Thursday, August 27, 2015

....for you shall laugh....

I've cried every day this week. 
 
At the end of a long run when thoughts of shakey-handed baptism and quick 'salt of the earth' sermons flood my mind for the very first time in almost 3 months. 
And then my mind spins because it hasn't even been 3 months and yet, my God, it feels like an eternity. 
"Salt enhances everything," he said, "and she did that to our lives.  Mabel enhanced everything and made it better."
 
A beautiful butterfly, wings spread wide as I tilt my head just enough to take notice of it's delicacy.  My knees wobble and shake until they hit the gravel beneath me.  I am all alone at the end of our driveway at the end of a walk that she would have adored; birds singing and trucks blowing by me.  She would have tapped as music played and I would have sang out beneath me to the longest legged girl in town; toes painted like upcoming fall. 
 
The moment when a new photo book comes in the mail (they come routinely) and this time, there are no photos from when she was alive in it.  Only memories that I'm lucky enough to still be able to share.  But it's a punch to the gut.  Shes finally been gone long enough where she doesn't actively exist on the pages anymore.  It's vulgar in my mouth and my stomach feels like it's rotting away. 
 
 I sat at the cemetery on her bench and I wept until my body ached more than it's already aching.  I hunched and wailed over a bench that will soon be taken to have her name and photo etched on it's front.  Permanently. 
4 years and 10 months here.  Forever elsewhere. 
 
It's funeral bill moments. 
Tucked away tightly; it's details never meant to be looked at or seen.  Until they are. 
And then retching alone in a dirty bathroom, heaving dry the nothing that remains.
 
It's beautiful celebratory moments like friends having new, healthy babies; lucky to be alive.  School starting with kids who are 'resilient' and 'can bounce back easy,' as if 'bouncing back' from your sister's death should just come to you naturally.  As if the memories that were made don't eat you up with stomach turning and heart racing.
 
And then it is those moments.  Walking to school only to get there with a gut that is twisted and tears starting.  Sitting and praying together in front of the drop off line, a spectacle for the supportive but also the nosey.  The confliction isn't lost on any of us; these children and I.  Even they feel those things.  But then a God of perfect timing brings a friend and inside her car we jump, drive safely home where we belong; together, she and I.  She doesn't want to go in sister's room.  "It's too hard for me now that she's dead."  Tears falling.
Dead.
It's the first time I've heard her say the word out loud and it stings me deep.
We end up there anyway, draped across the couch where she was draped across me as she took her last breath.  Big sister feels guilt and sadness that runs so deep.  Mama feels helplessness in her own grief, sadness, despair.  The burden is so heavy, I tell her, let's not carry it ourselves.
We cry and pray and wait for mercy.
He always shows it. 
 
A friend who lost her beautiful daughter texted me this week with amazing news. 
She then went on to say "No one tells you how gone, gone really is, do they?"
And they don't.  Or if they do, you can't comprehend it. 
 
This same friend blogged beautifully recently about her daughter and their surviving children,
 "She is more than a sad little ghost caught in a single picture frame.  She is more than a historical event.  She is more than hazy, half-glimpsed visions of red curls and pill bottles, ivory skin and wasted youth. 
 
None of us had the privilege of really knowing her as she grew, but we tell them what we can.  Who knows what might sift through and lodge in the scaffolding of their brains, but they are not too young to understand the currency of memories, how they keep you company.  They learned early on about the clenching muscle of the heart, the way it wants to grasp the ungraspable, preserve the ephemeral..."
 
This week I have felt the pain of a thousand pained people. 
I look at their faces, all of them and as usual, I am grieving hard for the ones I love.  And also for myself.  In two days she will have been gone three months. 
And that is no time at all. 
Yet it is everything.
 
Just like her life here with us, actually.
No time at all, but everything. 
 
All that we have done all summer and all that we must go on and do is overwhelming my spirit and theirs.  They can't fathom that we would have to wait our entire lives to see her again.  I hear it and my heart literally bleeds purple, fast.  I feel it rushing. 
But all in a moment I feel the sweet peace of what they have just said and let it rush over me. 
 
They know they'll see her again.  They have hope.
They trust in Him. 
 
I have concluded that I will very likely weep with an indescribable ache every day for the rest of my existence.  But after my brother held me in his arms this afternoon he said something so simple and yet profound, "Well, sis, I don't think there's much else we can do about it."
And then I wanted to cry for him, her uncle, too. 
The pain is so great. 
 
