a popular podcast.

You know, there isn’t anything inherently evil about the idea of a little alone time.  I remember the part in scriptures where Christ withdrew from the crowds of people.

When Christ learned of John’s death, the Scriptures tell us that he withdrew to a solitary place and yet the crowds followed him, wanting him to heal, to speak, to tend to their needs.
Matthew 13-21 ~ When Jesus heard what had happened, he withdrew by boat privately to a solitary place. Hearing of this, the crowds followed him on foot from the towns. When Jesus landed and saw a large crowd, he had compassion on them and healed their sick.  As evening approached, the disciples came to him and said, “This is a remote place, and it’s already getting late. Send the crowds away, so they can go to the villages and buy themselves some food.”
Jesus replied, “They do not need to go away. You give them something to eat.”
“We have here only five loaves of bread and two fish,” they answered.
“Bring them here to me,” he said. And he directed the people to sit down on the grass. Taking the five loaves and the two fish and looking up to heaven, he gave thanks and broke the loaves. Then he gave them to the disciples, and the disciples gave them to the people. They all ate and were satisfied, and the disciples picked up twelve basketfuls of broken pieces that were left over. The number of those who ate was about five thousand men, besides women and children.

And so Christ, putting himself aside and that time he had wanted to be alone, served those around him out of compassion.  He then again withdrew –

Matthew 14:22 -Immediately Jesus made the disciples get into the boat and go on ahead of him to the other side, while he dismissed the crowd. After he had dismissed them, he went up on a mountainside by himself to pray. Later that night, he was there alone, and the boat was already a considerable distance from land, buffeted by the waves because the wind was against it.

In this passage it is not “me time” that Christ was seeking.  It was time with the Father.  He was seeking comfort, perhaps guidance, but his time was not self-fulfilling, but time spent with the Father.  We see again, in the garden of Gethsemane, Christ seeking time alone with the Father.

If Christ is our example, what does that mean to us?  It is obvious, as mamas, that there is always a crowd of little ones and sometimes big, seeking from us guidance, a need to be spoken to, healed, nurtured.  And it is taxing, especially when we are dealing with our own concerns, our own worries, our own needs.  And yet, we see Christ, deeply sorrowed over the loss of a beloved friend and later over his own impending death, spending time praying to the Lord and pouring out compassion to others.

Is he not the perfect example of what is needed and what is to be done?

I cannot help but go back to Mary and Martha.  I am a Martha through and through.  But let’s look at that passage:
Luke 10:39-42

She had a sister called Mary, who sat at the Lord’s feet listening to what he said. But Martha was distracted by all the preparations that had to be made. She came to him and asked, “Lord, don’t you care that my sister has left me to do the work by myself? Tell her to help me!”

 “Martha, Martha,” the Lord answered, “you are worried and upset about many things, but few things are needed—or indeed only one. Mary has chosen what is better, and it will not be taken away from her.”

I know how much work you pour into your children and how much work you pour into your home.  I *know* this.  As the mother of eleven children, and nine of them in twelve years, I know that when you sit, the laundry sits.  When you sit, the dishes sit.  When you sit, the children keep moving.  😀  I know these things.  I also know, from my own experiences, that unless you want to burn out, it is NEEDFUL that you sit at the feet of God and refresh yourself from the scriptures and pray.  I have been there, I have done that, and it is not a place I wish to revisit.

I also know that selfishness breeds selfishness.  When you indulge sin, it begets more sin.  Have you ever noticed that “Me Time” leaves you hungry for more? Or that you feel out of sorts or discontent when you come back, longing for the next time you can get away for some more me time?

Martha needed to stop.  She needed to sit.  She needed the Word of God.  She needed to pray.

There was time for dinner, time for dishes, time for cleaning up… Trust me, those dishes weren’t going anywhere.

I have often said the doing needs done.  And it does.  But who are we to believe that the 24 ours in a day that God gives us is insufficient for what He wants accomplished in our homes, our lives?

