Monday, October 1, 2012


 I grew up on in the country.  
Down a steep hill, under a railroad trestle, past the familiar neighbor's house and tucked behind a giant hill was our little house and the land that my dad worked hard to maintain.  My mom mowed many acres of that land for many years and my dad worked more than one job just to ensure that we could stay on that farm and run, carefree.  

Some of my best memories are there.  
In the summer we were barefooted and wild, exploring our territory and wandering the creek bottom.  Many nights we would walk the quarter-mile lane soaking wet after swimming in the ditches after a good, warm rain.

 In the fall we made our way into cornfields where we would play and hide for hours.  Then we would use the corn stalks to make amazing scarecrows.  Our friends would come and we could climb atop round hay bails and pretend to save the kingdom.  We had cookouts and played traditional autumn games like bobbing for apples and pin-the-tail-on-the donkey.
I have amazing stories from my home and from my childhood.  Stories that, even faded and distant, are remarkably bold and sentimental to me.  I long for these kids to grow up on that same land, in a house that is cozy and warm the way that ours was.  

It had it's cracks and it had it's distractions.  It wasn't without heartache or pain.  But it was ours and we were safe, happy, together and loved.  My childhood was beautiful and messy and joyful and rugged.  Growing up in that house on that land was so vital in making me who I am today.  
 Today I feel sad for Nora and Braden.  
I feel like no matter what we give them; this house, our attention, homeschooling, friends, pets, memories that are wonderful and irreplaceable there is always going to be one thing that resonates louder in their hearts and in their minds.  It's one thing that has shifted our life from one that is mundane and simplistic to one that is intricate, delicate and sometimes downright sad.  

That one thing is not Mabel because Mabel is not her disease.  But the thing that I believe will cloud the happiness and muck the joy will be that of the unending presence that lurks here.  

No one knows what it is like to live in this house day after day and hear what we hear.  No one knows what it is like to see the things we see, and do the things we do.  
Except them.  Except Nora and Braden.
 Some day I pray that they will write such marvelous words about their childhood.  
About how their mom pulled out decorations for every minor holiday and decked out our house with excitement and meaning.  I hope that they remember the details of the fall trees and the way that the kitchen smells when I bake treats for them.  I hope that they think about the adventures they have in our back yard and the forts that daddy makes them in the toy room.  I hope that they remember the tickles in the hallway and the cuddles under thick, cold quilts.  I hope that they remember late night whispers and the early morning smiles that I give, even in my weakest moment.

I hope that at the end of this childhood it isn't all torn at the edges and tattered from rips that seeped into the life that I am trying so desperately to give them.  
I look around and I see such deep love given from each of us to one another.  I see the years that have been added to both Daniel and I; his sitting gently on the grays in his hair.  Mine buried deeply in the new creases under my eyes and cheeks.  
I hear the redheads say things that no child should have to say.  They question doctor visits and ask about proper feeding times.  They monitor jerking movements and comment on how often we see Mabel's tongue.  But also, they have learned empathy far beyond their years.  They understand that when someone is in pain; when someone is experiencing something so deep; so tumultuous-that we should be there.  We should step in and love them and never turn our backs because we might not know the right way to help.  My children, little as they are, have old souls and wise minds.  
The past few days we have been 'in the sickness.'  I have been checking temperatures, watching closely for any signs of change and trying desperately to keep Mabel hydrated.  So far, we have.  It has made me realize just how scary and crucial times like this are going to be for our family-every time.  I have been laying in my bed constantly thinking about how I will stand up to the doctors who don't know the right way to care for her, the speech I will make earnestly when I explain this awful brain disease that has slowly started to take over our sweet girl.  I lay in bed and I think about people that have disappointed and people who have risen up and really staked their claim for this family.  I lay in bed and I ponder life and imagine what it might be like without constant crying; constant worrying.  
And with every thought comes a secondary, insufficient guilty one that leads me into a sudden sadness that inevitably ends in lonely cries in my bed late at night.
I suppose that in all of my thinking, all of the turning that the wheels are doing I recognize that life is made up of moments that are unforgettable.  They shape us and change us and balance us.  Without the little moments, there would be no room for the bigger ones.
The life altering, crippling and sometimes shattering ones.  
I am realizing more every day that to step into our lives means a huge sacrifice for others.  It means that you will probably grow to love a little girl with matted hair and a huge smile so deeply that the thought of not having her around will literally bring you to your knees in sadness.  The wind will be taken from your lungs as you try to breathe the mere thought of the future and how it will affect you.  But put yourself aside for one moment and then imagine if you were her mom.  Or her dad.  Or her sister.  Or her brother.  Imagine with me for one moment how it feels to live in the details of our day and what it may entail for us.  Then let yourself understand that the sacrifice is worth it.  Because even with the great pain and the great truth of this life, you will change ours if you just step in.

