In the Hard

Sunday was hard.

There is hard – I couldn’t find my keys, I was late to work, the kids are bickering…

And there is hard – I’m tired, I don’t want this for my life, I am drowning. Sunday was that kind of hard.

I hadn’t written for two years on the blog. I had inwardly vowed the blog, my life, would not become about ALS. It was a ludicrous promise that couldn’t be kept. In the gap I wrote, writing the means of catharsis, a working through of my diagnosis.

I belong to two ALS support groups on Facebook and while I gain much knowledge from them, the price is steep. I despise dependency. ALS shines a light on my worst character flaws, polishes them, shows them off. The hardest posts to read aren’t the ones written by ALS patients. The most painful posts come from caregivers, “I’m so exhausted,” and, “I don’t know how I’ll get through this.” “I can’t. I can’t do this, it’s too hard to parent kids and be a caregiver.” “I’m not enough.”

My heart breaks.

For them, for me, for my kids, maybe mostly for my husband who works so hard to “be enough,” to spin all the plates, be a great dad, be a great husband, take care of us, the house, himself…

That Sunday, the post was written by a wife who said that she felt their relationship had changed, that they were no longer husband and wife, but patient and caregiver. I twisted inside, cried out against the turn their relationship had taken. Her phrasing kept running through my mind and I couldn’t shake it. Church ended, the youngest kids bickered. We went home and he fixed something on our daughter’s car and the littlest ones clamored for his attention and I felt his overwhelm. I suggested we go to the park and I stared out the window on the drive. I changed the station from praise to some mindless, empty country song. And everything in me railed against our relationship changing, morphing, twisting from something I loved into something disdainful to me – patient & caregiver.

He took them on the paddleboats and I took a “walk” in my chair. A message came from a friend, “Thinking of you & praying for you…” I felt the tension, my inability to praise Him, the wall I’d been steadily building from bricks of anger, frustration, helplessness, begin to crumble.

I know God has said, “Never will I leave you; Never will I forsake you.” -Hebrews 13:5 And this is said in terms of choosing contentment. How? How do you find contentment when your portion is suffering? When you have little hope that any successive day will ever be better than the last?
So we say with confidence, “The Lord is my helper; I will not be afraid. What can mere mortals do to me?” But to stay mindful of that is incredibly difficult.

This is a middle chapter.

At the time that the wife wrote that, I am sure she sincerely meant it. I suspect she was aching for her relationship to be what it had been, but it’s important to recognize our relationships are always changing, never staying the same. This is a season where caretaking forces its way to the center of the stage. It does not make her less the wife nor him less the husband. This season is new to them, unfamiliar, and doesn’t feel comfortable.

Neither does a season of distress and pain make God less, nor me less His daughter. It’s just the relationship is changing and unfamiliar and I’m learning something new and it’s uncomfortable. I yearn for what was. It is an easy thing to praise and be joyful when the sun is shining.

Christian and Hopeful are prisoners of the giant, Despair in Doubting Castle. Not only were they beaten and in pain, they were locked in the dungeon and could see no way out. “Brother, what shall we do? The life that we now live is miserable. For my part, I know not whether it is best to live thus, or to die out of hand.” (Pilgrim’s Progress)

A study in 2018 stated that 56% of ALS patients consider patient-assisted suicide. I’m certain that number is 44% short of the truth. I think some probably discard it immediately. But as you lose every physical ability – the ability to be independent, dress yourself, bathe yourself, go to the bathroom yourself… it’s nearly impossible to not think, “I don’t want to die like this. I don’t want to live like this.” As of 2002 1 in 5 ALS patients chose euthanasia. I’m sure the number is higher now. There is scarcely a month where I don’t read a post that another PALS has chosen to actively end their lives. Unknown to most, that decision is perhaps doubly difficult for people with ALS. In the United States, you must be able to administer your own meds. In effect, you must choose to end your life while you are still able to do so, while you still possess the ability.

I believe part and parcel of our independent culture and of our society’s current ultimate goal of “happiness” rails against death and disease as though it’s abnormal and to be utterly despised. I hear often, “It sucks getting old.” Consider the alternative.

I can’t be deeply entrenched in the argument or controversy. But the ultimate goal for the Christ follower cannot be to die well, but to live well.