But he's so right. 
Time marches on without her.  The days pass and the world around us forgets a little more each day.  I'm determined to feel it all, as always and allow the people around me to do the same. 
She was ours to love.  She is ours to grieve after all. 
---
 
"Blessed are you who are hungry now, for you shall be satisfied.  Blessed are you who weep now, for you shall laugh."
Luke 6:21
 
To my little love who is now free from disease; who can now see with clear vision, eat without hindrance, lay without jerking, sleep without medicine, be without pain...
I am so happy for you; so sad for us. 
I love you with an incomparable, unfailing love. 
For more information on batten disease, please visit www.bdsra.org
You are always welcome to donate to research through the bdsra in memory of Mabel. 
Please, also, feel free to follow our journey more closely (frequently) on instagram:  rameelin
 
Thank you for your ongoing love and support. 

Monday, August 17, 2015

Summer Vacation {michigan style} 2015

Respite.
What I so desperately longed for her body but could never truly give her.  Yet she has received it eternally and I am grateful. 
 
Here on earth, in the time that is far from standing still; moving rapidly and ever changing-respite is even still so very hard to find. 
Where in my days can I find relief from the aching and the nagging in my spirit for her; the longing, mostly, the missing. 
  When, oh when, can my mind break and find relief from the thoughts that swarm heavy; run fast through it; racing one after another like oceans to the sky?
 
For ten weeks I have watched all of us; Chris, the kids, and myself wander along through this grief in all of our own ways.  We have waded through it, danced through it, ran from it, dug deep in it, clawed hard past it, blown right by it, ignored it, stayed away, tucked inside, clung together, fell apart.  We have done what grieving families do and it has all been normal and oh so good.  But the time was here and I knew we needed it.
 
A 10 day respite from our every day life in the form of a Northern Michigan farm house. Crisp, fresh air, an open sky, winding roads, tallest pine trees and every day filled with beautiful nothing.
Nothing but each other, that is. 



Yesterday we went to the cemetery; her 'da' and I, after returning from a trip that gave us everything I feel like we needed at this exact time.   As we stood over the place where her body rests, I looked at him in awe. 
We took her there, too, he said.  They've all been now.  These memories are so special because of it.  They won't ever forget because we'll remind them that she went too.  


He's right.  It was just last summer when I left them for the first time ever to spend five days exclusively with he and Mabel in this exact place. 
Everywhere that we took them, I was sure to say it aloud, "we brought your sister here, you know...she loved the beach."



"Your sister loved the yard here.  She laid on her blanket for hours and chewed her hands like she always did."




"We brought your sister to this beach before we left Michigan last year.  She was exhausted and cried a lot.  Here let me show you the pictures..."


It was a trip that I was unsure about taking.  I felt emotional reservations because quite honestly, I haven't been away from home for a very long time.  Even when she was alive, we didn't leave the house much or often, or for any amount of time.  She had gotten so sick.  She just couldn't. 
I was ok with that and so in some reclusive way, I have adapted to being here and enjoy it more than I knew I could.  Also, being away from home for an extended amount of time is always hard but being away after losing her seemed harder. 
 
Would I miss her more, being further from home?  Would I long for her more?  Would I get there and feel more anxiety than I already feel because at home, I can manage it.  I have it handled.  What would I do being away? 
 
Everyone was supportive and I expressed my fears really openly.  Everyone encouraged me to try; it would be good for all of us, they said.  And they were all right.  

You see, she has done everything in the world to run from it for an entire 10 weeks.  She has avoided this house at all costs.  Ashley reminded me that she did the same when her brother died.  We were just teenagers; follow her lead, she is coping, she will be ok. 
 
So I have. 
And she is. 
But she also isn't. 
On our last night in Michigan, she had her biggest cry yet, wrapped in my arms and aching for her sister.  Her sadness, her guilt, her anxieties, her disbelief that this is how she will feel forever-all came crashing down and it was as if 10 weeks was one minute and time finally caught up with us here together.  I held her tight and told her that our Father is holding us tighter.  She sighed and I felt the release that she needed in the expanse of one breath. 
Sweet Michigan.  

















In Michigan I got to see my kids be kids which I haven't actually seen in a very long time.  Other people get small, short glimpses into their childhoods when they spend a brief amount of time with them but in my day to day life I only see children who have been thrust into very adult situations at a very young age with very little say so in any of it.  