Nora and Braden may not have the delicate details of a childhood that I had.  They may not have the memories of life before a sick sister.  They will probably always know that their mom was sad and that every day was hard.  They will remember a baby that didn't eat, didn't talk, didn't walk, barely sat up, always cried, didn't play and couldn't help herself at all.  They will remember a time when we discussed things like hospice and nursing care (even if they don't understand it until much later.)  They will remember a time when a shadow of our normal covered that which is normal for everyone else.
But my prayer is that they won't remember it with the negativity or with the heaviness in which I write it.  I pray that they would remember it as ours.  
As a hard, ferocious, mysterious, passionate dance between what the world thinks life should look like and what ours really does.  I pray that when they tell their story of childhood that it involves all the wondrous truths of what these years held.  
Because the mysteries were deep and insightful.  The growth has been life changing.  The unity has been unforgettable.  The loyalty has been purposed.  The friendships have changed us.  The tears have grown us.  The plan has unveiled in us exactly who we should be for exactly this season.
So I hope they remember that.  Those things that have made mothering them that much more exciting for me because now, only now, do I know things that are really worth teaching them.

I hope they remember a daddy that loved unconditionally and worked really hard for us.  I hope they remember the giggles between the horrendous cries of a sister that was the greatest gift that this world could have been given.  I hope that they remember the way the cat wraps herself up in our rug and how the handle on their bedroom door gets stuck at just-the-right-place when trying to close it.  I hope they remember late night microwave s'mores and playing under the stairs as they 'camp out.'  

I see memories being made in the middle of this really hard life and I hope they are etched in them the way I'm purposing them in myself.
Nobody understands what goes on here.  
The sounds, the smells, the tears, the cries, the heartache, the pain, the loneliness, the challenges.  
Just because I write about, we talk about it, we live openly, I post photos-doesn't mean that the whole picture is complete.  

It isn't.  It's a fight every single day to stay sane.  
To say that my patience is 'challenged' gives so little credit to how well I really do get by.  I can't explain any of it to it's true form but I can say that in it all, I think we're doing ok.
He is mine.  They are ours.  God is still God.
And the rest is really just about surviving because when you wake up each that's the only choice you have.  But beyond that, I am choosing to try really hard to create a life, a childhood, a pocket full of memories that is suitable for these kids so that we don't look back one day and see that Mabel's disease swallowed us up.  I refuse to let that happen, although it easily could.  

On the days when it's all I think about, I bake a cake.  On the days when she cries for literally hours without ceasing, I turn up the music way too loud and let the kids dance until they can't anymore.  On the days when I don't feel like being touched or touching, I wrap myself in Daniel's arms and force myself to love him anyway.  
So at the end of it all, I hope for the sake of saying so, that they can look back and see that we made it and we made it really well.  We lived this one life beautifully and with alot of very complex, detailed, unstructured and unsolicited love.  

That's my wish for them today.  
I hope their childhood memories can be summed up with 'love.'
Always, only love.


Rachel said...

I have told you so so many countless times before that I know that I know that I KNOW that these children will always look back and see a sacrificial mom. Nora will someday give birth and she will look at you and say "wow, my mom really set it all aside for us." Braden will become a father and he will say "wow, my mom really loved my dad through it all." I am so sure of that. I know they see through the sickness and that sadness because they still care about little things like who's toy is that and can we go to the park. Yet they are compassionate generous. I would take seasoned, smart, wise beyond their years children like THAT over "happy, typical" kids anyday. I believe you are teaching them things without even knowing it, and I cannot wait for the day that I see it come full circle for you. I can't wait for Nora to tell you what a fun mom you were, and for Braden to tell you that you remained beautiful through it all. Because you are all of those things-and we all know it. PS-your writing is becoming kind of out of this world phenomenal?! Start that book my friend..... I love you :)

Amy said...

I second the phenom!! Bless you Ramee..bless you..

Kirstin Stenberg said...

I just discovered your blog last week.
I am so sad for all the heartbreaking similarities your family and another family who's blog I faithfully read.

From the redheadedness, your little girls with Batten, and so many other striking similarities.

If you have not visited their blog, please do. I think there is lots to be shared between you.

Andy and Jenni said...

So, so glad you found us. (Thank you, Kirstin!) And thank you for leaving a comment on our blog. Andy and I spent a few minutes on your site (we'll spend more once the boys are in bed, and will add it to our reader...)
You're right, there are many similarities - and I bet there are more we don't even recognize yet. I'll look forward to staying in touch -- please, please, if there are questions we might be able to answer (about what our days and nights were like, about what medications worked, about anything, really) don't hesitate to ask! Big hugs to you, and to Mabel, from Ohio <3