 

It’s been three months since I last wrote a post.  That second EMG went well.  It did not show denervation.  A muscle on my calf appears as though it is atrophying but no denervation and thus, I have avoided the ALS diagnosis.

The University has recently given me the diagnosis of Motor Neuron Disease / probable Primary Lateral Sclerosis and the “clock” has begun.  90% of PLS patients will develop Amyotrophic Lateral Sclerosis, ALS, Lou Gehrig Disease.

Because of the small amount of Lyme antibodies in my spinal fluid, we also chose to travel to Minnesota to see a Lyme “literate” MD and be tested with the full Western Blot for Lyme.  Coincidentally or not, I did test positive for Lyme in four bands as well as one Indeterminant.  If the indeterminant band had been positive I would have been CDC positive.  I had a tick bite around the summer of 2008 which was insufficiently treated with doxy.

All across this wide web, there are whispers and sometimes shouts of Lyme “induced” motor neuron disease.  Is it real or supposition or the hopeful dreaming of patients who have no real hope in ALS and seek something else?  I have no idea. I’m not especially learned, not especially wise, and not especially gifted in these areas.  But this I know…. Try we shall.

We’ve had many ask so what do you have?  ALS?  PLS?  Something else?  Lyme?  Truth is we don’t really know and this is the best we can explain:

I have been diagnosed by the U of Iowa as having Motor Neuron Disease.

It is really less of a “disease” than a catch-all of symptoms –  Motor Neuron Disease comes in two flavors – either you have Primary Lateral Sclerosis OR you have Amyotrophic Lateral Sclerosis.

The difference:

PLS – means your UPPER motor neurons are degenerating. We absolutely know, with no doubt, that my UPPER motor neurons are beginning to die. There was never any question of this.

ALS – is different in that your UPPER AND LOWER motor neurons die off. We will know if I have LOWER motor neurons dying when my nerves begin to die and muscles atrophy in my leg (and eventually both legs, both arms, chest, etc.) IF that happens then they will change the diagnosis to ALS.

What now?

Well, when you have UPPER motor neuron failure but NOT lower motor neuron failure they give you a temporary diagnosis of PLS. This is what I have right now. They know that most patients (90%) will develop LOWER motor neuron failure but there are those that stay with just UPPER motor neuron failure. Those that just keep upper motor neuron involvement get a permanent diagnosis of PLS. Those that become both upper AND lower involved get the new diagnosis of ALS.

What about the Lyme?
Okay, so the confusion here is that we think this is Lyme.
We KNOW U of Iowa is correct. I have PLS. BUT we also know that many doctors across the country believe that there is a CAUSE for PLS/ALS – it is not random. Some people get it more than others – usually you are over 50/60, men get it more than women, and military people get the most of all.

There are a lot of theories. Vaccines take a big chunk of blame. Mercury in fillings take another chunk of blame. It is the idea that some people are more sensitive to toxins and thus as they absorb heavy metals from vaccines & amalgam fillings, their motor neurons weaken and die.

And then there are those who believe that Lyme causes SOME ALS/PLS.

These doctors are gaining more and more support.

So if it is Lyme, it is curable right?
Lyme is VERY curable….  – In the EARLY stages. You let those nasty little Lyme bacteria grow and get stronger and they will try to kill you. Lyme is a bacteria, an especially bad one – a spiral shaped monster called a spirochete.

As they reproduce and get stronger they choose an area to attack. For some it is the heart. For some it is joints. It seems more rarely, the little beasts chooses the brain. This is my case IF this is what caused my PLS and it is hard to cure because antibiotics have a challenging time crossing the blood/brain barrier and killing all of the spirochetes.  There are also researchers who believe that the tick transmitted a nematode at the time of the bite and that the nematodes harbor the Lyme, protecting it from antibiotics.

Yes, I know a dozen people who have Lyme and have been cured. I’m happy for them. Unfortunately, I know absolutely NO ONE who has neuro Lyme and I know no one who has had MND and Lyme and been cured. So this is a shot in the dark. Even my Lyme doctor in Minnesota has never had a Motor Neuron Lyme patient.

