The Dark Days

I've always seen my future self as a mildly accomplished writer.  In my daydreams I've used my experiences, thoughts and heart-reflections to pen chapters that would make people feel seen, understood and encouraged.  Hell maybe even my words would be used to break down the walls around hearts that were long ago sworn as fortresses of protection, no matter what the cost.  I've been there, I get it.

So what would my writings mean if they didn't include my darkest days?

Fake.  That book would be fake.

So here it is.  The dark days.  The ones that few people like to admit.  The ones that make you feel like shaking your fierce fists at heaven is an impulse you can't control.  The days that happen to all of us at some point in life, whether we like to admit it or not.

So I'll write - and not leave a chapter out of my "someday" book.

It's highly probable that my two sons ages 7 and 3 have a rare genetic disease that is degenerative.

And I, somehow and in some way, passed it onto them through a genetic mutation in their X chromosome.  Go me.

And my daughter as well.  She would be a carrier - and her kids will have a 50% chance of having it.

Oh and my boys will never be able to have their own children.   Friggen sweet.

And they **might** live until they're 60, others don't see the flip side of childhood, but the progression will vary.  Let's wait and see, huh?

Facts:  So there's insulation that surrounds all of our nerves (myelin) and that acts as a highway of sorts for messages sent to and received from the brain - yeah that insulation doesn't get formed (nor can it be produced) in people who have this disease.  Tragically, as the impulse (message) tries to make its way across the axon (highway), it leaks out where there is no myelin.  This results in little, if any, impulse making it to the next neuron in the chain.  Over time the brain simply stops trying, bit by bit.  

Hence - the rare, genetic & degenerative disease... that is (A) probably what they have, (B) something we get to wait a whopping 8 weeks to get confirmed.  

1 in 200,000 people.

So with my 2 boys does that mean 2 in 400,000?  So when I look at them playing in my living room I can picture almost HALF A MILLION other kids who do NOT have this disease playing around them?  Pretty much those are the numbers.

You might be thinking "Ummmm she sounds angry".

I told you - I'm in the dark days.

And do you want to know what I believe to be true in the core of my being about these days?
I AM OK TO BE HERE.   This brokenness is warranted.  This grief is a normal response.  These feelings are justified.  We will research remedies and alternative treatments, I will find my smile again and see the light and beauty in all of this... but not today.  And not tomorrow.

If you feel like telling me that it's all going to be okay and I need to see beyond these emotions, I will tell you that while I appreciate your desire to see me heal, this part of the journey is completely necessary.  And I spent way too many years not feeling the things that I had a right to feel, so I will let this one flow - if ya don't mind.

I do believe cognitively that God has a plan, and that I'm loved, and that there will be great purpose in this.  I do however believe in my heart that beauty and freedom can come from being vulnerable and unashamedly messy with my Maker.  The wrestling (defined:  the sport or activity of grappling with an opponent and trying to throw or hold them down on the ground) - is a crucial part of this fork in the road that I NEVER saw coming.  

And I believe that these truths of being LOVED greatly, accepted fully, MAD as hell, confused beyond measure and utterly crushed in my spirit can ALL happen simultaneously.  He can handle it, I'm sure; and He welcomes my honesty, I'm sure.  

He's my Jesus.  He's understanding, patient and well-versed with my limitations.  He moves me when I need to be moved.  He can take my anger and confusion.  He wants freedom for me in my innermost parts.  He knows what he is doing even when I tell him he can't possibly have control.  He can handle me, I'm not too much for him.  He aches when I ache, he bottles my tears, he mourns over the mess of this world we have chosen through our toils and pleasure seeking hearts.  

He is safe, he is available, he is meek he is my friend, he is enough, he is beside me, he will never push, pull or bribe me.  He doesn't need me to perform or be something for him.  He doesn't need perfection.  He doesn't require that I move at a certain pace or take steps with a smile on my face.  

He takes me as I am, I am not too much for him.  He takes me as I am, unashamed, with  his hand outstretched if I should desire to place my palm in his.

My Jesus he walks beside me, he sits when I need to sit, he calls me forth when it's time for me to rise up and out of my pain.  He is enough for me in these dark days, and I am not too much for him.

herding cattle

Parenting can feel like refereeing too often.  Or policing.

Don't do this.  Do that.  Now.  Faster.  Hurry.  Be nice.  Say please.  Share.  Eat your food.  Go potty.  Do your homework.  Pick up your things.  Behave.  Use your words.  Don't wine whine.
You get the drift.