Only this I know – He has given me joy where there (reasonably) should not have been joy. He has shown mercy where, I reasoned, there ought be no mercy. Who am I to claim that there is no gain, no value, nothing to be learned in sickness and in death?
Proverbs 3:5 – Trust in the Lord with all your heart and lean not on your own understanding.
“For my thoughts are not your thoughts, neither are your ways my ways,” declares the LORD. “As the heavens are higher than the earth, so are my ways.” Isaiah 55:8-9

There is a woman I love who is a hospice nurse who has shared with me that, in death, the veil between life and death is so thin, that there is much there that is holy. We speak of this so little. We comfort the dying with these truths so little. In a society that prizes lightness and knowing all at a fingertip/ Google search, perhaps instead we need to dwell on weightier things as God’s chosen people and extoll upon the mysteries of God.

 

Broken

I’m not okay. Yesterday was rough. There are moments, in this disease, when I want it over. The blessing of slow progressing motor neuron disease is that it’s slow progressing. The curse is that it’s slow progressing.

It’s something I never say out loud… slow disease = slow death. It’s death by 1,000 paper cuts. First, your balance goes. You fall. You get hurt. Maybe, like me, you tear your rotator cuff, you bruise your cheek, split your lip. Maybe you fall into a door and carry a jagged scar on your forehead. The physical pain is uncomfortable. Your children watch you, put out their hands to steady you, watch you fall, see you bleed. They carry scars too. It isn’t the childhood I wanted for them. The emotional pain is sometimes unbearable. I would not choose this for them.

My legs weaken, muscles atrophy, forming shadows in the hollows. I graduated from cane to arm brace to rollator and finally, despite resistance, to my wheelchair. I got my life back in degrees. I could go places again, do things, except when I can’t. Like the day we went to that cute little coffee shop for a special morning with Ella, but two steps stood between us and success. She ordered coffee like a big girl. She carried it out like a big girl. She worried it would spill on me like a big girl. But she deserved to be a little girl with her mom that day. It wasn’t the morning I wanted for her.

My hands have begun to fade. Typing is no longer automatic, handwriting effortful. Braiding hair is a labor of love, clumsy hands twisting strands of hair, tears of frustration threaten to spill over.

My voice grows quieter, cracks appear, pauses and stumbles and mispronunciations. At first, I reasoned, I had talked a lot that day – and the next. The air was dry so maybe that was it. It became undeniable. I wonder if others knew before me that it was going, but couldn’t bear to say it, to ask the question? I know the time is coming when I won’t read aloud to those still little children who need to hear tales of adventure and heroism and of wrongs made right. Those still little children need their mama’s sharp, “Don’t do that!” or chiding, “Was that kind?” or reminding, “I love you so.”
Some fight ALS. They hold their anger tight to them – pouring it out on the FDA, the doctors, failed research, caregivers, the people they love… They don shirts that scream their outrage, “F*ck ALS!” as though outrage could slow or stop the beast. I’ve been reminded on ALS forums to be grateful for slow progression. They haven’t done the math. Slow progression = slow death. Slow progression = a childhood filled with Mom’s disease.

I sobbed last night as I admitted to my husband, “I’m not brave.” I thought I was brave. I thought I was strong. Instead? I’m surprised. Broken. Adrift. I don’t want this.
But God has allowed it. If God is all-knowing, He knows. If God is all-seeing, He sees. If God is all loving, He cares. And still the disease marches on. If God is all-powerful, He has the ability to heal. Still, He stays His hand. And the disease marches on. If I am brave, it still advances. If I wail and weep, it keeps coming. If I scream and rage, it continues to steal from me. God has allowed this.

Be merciful to me, O Lord, for I am in distress;
my eyes grow weak with sorrow,
my soul and my body with grief.
My life is consumed by anguish
and my years by groaning;
my strength fails because of my affliction…

Sometimes my heart breaks and I despair.

 

Mother, you must become less.

I have worked long and hard to teach my children biblical principles. Maybe you can relate? Morning circle with bible stories, singing hymns, books of the Bible as memory work… Later, as they grow older, studies on biblical character, singing praise, intentional teaching!

Ladies, the Lord laid something on my heart that I had not fully realized.

While it was good that I was teaching and equipping my children with knowledge and praying for their understanding, I needed to move aside. I don’t mean stopping our morning Bible time. I mean that they need to move into autonomy – their own Bible reading plan, their own quiet time to be still and know that God is God. I am no one’s Holy Spirit. If I equip my children with knowledge but they have not a personal relationship with the Lord God, their knowledge is useless.

John’s words, Chapter 3, verse 25-31:

“They came to John and said to him, ‘Rabbi, that man who was with you on the other side of the Jordan—the one you testified about—look, he is baptizing, and everyone is going to him.’