We are very nervous because what she has ordered for me could make me far worse. Or it could help – a lot. By far worse we do mean death. So it isn’t just a matter of, “Geez Kelly, take the antibiotics. There are patients who took these antibiotics for Lyme (ceftriaxone) and it did kill them and/or accelerated the Motor Neuron Disease.

So please know, that while we are making these choices, we take none of them lightly and we are weighing all of options. It might look like we are doing nothing. That is not the case.

It might look like we should do something else. Please know that we are doing the best we can with the situation we have been given.

The drugs they want to give me are $850 EACH DAY. Blessedly, my insurance is going to pick up a good chunk….. For a short while. But, after that , they will stop. There is no “approved” drug treatment for neuro Lyme so they are under zero obligation to pay for it. And unless someone knows of a half million job for the hubby, we are making the best decisions we can under these circumstances.

I FIRMLY beleive that God has His eyes wide open. He did not turn away for five minutes or blink while I got this disease. I absolutely know that He chooses to ALLOW us to go through trials for His own glory. This is supported in scriptures, that His believers will go through trials and tribulations and that these will change and mold those people to be more like Him.

I am requesting prayer.

Specificially:

Courage. We are forbidden by God to be anxious. We are to turn everything over to Him in prayer and thanksgiving.

No Bitterness – this is really hard for us.

The best case scenario for me currently, according to the University, is long term paralyzation. We hope this is just PLS and that it will take the next twenty years for me to be fully paralyzed. Or, that Lyme treatment can stop this.  Right now I am gardening, playing, spending time outside, doing projects.  I have people saying things like, “I’m so glad you feel better,” and “Wow! Maybe the doctors are wrong.  You’re doing great.”  Ya’all, I never felt BAD. 😉  I feel like ME – okay, maybe a slightly weaker version of me, a little unbalanced version of me, but still me.  And I surely am not going to sit on my tailfeathers and get weaker by lack of use.  Plus?  Plus if I know this is my last year to garden, or my last year to play with my kids, or my last year to………..  Why would I choose to sit on my couch and fuss?  Nope.  No.

Obviously we would love for me to be fully healed, God willing. But we also have to talk to the kids on their level about Mama being sick and make a lot of hard decisions. No one feels this more than my husband, myself, and these precious kids. Pray for all of us please.

Mothering is so…. hard.  It is so incredibly hard.  You lay everything out there, you keep nothing, you pour it all out.  Sometimes you leave so little for yourself that you run out of gas.

I don’t know what God instilled in mothers to give them the instinct to love so deeply.  I am not a natural nurturer…. Maybe that is why I latched onto the word so long ago?  I found the word “nurture” on a FB for sale webpage one day and had to have it.  It is the single word that I have striven for since I became a mommy.

But there have been days, weeks, months, when the gas tank was on empty and I didn’t love mothering.  I think that should be said.  Sometimes as mamas we think that we should find nurturing natural.  Or maybe that we should like to pour every ounce of ourselves into our children?  It isn’t natural.  If I confess Christ and I believe the Bible as Truth then I believe that the natural state of man is a sin nature, selfishness at the core.

And I know I’ve felt it before.  Not on those, “Mama, I don’t feel good,” nights when the preschooler comes in with sleepy eyes and tousled hair and needs, desperately, to be held, tucked into your own bed, and their tummy rubbed so that they can get back to sleep.  But definitely on the mornings where I haven’t yet had coffee and I just want to finish reading a post or sending an email! 😉

I need this to be said, to be written.  Long ago a book was written: What is a Family?

But I ask you: What is a Mama?

This needs to be written.   We live in a culture where women can, and do, almost anything.  This past year I was wife, mama, worker, student, homeschooler.  It was many plates to keep spinning and I think I did well.

 

Then.

