This week is something special.  On Sunday, August 3rd, I got an email re-instating my daughter’s open enrollment status to homeschool.

 

See, we had decided, between the diagnosis and the meds, to send our four youngest to school this year.  I cried during that meeting with the principal, a lovely, warm woman who showed much compassion.

I was broken and willing to make the best of a bad situation, to throw myself into the fray and try to cheerfully accept that my little girls, 6 and 7, would be going to school all day long this year.

I know there are many of you right now contemplating this same thing.  You’re burned out.  You’re frazzled.  You do SO much for your family and there is no short supply of crazy at your house.  I understand.

There have been days, in the past three years, where I have met my husband at the door, asking him to consider school.  I have been homeschooling seventeen years.  I don’t ever remember a time that I was “burned out” and no longer wanted to homeschool until shortly after William’s birth.  It was my first head-long run in with a spat of depression that sunk me like a stone.  This was followed by two rough miscarriages and my hormones were incredibly out of wack.  And I was no longer grateful.  Gratefulness is not a cure for mental health.  Some people think it is.  Mental health is a medical condition and should be treated as such.  Thankfully, what I now suspect was my first and last battle with postpartum depression, is in the past.  But I have to tell you, I still very much had the attitude that I was very ready to move past this stage of pouring myself into my kids and get onto what I wanted to do.

I enrolled in college (online) and decided I could homeschool and go to school.  And I did and I did so successfully.  I finished my Associates degree last year with a 3.9 adult GPA.  (I am not telling you what I had to drag in from age 18, lol.)  But, emotionally, I was withdrawing, eyes on “greener” pastures.

And then this.

This.

I got slapped in the head with Motor Neuron Disease as a diagnosis and it became very clear I was losing all of this.

As I type this I am kissing the tousled little blonde head of a sticky little boy in Cars underwear.  Potty training is NOT going well.  A nine year old is making her first attempt at crepes and the kitchen is going to be a disaster.  For the first time in 21 years of parenting I have Sharpie on my walls.  (The newly turned 3 year old is a creative little firecracker.) My house is a disaster.  My washing machine doesn’t know how to stop – it just rolls through spin and back to wash so you must constantly watch it.  This morning my coffee machine had to be rinsed with vinegar 5-6 times before it wanted to make my coffee.

Sometimes blogs give the illusion that life at THEIR house is so lovely, so serene.  And you sit down and look at your kids and your house and you feel like either you or them or BOTH are a failure at this homeschool and mom thing.

Life can be ugly.

It can hurt.  A lot.  It can be sad.  It can be illness, fatigue, chronic disease, terminal disease.

I cannot begin to say that homeschooling is right for every family.  But I can tell you that families are worth fighting for, worth pouring yourself out, worth living and dying for.

This morning I praise and thank my Lord for this gift…. The gift of one more day, one more week, one more school year to enjoy my precious (and precocious) little girls and teach them of Him and His glory.  And I will fail and I will  do it imperfectly, even ME with all my experience, and I will stumble.   But I will try and I will laugh and I will cover it a lot of it with love and all of it with prayer.  It is enough.

 

Have you ever heard a tale of an old miser who died in his little hovel and no one ever knew he was rich? I’ve heard this tale and a few years ago, a neighbor of my parents died in a rundown home (later demolished) and it was discovered he had a good chunk of land and money.  He had no family, no friends, and spent nothing.  He died and he couldn’t take it with him.

Right now you’re wondering why in the world I am writing this?  Let’s face it, for most of us in the midst of raising babies, the problem of too much money to spend is not ours.

I have parented through cultural swings.  Once strollers were popular, now carriers.  Homeschooling was on the outs, now it is gaining in popularity.  Fads, even in families and parenting,  swing.  Once it was popular to enroll children in every possible activity.  It is becoming increasingly more popular to stay home, do less, have unstructured time.  I love this trend.  I think families need to focus on families and grow strong, making the unit a priority.  However, I would strongly encourage balance.  And, moreover, some folks just use it as an excuse to just not do things.

My point?  Don’t hoard your energy and time.  Unlike money, if you store it up, you won’t have more.  Pour out your energy, your hard work, your time.  Don’t resent spending it on those you love.  No!  Lavish these things on your children, your husband, your neighbor.  Spend as much as you can afford.

Mindfully, there is balance.  We are called to care for our homes so that our family can enjoy their home time as well.  This is not a blessing to spend time gallivanting about while dishes sit in your sink.  No, this is not that.  It is a simple reminder to get out and do good things unto others.