I was reminded just how 'normal' they are. 
I was reminded just how enjoyable they are and how much fun they are capable of having and how much joy they are capable of giving back to others.  I was able to really see them and not just look at them.  I was able to really, truly 'be' with them for 10 entire days. 
It was incredible.  






You see, this boy hasn't wanted to leave her room for 10 weeks.  While one ran the other secluded himself and of course we allowed that.  It wasn't right or wrong, how they coped, it just simply was how each of them could until now. 
 
 They are innately created differently.  The entire make-up of who they are is different.  And so it made sense to me that he would do this; cling close and want to feel.  He wants to lay on her pillows, cover himself in her blankets, smell her things and breathe her in.  He wants the ache that reaches his bones.  He has felt it as it has come to him, always head on and then moving on.  He is grieving very intentionally, though he doesn't know it yet.  He's very present with it all and though that has been a challenge for me to reign in and sift through for his sake, it has also been so great for me as his mom.  He has given me the freedom to do that beside him and with him. 
 
But here, together, we broke free from the bedroom and into the most blue and open waters you have ever seen.
Sweet, Sweet Michigan.  







For the last ten days there was nothing to do.  No time restraints and no restrictions.  We ate ice cream for dinner several times, did nothing but stick our toes in the sand and hold each other's hands.  We woke late and went to bed early.  We drank really good coffee and ate really great cheese.  I went on several country road walks all alone while the kids played soccer and swung high in hammocks with new cousins, new friends.  I sat low in a chair while the breeze blew by and read chapters of a book that I started nearly two years ago.  I listened closely to my heart and let it feel all it felt. 
And it was good. 











"We brought your sister here on the last day of our trip.  We held her high out above the water.  She was so tired and rubbed her eyes...."
  Her hair was ratty that day, as it usually was and she was slobbering.  Chris held her tight and I looked out into the water with such adoration of a God who created it all.  I knew that He would take care of her in such a way that only He can, and I was right. 
He did do that for us.

Coming back here was going to be the hardest for me, I just knew it. 
I remember last year as he held her feeling so much in love with the both of them.  I couldn't wait to get home to Nora and Braden but I wanted to freeze that moment in my memory forever.  I remember standing on top of the sand, on a day identical to this one, only a year separating the sunshine and knowing that I would never forget it.  I knew in my heart then that she wouldn't come back again with us.  I'm not sure that I ever spoke it but I remember knowing just how sick she was.  I always knew that each moment could be her last.  That each big trip could be her last.  I always purposed myself to remember the way that she looked on each specific day of her life. 
 
sigh.
I haven't forgotten. 
 
This day was not the hardest for me, after all.  In fact it helped me remember that I have not forgotten.  And that means everything.  










The heart of God is the grieving. 
Do you see it?
 
He Himself did it. 
He sent His son here; his only son to be betrayed, humiliated, to suffer, and to die.  He knew the cost.  He experienced the grit, the turmoil, the ache, the vomit. 
The man was God.  He felt it and knew it all. 
I'm not alone here; no no.  He is here.
Maybe where the ocean meets the sky in northern Michigan.  Maybe where the sand hits the waves in the sea.  Maybe atop a tall mountain, made of sand or rock or peace alone.  Maybe in the belly of a shallow pit-full of loneliness and ache of the unknown.
He is here.



Vacation has never been more vacation.
I have never felt more relaxed, revived, refreshed or in love.
I came home being incredibly grateful for 10 hour car rides with 2 obnoxious kids and a high anxiety dog.  I came home feeling more than thankful that all the choices in my life led me to right here, right now, with this man who loves us so freely and so well.  I came home realizing that 'home' actually is wherever they are; which is my heart, so in fact I never truly leave.  

I was afraid I would feel overwhelmed with the distance but the distance to Michigan is nothing compared to the distance of Heaven and yet she felt as close as ever. 
She's in my soul; that's where she has always lived. 
My soul is her home, and hers mine.  

Reminders of her are everywhere. 
Small town, Illinois and crisp aired Michigan.  
I watched them run freely, open to the earth, and totally limitless.
 I swallowed hard the air in my lungs.  I let loose of all things that toiled in my heart in these moments.  I made myself be present with me.  With them.  With him.  And Him.  and even with her, so distant and yet always so near.  