Then yesterday came.
I have been sick.  Not “real” sick in that I felt bad, but sick in that something wasn’t right.  I began to drag a foot.  Not such a big deal.  I had had a car  accident back around 1997 and the dashboard came back and bit that leg.  I thought certainly this old nerve damage come to haunt my present.  After all, last summer, a summer in which I hauled dirt, built up our foundation, gardened, mowed with a push lawnmower, helped carry sheets upon sheets of drywall, and dug out my entire flower bed and replanted perennials until my heart sung with happiness.  I love being busy.  I love being active.  I love being outside.  I was in the best physical condition of my entire 39 years.

My first neurologist thought nerve damage or, maybe MS?  But four MRIs cleared the MS.  A perfect EMG cleared the nerve damage.  The EMG, lol, was an eye popping experience.  Not exactly painful, but not something I’d readily sign up for again.

She told me, “I understand you *feel* like you are dragging a foot, but I find nothing wrong.”  I felt dismissed.  I felt silly.  Maybe it had bothered me for a week and I just got used to walking like that?

But then…..  But then my leg started to twitch.  I called the office.   I asked the question, “Could the EMG cause my leg to twitch?” Their reply, “No.”  Just no.  Not just no.  Absolutely NOT just no.  I asked for the referral to the University.  They gave it.  Probably they thought I was silly.

I *felt* silly.  I felt paranoid.  I had that first visit in early/mid January and felt so good.  The doctor, old, comforting, warm, told me he thought my MRI wasn’t exactly right.  He suspected Multiple Sclerosis too.  He found a few concerning things.  My reflexes were “very brisk.”  I had clonus in one foot.  But, overall, I just looked good. He wanted to confirm the MS with a lumbar puncture.  I wasn’t scared – hello, um, twelve babies? 😉 I also asked for a Lyme test of the CSF.

No MS indications.  None.
A tiny amount of Lyme antibodies that they tell me is still negative. Figure that one out.

The next week? This wonderful man retired.  And I, non emergency, got shoved to another doctor’s new incoming patient lists.  November was my next appointment.

In the meantime? My balance is a little wonky.  My twitching? Now in the left leg, the abdomen, the right arm.  It’s February.  The morning of my nephew’s birthday party I noticed something strange about my leg.  The calf of the left leg was rounded, full.  The upper calf of the right leg?  Flat.  The difference was so slight I thought maybe I was imagining it.  I kept it to myself, quiet, until my husband noticed his loud, noisy wife was being hushed.  So I had him look.  And he saw it.

And he saw it.

Until that moment, no one else could see my symptoms.  I had convinced myself that maybe it was in my head. I repeated the first neurologists words so many times, “I understand you *feel* like you are dragging your foot….”

And he saw it.

😦

I called the University scheduling.  They couldn’t do anything.  I was a “new” patient and non-emergency.  The next week, in Iowa City anyway, I “dropped by” the office.  I don’t think you’re supposed to do that, lol.  I dropped by and asked if a nurse could take a peek at my leg.  I didn’t want to seem like a nutjob so I brushed away the fear, “I’m sure I’m imagining this, but…….”  I have dismissed myself, my thoughts, my fears.  It isn’t selflessness.  It is that the medical community is so dismissive of us, that we feel as though we are a bother, or stupid, or somehow that our concerns are not legitimate.  I am so strong, so insistent, so vibrant when dealing with my kids’ medical concerns and so dismissive of my own.

The nurse saw it.

She called in the doctor.  The doctor saw it.  And I had a sinking feeling.
He was out next week, he explained, but could I come in the next Monday morning?  So I did.  And that was yesterday, March 13th, 2017.

And that was the first day we were told that ALS is now on the table.
I am forty years old.  I am the wife to one and the mother to eleven.

I will be damned if this will become a blog about ALS.  Or that I will let it become a blog about a slow demise into a pit of despair.

The original intent of this blog is:
To EQUIP  and INSPIRE hearts and minds of children for the GLORY of CHRIST.