On a personal note, this is quite the turnabout for me.  We were homebodies for much of the first half of our homeschooling career.  Perhaps that was best – right where I needed to be with oh so many littles!  But, as our oldest got older, I regretted that she did not have a circle of beloved friends to spend time with.  Those friendships are worth investing in – a Lego club, or a Trail Life group, a chess club, or an outdoor day.  My oldest son has a few close friends that make his life richer.  He prays for them, they pray for him, they play, they laugh, they talk.

This year, as I am facing my own unique set of hurdles, we allowed our fifteen year old to plan more things than ever… Mock trial, the play, science class, assistant teaching Spanish, choir.  I have been encouraged to save my energy, guard my time.  I do think there is value in this advice.  But as I think past more than this month, this year, I know these friendships nurtured, will sustain her and nourish her as a young adult.  They have great value.

I think, like money, we should spend our time and energy WISELY, but it is completely acceptable and worthwhile to spend it liberally on good things.  To more define “good” – to spend our time, energy, ministry, on those things that bring glory and honor to the Lord.  These friendships, these kids, they honor the Lord.  The choir sings praise to our King.  I have seen these kids earnestly pray together before Mock, and develop the ability to stand fast and speak boldly.

Personally, I am being encouraged by others to do less this year.  Chided, “Save your energy.”  For what?  If I save it will I have more later?  If I hoard my hours will they turn into days? Will the saved days turn into weeks?  Can I tack those onto the end of my life?

This morning as I struggled with the question of balance, choosing to do more when I could certainly do less, one of the children brought me bits of an eggshell.  Each year swallows visit our home, build a nest in our entry above our door, and raise a family.  This year the little couple are raising a second set of babies.  Today was hatching day for one of them.  As I looked at that shell, I wondered if Mama Swallow was mindful of how short her time would be with her nestlings?  Did she know in a mere three weeks her tiny babies would fly out of the nest on their own?

As humans, we get far longer than three weeks with our own children.  But spend that time mindfully.  It will not be long before they teeter at the edge of the nest, uncertain of their own wings, but stretching them in preparation of flying.

I am incredibly blessed in this disease.  It does serve well to force mindfulness.

I wake up in the morning and the very minute I get out of bed, I reach for the door by my bed to steady myself.  Good balance is something sorely missed early in the AM.  It’s a bit like being a landlubber on a rocking ship.   Straight away the leg is stiff and I am reminded that those first steps forward are going to be quite the chore.

In that moment, I am very much reminded of my own weaknesses.
2 Corinthians 12:8-9
“Three times I pleaded with the Lord to take it away from me.
  But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.”   It is not, wholly, that I would not wish this to be lifted from me.  I would.  However, His grace is made apparent in my weakness.

Lamentations 3:18-24
So I say, “My splendor is gone and all that I had hoped from the Lord.”
I remember my affliction and my wandering, the bitterness and the gall.
I well remember them, and my soul is downcast within me.
Yet this I call to mind and therefore have hope:
Because of the LORD’S great love we are not consumed, for his compassions never fail.
They are new every morning; great is your faithfulness.
I say to myself, “The Lord is my portion; therefore I will wait for him.”

It amazes me, truly amazes, how affliction inspires adoration.

 

Save time?  No.  Save energy? No.  I’ll save nothing.   I will pour out every ounce of my love, energy, and time into this family.

This year, 2017, has been quite the year.  I turned forty this year.  I got my diagnosis this year.  This year has been one big reality check.

We spent the last couple of weeks going back and forth between Iowa and Minnesota, Mayo, my Lyme doctor, and a couple emergency room visits.  I had my PICC line placed for my Lyme treatment and ended up with early pneumonia and a blood clot.  I’ve also begun my IV Lyme meds.  I’m going to outline the plan, in case it’s relevant to someone else.

The diagnosis: I have an official diagnosis from U of Iowa Neurology and Mayo Rochester of Primary Lateral Sclerosis which falls under Motor Neuron Disease.  Three (THREE!) EMGs have ruled out denervation on my right calf despite the appearance of slight atrophy.  Atrophy (the muscle breaking down and denervation beginning) would signal a change in my diagnosis from PLS to ALS (amyotrophic lateral sclerosis.) It is known that if Lyme spirochetes invade the brain and central nervous system that many of the symptoms between PLS/ALS and Lyme are the same.  The question in my case?  Did Lyme cause Motor Neuron Disease?  There is no good answer to this.  All of my PCR serology tests come back negative.  This is not unusual.  Even Mayo states that serology is not a reliable test for Lyme, especially in the central nervous system.  I *do* show a small quantity of Lyme antibodies in my cerebrospinal fluid.  However, it is not a sufficient quantity to consider the test positive.