 To this John replied, ‘A person can receive only what is given them from heaven. You yourselves can testify that I said, ‘I am not the Messiah but am sent ahead of him.’ The bride belongs to the bridegroom. The friend who attends the bridegroom waits and listens for him, and is full of joy when he hears the bridegroom’s voice. That joy is mine, and it is now complete. He must become greater; I must become less.’

The one who comes from above is above all; the one who is from the earth belongs to the earth, and speaks as one from the earth. The one who comes from heaven is above all.” 

Understand your role clearly. Your job is to clear the path, point to Christ, and become less. May Christ be glorified.

 

Lord, Number My Days

I’ve been at this parenting gig for very nearly twenty-four years now. Motherhood is a process of continuous refinement. ALS is a disease of constant progression.

In October of 2019, my diagnosis changed from Primary Lateral Sclerosis to ALS, Amyotrophic Lateral Sclerosis. Essentially, an EMG showed that not only are my upper motor neurons dying, but also my lower motor neurons. The lower motor neurons also control the diaphragm. So, while PLS means eventual and slow full paralysis, the diaphragm is uninvolved. With ALS, there is diaphragm involvement, so eventually the person with ALS (PALS) will be incapable of taking a breath.

That morning, little more than semantics changed. My day to day, how my limbs moved, my routines, the needs of the children upon their mother didn’t change drastically in the moment I received the final diagnosis. However, it marked a mental and emotional change within me. The weight of the battle ahead that our family would face came to settle with full force in those next weeks and months. No one will escape the fallout of what is to come – not even my five year old son. A terminal diagnosis, one that has no hope of treatment, medication, or reprieve… Just the constant march forward of progression to full paralysis and death. ALS is an ugly disease and an ugly death and it takes relentlessly. It robs a mother of her identity as caregiver and nurturer. Instead, forcing a painfully close look at how you defined yourself and your value in this world. It is a treacherous journey for a Christian as you come face to face with your own faith and shortcomings.

It is not a journey without hope. The difference between you and me is this: I know, with little doubt, barring a miracle, that I will die and leave behind my children in this world. I have little hope of seeing my children grown, seeing my grandchildren grown, and dying old. But, there are times it occurs to me that I am blessed, perhaps even more blessed, because of ALS. I promise you, this is no Polly-Anna outlook. I have broken in sadness, body wracked with sobs, in the arms of my husband, alone in the shower, and even in the middle of a homeschool lesson surrounded by my children.

As humans, we have baskets in which we place our hope. My baskets were named, “My Own Self,” “Mayo,” and, lest I forget, “Misdiagnosis.” (I still really like that last one and revisit each of them occasionally in moments of weakness.)

Psalm 39
I said, “I will watch my ways
and keep my tongue from sin;
I will put a muzzle on my mouth
while in the presence of the wicked.”

So I remained utterly silent,
not even saying anything good.
But my anguish increased;
my heart grew hot within me.
While I meditated, the fire burned;
then I spoke with my tongue.

Show me, Lord, my life’s end
and the number of my days;
let me know how fleeting my life is.
You have made my days a mere handbreadth;
the span of my years is as nothing before you.
Everyone is but a breath,
even those who seem secure

Surely everyone goes around like a mere phantom;
in vain they rush about, heaping up wealth
without knowing whose it will finally be.

But now, Lord, what do I look for?
My hope is in you.
Save me from all my transgressions;
do not make me the scorn of fools.
I was silent; I would not open my mouth,
for you are the one who has done this.
Remove your scourge from me;
I am overcome by the blow of your hand.

Do you see here? Do you see how we rush and toil? For what? For no purpose other than to have, to attain, in our fervent grasping to find a source of contentment. The psalmist seeks to understand, to grasp how short his life is. Why? “Let me know how fleeting my life is…” Why would that matter?

Because if we grasped just how short our life was, we wouldn’t waste it on meaningless efforts. What does the Lord treasure? How do we serve Him? How do we love Him? I promise this: It is not being Martha, but instead choosing to be Mary. It is not in what we do, but how and who we are, finding our value and our identity only in our relationship with the Lord.
And because of who we are, as adopted children of the Most High God, Elyon, our lives are different and magnified in their brevity. We are not less because of short lives. And, I promise you, God was not turned from me when He allowed this. He very definitely allowed this. This was no mistake. The very awareness of our temporary nature makes us all the more acutely aware of our unique calling. So, where then do you place your hope? Ask the Lord to show you. It will hurt, I promise, but it is good.