And so I will carry on.  The second EMG is on Monday.  We expect it will be less than stellar.  But, in the meantime, I will love my children.  I will equip them.  I will inspire them.

I have clarity of thought on this day that I have lacked for some time.  My purpose in this life was to give them life and to pour mine into theirs.  It is not lacking.  It is my contribution to this world.  They are so beautiful, so amazing.

I have told people that I am the most blessed woman they will ever meet.
It’s true. I am.

I have been searching for the perfect curriculum since….

(Drum roll please.)

Since 2000.  A friend showed me her curriculum (Konos) when my pretty little daughter was four.

bripiano

We began homeschooling in 2001 with much fanfare and enthusiasm.  I had found Susan Wise Bauer and The Well Trained Mind and I was on FIRE!

Throughout the years, I loved and used Sonlight, Tapestry, My Fathers World, and an eclectic hodge podge pulled from catalogs, recommendations, book lists, Ambleside, and TWTM.

I compared, listed pros and cons, sold curriculum, bought *more* curriculum, and was absolutely bent on using the best curriculum I could find.

It has been seventeen years since I perused my first curriculum and that pretty litte girl has graduated our homeschool.  Goodness, that pretty little girl has almost graduated from college!

brisenior

So, seventeen years and what would I do differently and what would I do the same?

I think the differences in who I was as a mama then and who I am now reflects my homeschool choices.   Morning Basket mama, Pam Barnhill, talks about Truth, Beauty, and Goodness, and these characteristics resonate with my soul.

Oddly, often, when mamas talk about these three characteristics, textbooks are shunned.  Speaking as a mama who has a one room schoolhouse going on in her home every morning, I felt that way too.  Originally, following TWTM, I began with Rod & Staff as spines.  Strangely, seventeen years into the journey, I am using Rod & Staff again as my backbone every day.

Am I advocating everyone jump to Rod & Staff?  LOL!  No!  I am saying that if something works well with your family, you have permission to use it.  I found flaws in each curriculum I was using…. A never ending thirst.  Now, older, wiser, more experienced, I am looking beyond the curriculum to the heart of the creators…. I am so grateful to John Holtzmann, to Marcia Somerville, Marie Hazell, Charlotte Mason.  I think it is so important to think about who they are/were and why they devoted their lives to the education of children and their end goals.

Each of these authored and compiled curriculum in the quest to equip and inspire the hearts and minds of children for the glory and goodness of Christ.

Pay special attention to that – each of these people had a goal.  What is that goal?

To EQUIP  and INSPIRE hearts and minds of children for the GLORY of CHRIST.

There is no perfect curriculum but I will confess I believe, firmly, there is one perfect goal.
I want to equip and inspire my children to the glory of the Lord Jesus Christ.

It is acceptable for me to use real, living, beautiful books AND textbooks.  It is okay for me to use narration, copywork, or a workbook or two.   I have found that textbooks give me time and permission to get the basics done and then move onto real books, handiwork, or just plain free time to be spent together or alone as individuals.

Ask yourself, on your quest, does this equip and inspire my child so that he is better equipped, wholeheartedly inspired, and growing in Christ?  If it does?  Good curriculum.

We had DS’ senior pictures done last month.  How is it that I see this:

cjlittle

But what really is now is this:

dsc_1424-2-kp

Mamas, I know all the old-timers say it, so maybe that makes me an old-timer. 😉

Heed these words: they grow up SO fast.
Love them, nurture them, inspire them, equip them.

If there was one thing I could share with people, it is the necessity to remediate dyslexia.

Dyslexia is an inherited brain type.  This means, most of the time, either mom or dad has been coping and overcoming dyslexia themselves.  Often a parent will say, once they realize they had dyslexia themselves, “I struggled.  I overcame.”  It is true that dyslexics are AMAZING when it comes to compensation.  Their ability to compensate often creates a hard worker, a bright individual who can think outside the box.

That said, why would you send your child out into the world with handcuffs?