Considering this and considering that I had a (medically confirmed) deer tick bite in 2008 that was not sufficiently treated, we are going forward with Lyme treatment.  Both of my neurologists (Iowa and Mayo) confirm, in my shoes, they also would pursue Lyme treatment.

My Lyme plan looks very different than many other people.  Folks with MND who want to pursue Lyme treatment may want to study the photographs of Dr. Alan McDonald, a retired pathologist, who has done much to record nematodes in the brain of dementia patients.  It is believed that the tick not only confers Lyme (or co-infections) but also nematodes.   I have been taking Albenzadole – 2 tablets twice per day for a week, followed by a week off, now 5 days on, then a week off, then 5 days on, etc., to complete four cycles to kill the nematodes throughout their life cycles.

My PICC line has been placed and I have begun Rocephin (ceftriaxone), azithromycin, and Daptomycin – daily for six weeks.  The daptomycin is a cyst buster.  The azithromycin is a replacement for doxycycline.  There are some studies out there that show MND patients hasten their course with doxy.  We will also be treating suspected co-infections (Babesia and Bartonella.)

I accept that this may not work.  My Lord and God has chosen to allow this into my life.  He who could have prevented this has chosen to allow it.  Surely, if my Lord is good, and I am certain that He is, then He can work all things for good.  I do not doubt this.  I have seen times in my life where a moment did not seem good, did not feel good, but it worked good in me and in my life, and later I was grateful the Lord allowed it.

If this is you, right now, whatever you are facing, I would suggest you listen to this message.  It is moving and it discusses a biblical perspective when your dreams die.

https://ncbc.church/online-message/605

It is an interesting world that we live in… This world that sends mothers a message that is sounds something like this:
“Mother, your little child is good and perfect just the way he is.  If you would accept his natural state of being then you will find that he will naturally lean towards good things and love what is good.”

I wish that this were true.  Mother, I will tell you something else entirely.

Your beautiful child, made in the very image of his creator, is a gift from our Heavenly Father.  He is bright, intelligent, joyful.  He is also fully human, and, as such, capable of hate, selfishness, vanity, and self indulgence.

Children are not just part of the natural world, but also born of man with a very human nature.  I delight in my children.  They give me much joy.  I find they are intrisically creative and their intelligence astounds me.  I think we do children an incredible disservice when we patronize them and treat them as something less because of their youth.  Do not indulge a child’s human nature.

“Train up a child in the way he should go,
And when he is old he will not depart from it.”

 

The world would tell you, Christian mama, that teaching and training your child is one side of a coin.  Joy in your child is an altogether different side.  No! It *is* one and the same to train a child in goodness and find joy in the delight of raising them.

gator

We were waiting to see the alligator at the library yesterday!

It is an interesting thing to be diagnosed with a disease that you well know could shorten your life span and keep you from raising your children to adulthood.

I have been officially diagnosed with Motor Neuron Disease, probably Primary Lateral Sclerosis, from the University of Iowa.  I was seen at Mayo in Rochester last week.  They are still running tests but they also concur with the diagnosis for the time being.  Approximately 9 in 10 PLS patients will eventually develop ALS – Amyotrophic Lateral Sclerosi, a.k.a., Lou Gehrig’s disease.  That disease has a mortality of 100%.

And so the single thought I’ve had running through my mind for months is: How do I equip my children for life past childhood?

There’s that word again: equip.  It’s one the Lord has laid on my heart – not as a heavy burden, not something to be anxious over, but as one assigns a duty to be done, a goal to work towards earnestly and with passion.

It seems a little thing to indulge a child’s weakness until you can clearly see the bigger picture.  I am grateful for the clarity of purpose, to love, to teach, to find joy in and with these little ones for as long as I am given.

It is an amazing thing, watching your child mother.

OliviaGarth

This is our daughter Olivia holding our new grandson – aunt and nephew.
I am loving this new stage of my life, watching my adult daughter be a mama, love on our grandson, and dream of future grandchildren.

It makes me think of my own grandmother often.  She played an important part in my life.  She was Chief Encourager.  While grandparents must, by necessity, sometimes be the disciplinarian, their greatest gift to their grandchildren is that of encouragement.  Mommies and daddies are very busy doing day to day things.  Grandparents can focus on smiling at them, loving them, praying for them, enjoying them.

I’ve often said that everyone needs someone to be their biggest fan.  I have a child who has special struggles.  My own dad is that child’s biggest fan and that child blossoms under his care and instruction.  Truly, generations participating in the care, love, and instruction of a child is becoming a rare thing.  Our generation can do so much to impact the babies being born to our own children.  Never neglect that duty.

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.