Monday, March 30, 2015

with love, future self.

Dear 3 years-ago-self,
Wake up!
  Today you will meet the Dr. who will tell you what is happening inside of your baby!  Don't be afraid.  Or do.  Either way it is ok.  And it's going to be.  Today you will meet a man who will seem a little mad.  He will look at Mabel top to bottom.  It will seem as if he notates and marks every little thing about her and it will make you feel both uneasy and thankful.  Until now, you've not had one doctor who will take the time to listen to you like he will, run the kind of tests that he will, or make you feel like she's worthy of an answer more than he will.  Dr. S will solve the mystery for you in just 3 short months if you simply take Mabel into his office today and let him. 
He will find the thing inside of her. 
And he will give it a name. 

For awhile now, almost a year probably, you have been knee deep in grief.  You have drowned yourself in the unknown, the complicated, the guttural and the inescapable.  You have exhausted yourself, and every resource thus far trying to find the answers.  It wasn't time yet, but it's time now.  Today is the day that will change everything.  Don't be afraid; the afraid can be over.  Today you should be excited!  exhilarated!  Today will be life changing and you will never forget it.  This is the day when this doctor will look at you, listen to you, be honest with you, and forge ahead beside you.  This doctor will name the thing inside of her. 
In just 3 months, you will know that Mabel, your baby, has batten disease. 
A life altering, mind blowing diagnosis that changes everything but changes nothing.  Because even without the name, you have fought for her, you have cared for you, you have loved her beyond explanation.  The name of the thing doesn't change any of that. 
But the name will bring you peace.  It will shake you out of grief.  It will open your eyes to who she really is. You will feel the mystery be solved and you will feel your heart resolve.  You will wake up from sadness and sorrow.  Your eyes will open soon after her diagnosis and you will feel new again.  You will feel alive again.
If I could tell you one thing about this day it is that it is all going to be ok.
You will receive a terminal diagnosis for your daughter in a couple of months but you will find some sort of strength in it that is unmatched.  You will begin to mentally prepare her funeral with peace and with ease because you will be able to accept the thing that once did not have a name but now does.  You will be able to accept batten disease because it is known in her.  You will be able to move forward in her life, at the prospect of her death because you know with certainty that those things are both full and true for her. 
Her life.  And her death. 
They are both vibrant.  They are both part of her.  Just as you suspected, but no one could tell you wholly.  Today, you will meet with a doctor who will call you in a few short months and confirm what you have suspected all along- "Mabel has a terminal disease.  But it doesn't change who she is.  She is the same today as she was yesterday.  She is yours."
Today you will meet a doctor but and you will meet a friend.  And in three years, when she is still alive and beautiful as ever, he will still be calling you.  He will still be running tests and doing research because there are parts of her that are still a mystery.  And you will be ok with that in 3 years because you will then know that you have an amazing team of people who are not only as interested in her as you are, but who love her like you do.  Who are intrigued by her, and who find her life worthy of answers.  This will constantly remind you that you are on the right path, the path that God laid out for your life.  It will make you feel incredibly surrounded.  In three years from now, you will be far less lonely.  In fact, you will be more than ok.  
In three years from now, Mabel will almost be 5 years old.  She will have lost all of her skills.  She will need 100% care.  You will have to assist her in pooping, you will have to carry her everywhere and prop her head as it will have begun to hang more.  You will be essentially homebound with her, especially in the winter.  She will have lost the ability to eat and be totally tube fed.  She will still be 18 pounds, not having gained any weight.  Her seizures will have increased and will look & feel much more scary to you.  She will go through long phases of intense crying, sometimes for 10 hours a day, and long phases of extreme lethargy, each unpredictable and taking their toll on you.  Emotionally you will adapt to each of these things far better than you could have anticipated and you will be confident in her care. In three years from now, Mabel will still be alive and the anticipation of her dying will no longer be scary for you because you will not only expect it, but you will understand better what it looks like  You will know what to look for, how to handle each change and you will have become an expert on her disease.  In three years from now, you will have been so well equipped with knowledge about batten disease that you are completely at peace with her diagnosis, her life, her care, and her death. 
Today, meeting with Dr. S, today changes everything for you.
Nothing for her.
But everything for you.
So wake up.  Put on your lipstick.
It's going to be ok.  
3-years-ago me,
Please don't be afraid.  In just a few short years every single thing in your life will look differently.  It will not be lonely, it will not be sad, it will not be heavy.  In fact, it will all be very freeing.  You will walk these next few years with such high priorities, such devotion to your child, such love and authenticity for her life.  You will do everything with such purpose and you will trust God in a way that most people never get the chance to do.  These next three years are life altering!  Life changing!  Marvelous!  They are sprinkled with all sorts of sadness, yet more joy than you can possibly dream or imagine on this day.  But trust me, you will be better. 
She will be ok. 
And you will be better. 
Chin up, sister.  Today you are starting the path that will enhance your life.  You don't know it yet but it will be such a beautiful surprise.  You are tired and you are worried that today will leave you right where you started but trust me, today changes everything for you. 
And it's going to be ok. 
You're right where you need to be. 
Hang in there. 
With Love,
Future self.  

Wednesday, March 18, 2015

come, spring, come.