Dyslexia remediation lets your child succeed with their amazing brain while giving them the tools they need to truly succeed!

There is much research being done on the concept of neuroplasticity.  The idea that the brain is moldable gives light to the belief that, if remediated, the brain can be trained to read more efficiently and more automatically.  One of the most necessary skills a child will learn in this life is the ability to read.  To be able to read AND comprehend efficiently is a gift.  We owe it to our children to equip them with this ability.  Science has proven that the younger a child is when remediated, the more likely the brain is to adapt.

If you are sitting and wondering (for the 1000th time) if your child has a learning disability and if your child could have dyslexia, can I beg you to get assessed?

There is a huge breath of relief that comes from knowing the hurdle you face.  And once you know your battle, you can stand and face it.  The more you know, the more equipped you are for this battle.  And a battle it is indeed!  However, your child’s dyslexic brain makes them unique, gifted, amazing.  I believe the dyslexic brain is a creation of God, intentional, purposeful, and a gift.  It comes with a challenge – learning to decode, comprehend, and encode the written language.  However, once equipped with the tools to face the challenge, you will find your child winning this battle!

And so it was a full year before we decided to make that appointment to have our son diagnosed.  The two boys presented very differently and because I still wasn’t totally on board with the idea of dyslexia, despite how much I had researched at this point, we chose to make appointments with two separate, reputable professionals.  One was Kelly Arnold of the Northwest Dyslexia Center and the other was Cynthia Arnold,  a wonderful neuropsychologist just outside of Portland, Oregon.

Guess what?  They’re both dyslexic – one moderately and one profound.  The moderate dyslexic READS.  It is a myth that they will not.  As a matter of fact, when tested he read above a 12th grade level – the highest level available for the given test.  But, upon further testing of reading nonsense words, we found he actually could only decode at a 4th grade level.  He was reading purely from memory.

So I asked her, “What’s the harm?  If he reads at this level then what is the point of remediation?”  She explained to me the brain is very much like a computer.  Let’s say your computer is running a huge program.  It bogs down.  It isn’t running optimally, efficiently.  So, while your child finally catches up “reading” around 3rd or 4th grade most often and does generally well through middle school, you’ll find that he will hit a wall again in high school.  Why?  Well, when that brain is running that giant DECODING program with new vocabulary (for example, in Biology) then another program that runs in the background is bogged down. That program is COMPREHENSION.

These kids CAN read.  But when you ask them, “What did you read?” Often they either can’t tell you or they don’t pull as much information as they should have.  In schools you’ll hear from their teacher, “He reads well, but his comprehension isn’t where it should be.”  Ya’all this is textbook.

Let me stop here for a moment and explain something the way it was explained to me.  The dyslexic brain is THE brain to have.  It is the brain of military giants, political leaders, gifted scientists, inventors, mathemeticians, astronomers.  Before the existence of the printing press, these were the people who ruled the world.  They are often highly gifted.  As a matter of fact there are people who believe, reading aside, you could “diagnose” dyslexics based solely from their unique gifts.  I absolutely agree.

My oldest son is past his hurdle of learning to read.  It no longer stymies his academic prowess.  He is intellectually gifted.  It is pure joy to see him succeed now, as a junior in high school.  He has all the gifts that accompany that beautiful dyslexic brain and the reading challenges no longer hold him back.

I cannot encourage you enough – remediate the reading skills.  Don’t let a child question whether he is bright or not based on his reading ability.  Do not allow that to be the measure of him.  Most people who are dyslexic have elementary stories – tales of being in a separate “slow” reading group, being held back in school, being called upon to read aloud much to their shame and consternation.   As a matter of fact, science is currently estimating 50% of prison inmates are dyslexic.  How much did their early academic experience scar their outlook of themselves?

We CAN fix this.  Please join  your state’s Decoding Dyslexia page on Facebook so that you are aware of the legislation going through your state’s House of Representatives and Senate.  Be active.  Be an advocate for your child.