Many hours of my mothering journey have been spent on correcting behavior with the subconscious belief that these rules or habits will bring peace and order.  I don't believe that they do.  I know one thing that they bring me without a doubt:  exhaustion.  A close second is a pretty steady stream of frustration.  And from my kids' perspective (if I could formulate these thoughts in a way that they might understand), I'd be willing to bet that they feel managed.  Or perhaps herded... like cattle.

Each day the same.  Get up it's time to get ready.  Hurry and eat or you'll miss the bus.  Come on I already told you twice to get dressed.  No I said the heavy jacket it's super cold today.  You aren't listening.  If you don't stop moving I can't get your shoes on and the bus is almost here!  Fine you can just stay home.  No wait you need to go I have things to do today.  HURRY!!
Okay goodbye I love you to pieces have a great day honey love you so much mua mua mua hugs and kisses I'll miss you like crazy!!!

Oh but the afternoon is fun too.  They come home kinda tired (okay fine... exhausted depleted little shells of humans). "I want a snack I'm so hungry.  I'm grouchy and need some alone time.  Where is the ipad?"
"You just got home you don't need to go straight to the ipad.  How was your day?"
(insert wailing)
At this point it's a 50/50 between these:  "If you're going to act like that you can go sit on your bed and come out when you're calm"  //  "Fine!!  Take the ipad geez louise!!"
On goes the evening:  Food / "rest time" AKA check out on an electronic device for far too long / maybe some play time that sounds like this "STOP IT THAT'S MIIIINE!!!! ... "OOOWWWW HE HIT ME!!!!" ... "GIVE IT BACK NOW!!!" / followed by homework if we are lucky / dinner / bath / book netflix / bed.  And wine.  Sometimes lots.
Sleep.  Repeat said morning routine.  Repeat afternoon and evening routine.
Monday.  Tuesday.  Wednesday.  Thursday.  Friday.

Saturdays (pajama day) is in fact pajama day for a reason.  Everyone is dead tired from a hellish week.  We literally have no capacity for each other.  Food.  Movies.  Lounging.  Naps.  Play time.  Dinner.  Bed.

Sundays are a bit better because we have some energy, get around for church, come home, eat, nap, play some games and remember what it was like to enjoy each other, then have dinner and send the kids to bed.  Reference above to see the beginning of Monday morning.

HUH!?!?!?!  What is happening?!  (Are we the only ones!?)

Our kids have all been home for a few weeks during the holiday break and I have been hit square between the eyes with a startling realization (are you sitting??).  My children love each other.  DEEPLY.  And they are really great for each other.  They teach each other.  Encourage each other.  See each other's heart and talents.  They have such a patient tenderness.  A joyous playful adventure full of creativity and unique expression.  And in the last few weeks I have witnessed some of the sweetest and kind-hearted gestures between the three of them.  I feel like I saw who they really are when they thrive.

So I am convinced.  Just as much as God chose us to parent and lead our three beautiful babies through the world - He also gave them each other.  And it's not an afterthought.  It's on purpose.  Each one unique yet having soul-needs that would be met in part by each other.  Reserved needs filled by siblings.  Imagine that!!

My heart is to cultivate an environment where my kids are living their best lives, they feel free to express themselves just as they are, they know their massive worth and value, they don't doubt for an instant the insane amount of love that we have for them, they have the space to ask difficult questions and explore the hard parts of life in a safe place, they see their interests and strengths unfold before them and actually have time and resources to grow in those talents, a place where their weaknesses are out in the open without shame or guilt, and a place where they do not have to look out for themselves because they KNOW everyone has each other's best interest at heart.

I don't know what it all looks like, but I'm sure our Papa will work all of that out.  I spent way too many years trying to hold onto control over my life that I just don't give a hoot anymore - it is what it is and it always works out, right?!  We are moving towards part-time homeschooling in the next few weeks, still saving up to buy some acreage, intentionally moving towards simple living in a tiny house, starting some ag. projects and growing food to sell to local restaurants, selling what we don't need and can't justify holding onto, and continuing our home business with doTERRA and introducing people to the freedom of essential oils.  We have what we need in the many fulfilling and diverse relationships around us and the basic physical necessities of life, this much I am sure of.  The rest of it can so easily become distracting, noisy clutter that can rob us of the simplest yet most profound parts of life.   People.  Love.  Freedom.  Time to just be, not do.