 

Strive for Grace

It’s often said tread lightly – you never know what kind of day someone is having.  A few weeks ago,  I had the opportunity to go prom dress shopping with two of my daughters, 16 & 15.  Little trips, one on one or in small groups, are things to be treasured these days.  I am mindful these times will not always be.  There are days I wonder if the little girls will have the same opportunity to spend a day out with me when they are teens.  It’s bittersweet.

We took the Sunday afternoon as a gift and drove to a college town.  First stop?  Starbucks.  It was a mistake from the get go.  I should have known better.

I’m grateful to still be walking almost two years into this diagnosis- most aren’t.  After the little incident at Mayo with an ancient woman telling me to use my legs that first time I used a motorized cart, I don’t ride if I can help it.  However, on this particular afternoon, I knew it was going to be a long day if I traversed the mall on my own power.  So, we rented a motorized cart.  That was probably the second mistake.  The three of us made light of it and steered our way through the crowds.

My legs are not terribly dependable.  And, in true Kelly fashion, I generally refuse to recognize my limitations.  So, there was that moment that I thought I could both hold a cup of coffee with these wimpy leg muscles and look at dresses… Well, that was the third mistake.  Sure enough – splash!

Now, maybe no one ever cried over spilled coffee, but I sure wanted to that day. Embarrassed, I asked my daughter to get paper towels for me and tell the sales girl.  She called the mall janitor.  Twenty minutes later, I called to the man looking for a spill.  I apologized profusely as he walked onto the scene.  Should I have known better? Absolutely!  However, I wasn’t prepared for someone to gruffly ask why I dropped the coffee or, next, what was wrong with me…. And certainly not in that tone.  When I told him (with a shocked & offended tone) that I had a neuromuscular disease and I really was sorry, he asked me if couldn’t I take a joke? I steered away, feeling awfully sorry for myself and frustrated that I had snapped at him.

Won’t I ever learn to bite my tongue? And when the sales lady, overhearing the exchange, asked if I was okay, hot tears of anger and frustration were loosed.   This wasn’t how I had wanted today to go.

Fast forward to last week.  she had chosen her dress, but that mall didn’t have her size.  I assured her we could run to the other Dillards.   Late on a Saturday night, far too close to the close of business, we hustled into the department store.  I knew better than to take in my coffee!

We used the elevator.  While E. went in to try on dresses, I walked to the chair to sit down.  It had been a long day.  My legs and balance challenge my abilities in the evening after a long day.  And, with spectacular flair, I lost my balance and fell… er, spectacularly crashed onto a small wooden table.  With Hollywood effect, it splintered into pieces.  Hearing the clatter, she guessed that I had fallen, and rushed from the dressing room to pick up a rather bruised and embarrassed Mama.  I can’t seem to get used to falling and I most certainly never seem to do it with much grace.

I asked her to continue trying on dresses while I sought the sales lady.
I expected shock.
I expected frustration.
I expected sarcasm.
Instead?  Grace.

The petite woman who helped me that night picked up the bits and pieces as though nothing had happened at all.  She simply asked how I was.  She smiled sweetly.  She asked how she could help.

She didn’t know about my previous experience.
She didn’t ask what caused me to fall.
She’ll never know how her kindness soothed.

I’m just a mom.  I don’t look like I have a dreadful disease if you see me sitting in a chair.  My girls look healthy, happy, and beautiful… Not like they occasionally pick up their mom off the floor.  It is too easy to make assumptions.
At this moment, reading this, you probably feel sweetness towards the woman who helped me and consternation at the man who made it worse. And for a while, I held anger and bitterness towards him.  In light of her grace, his reaction stood out even more.

When I answered in that peevish tone to him that day, it was too easy for me to assume he had a “normal” day.  That everyone in his house is healthy.

What if his mother is dying?
What if his daughter is sick?
What if a woman dumped her coffee at the end of his shift and he’s exhausted from caring for someone and it got the better of him that day?

And even if he didn’t?  Don’t I want my grace to shine like hers? Oh Lord, forgive me my wrongs and keep working on me.  So far from perfect and so grateful to be a work in progress.

Interesting how perspective can shift.

 

Gratefulness in Homeschooling

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.

 

Spend it all

 

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.

 

To do it over again…..

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

 

Mother, Instruct Your Child

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.

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.

 

The next generation

It is an amazing thing, watching your child mother.

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.  My grandmother was that for me as my own father is the encourager for one of our own boys. That young man 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.