Mostly it still doesn't feel real that she's not with us. 
The intellect inside of me constantly tells the emotional that it's so. 
 
She isn't here.  She was very sick.  She's not coming back.  This is all real.  It's true. 
Breathe.  Laugh.  Come back now.  Breathe again.  Drink Water.
She was here.  It really happened.  She is dead.  That happened too.
It's all ok.  Breathe.  It's all ok
 
I pound my feet hard to the ground as I walk and talk quietly to myself. 
I capture the moments I'm in with photographs so I don't forget. 
I'm purposing.  I'm trying.
Vacation pulled me in and helped me not have to try as hard. 
I just was. 






I thank God that they're still little.  Oh to be their mom while they're little! 
To be totally present with them in the here and the now; what a gift. 
I could have never been this mom without her.  She gave me this gift of now. 





Oh Nora and Braden,
Please don't ever forget this trip to Michigan. 
Please remember the whitest clouds against the deepest blue sky, surrounded by the tallest trees and the roads the led straight into the water that led straight into nothing. 
 
Please don't forget the smell of the air, burnt with something; fresh like fall, windows down and hair blowing.  Please don't ever forget the way we would all breathe it in deep and laugh because it was good.  So good.  

Please never forget the things you learned on this trip:
Things like family is who we choose to make family with.  Cousins are cousins based on love.  Friendship is full of freedom and expressing and inspiration and creating.  

Please always remember the evening air and the taste of marshmallows on 7 and 9 year old tongues.  Please always remember the way I laughed at you and rubbed your freshly washed, but not brushed hair.  Please never forget to run barefoot the way you did the last two weeks. 
Please Please Please don't forget.  
Please don't ever forget me now, in these moments, loving you all so big.  Please know that even in losing her, I love you so deeply.  I miss her but I am in love with you.  And so is he.  He's crazy for the two of you and you're so lucky.  Please don't forget. 
We are working really hard to be here with you, and for you, right now.  


Oh please don't ever forget this day and the way that the wind blew up the side of this sand dune just across our cheeks.  It's the same wind that blew on your sister's cheek too; the same Maker who surrounds us all with His breath that way.  Please, when you miss her big, think about us being here and know that she was there too.  Then and now. 
Always, always with us.  
Please don't forget to be little.
There's been lost time, I know.  There's been weeks and months and even years that have been so heavy.  But this 10 days trumped it all.  It pulled us away from the trauma and into the triumph and we came home different. 
 
Please remember.  








Please don't ever forget the places we ate, the jokes we told, the bedtime routines that were cherished.  Please don't forget Heidi running free in the country like a brand new dog, in all her glory.  Please also note that I fell in love with her a little more this week than ever before too.  She has made my heart so happy (thanks to him, of course.)




Oh kids, how we love you. 
I pray that this is the exact thing that covers every other childhood memory and makes life seem like perfection when you look back on it one day.  Day to day, the reality has not been perfection.  It has been rough and rugged for you guys and mostly downright ugly.  But you both are so brave and so beautiful and so strong.  I have never been more proud or thankful for you than I was in the last 2 weeks.  I can't explain how often I was in tears over a moment in time that was so overwhelmingly good, like this one....




The wonder of it all takes my breath away, and always has. 
The wonder, after all, is God. 
We are not meant to understand it or complicate it. 
We are simply made to stand in awe of all He has made and know that it is good. 
It's all for good. 
 
I think you are both learning that.  I think deep down you both know it to be true already.  I just pray that now, we are able to show you in all new ways so that you can see it with your very own eyes. 
 
"Taste and see that the Lord is good.  Oh, the joys of those who take refuge in Him!"
Psalm 34:8
:




Respite:
noun.  An interval of rest or relief.
 
For five years my goal was to bring Mabel respite.  I believe she was created for this earth for exactly 4 years and 10 months but not a second longer.  Her respite came in the form of Heaven and oh how lucky she is to finally have it!
 
I will forever be thankful that 10 weeks after she died our family was able to drive 10 hours to Michigan for 10 days together.  What a time of respite we received and needed, even longed for down in the deep places of our souls!  We made memories together that we will cherish forever. Memories that both connected us to her and helped us feel her near, but also- memories that were set apart and made for the four of us in order to move forward together as a family unit.  This was so critical and so special. 
 
Ending our summer with thankfulness and full hearts...