Winter is nearing end. 
Physically and emotionally.
Thank God.
Winter is hard. 
It's within these months where I hold my breath, somewhere inside waiting for Mabel to slip from here to Heaven.  Winter is a silent lurker in the heart that is typically strong.  It brings about doubt, questions, sickness, cold.  It's gray days etch within me a glimpse of what they may inevitably and indefinitely feel like when she's not here for me to hold, smell and care for.  Winter is the brief glimpse of impending coldness and longing in my soul. 
But winter did not steal my girl from me this year.  Oh no. 
The sunshine showed up and sang his victory song just a few days ago.  He shined brightly into her thin, auburn hair and touched the tips with refreshing. 
oh Spring.
Her eyes met mine and for a second it as was if she saw me.  Through to the depth and entirety of me.  She does, I'm certain.  It had been days since she had really responded to much with a smile but in this moment, her little nose crinkled like mine does and her lips spread thin across freckled cheeks.  Her tongue, always emerging, didn't fail.  My eyes filled with wet and I reached down to brush her eyebrow with the tip of my finger.  'So perfect,' I thought. 
'Not made for this world,' I thought.
Two nights before as I carried her limp, tired, 18 pound body to her bed, I felt the weight of her and the weight of the week consume me.  I laid her down and laid beside her.  It had been an exceptionally scary and non-typical day.  Her body was limp; her color, gray like winter.  She had nothing- her body was ragged and non responsive to sound, or movement.  Earlier as she lay in my arms I remember wondering if this was it; if this would be the night that led to the morning when she wouldn't wake.  Was her brain tired and finally shutting down?  Was the energy her body needs to simply breathe going to escape her as she slept?  Would this be the last goodnight I whispered?
I wept beside her as she slept, something I haven't ever done before.  I rubbed her hand as it fastened around mine and I watched her little limbs jerk to and fro under the weight of her blanket, as they always do; involuntarily, thanks to this wretched disease.  I listened to her breathing, slow and steady.  I smelled the crease of her neck, deep and deeper.  I looked closely at her ears, the way they curve; how one opens at the top and how one does not.  I pushed the sweaty curl of her hair behind that perfectly imperfect ear and lay helpless to what the night may bring for my babe. 
Night is like winter, you see. 
Dark, cold, lonely, secretive. 
I spoke it out loud to only one. 
"Something is different.  Things are changing.  I am terrified.  This is so hard."
A couple of weeks ago a batten family that I met at our conference last year lost their sweet daughter unexpectedly.  She was in rather good health, considering.  Her mom essentially went to lay down her keys on the counter and when she returned to kiss her daughter, she was no longer breathing.
Just like that.
In one single instant.
The bridge between life and death, nearly invisible. 
My heart shatters time and time again, day after day.  The sadness, strain and stress of this disease and all that is to come is remarkably overwhelming.  To sustain life outside of batten disease is a challenge because if I let it, it could easily be all consuming. 
Her care, the worry, the constant changes, our emotions. 
It's undeniably the hardest road that anyone should ever have to walk:
Living with a child that you know is going to die.  Waiting for the signs that could show you that the time is near.  Realizing that there may not be any signs at all; that she could be gone in a single instant with no real warning.  Looking at the changes in her eyes, body, and abilities and questioning what they mean.  The ups and the downs from one minute to the next; one day to another. 
This life is one that very few know.  None should have to. 
Winter often feels a bit like a thief to me; stealing the sunshine and a bit of my joy. 
But then, as always and as promised, Spring.
Fresh, open, beautiful, miraculous, refreshing, opportunistic, peace bringing spring.
When I woke to morning, after the night that I questioned would be her last, two blue birds landed on the back patio of our new home.  The evening before I had watched the sun set over the hill and breathed deep the promise of a new day.  I no longer pray in such a manner, though, rather I pray for the God of life to give and take away as He will.  I pray that when the 'taketh away' occurs we will feel peace and that the literal breath of Heaven would be the wind on our cheeks as we walk through our days without our girl.  Until then, I rejoice with morning. 
With blue birds and sunrise.  With coffee and gasping breath from the lungs of my almost-5 year old.  I rejoice with tube feedings and jerking movements, or sleep in the middle of the day where sleep didn't used to be.  I rejoice with the buds of yellow roses outside of my back door.   I rejoice with wonder, question, sorrow, uncertainty, but also with joy, promise, life, and hope. 
Things are changing in my girl inside just as the dance of the days outside. 
I can feel it in my spirit just as certainly as I feel the spring air settling in. 
There are tangible, noticeable differences but mostly her spirit and mine are speaking.
And understanding.
Goodbye winter. 
Thank you once again for the lessons you have taught me.  For the longer days, and the deeper thoughts.  For the internal twists and turns that were necessary for my own growth and strength.  I am positive it will serve me well in the days to come. 
For now, I welcome spring with slight uneasiness, never knowing what our days hold.  But whatever it may be, I am grateful.  To be her mother, to walk out this life with peace that truly goes beyond describing or understanding.  To always and forever know the joy of a God who created it all and made it oh so good. 
“It was such a spring day as breathes into a man an ineffable yearning, a painful sweetness, a longing that makes him stand motionless, looking at the leaves or grass, and fling out his arms to embrace he knows not what.”   -John Galsworthy

Friday, February 13, 2015

Valentine Letter.

Nora, Braden & Mabel,
Happy Valentine's Day!
Today is the day of love. 
The Bible tells us that God is Love.  He is the ultimate form of the one thing that all of our hearts long for on this earth.  If we know and believe in Him, we have a love that is incomparable to anything that we will ever experience here-we have the hope of an eternal home with Him!  It's so special and so important. 
For me, this day is a reflection of our God.  He created us in perfect love and He put us here to love others the same.  If we love with kindness, meekness and a softness we will be doing exactly what we are called to do.  You all do that really well; you have such special gifts and such special hearts. 
My biggest fear is that you will grow up and your version of love will be tainted. 
I never want you to have an idea of love that is inaccurate, painful or that causes you confusion.  Please always remember that God is the only true Love.  The rest of us are human.  We are flawed and imperfect.  We have the ability to fall in love, yes.  But we also sometimes have the ability to hurt those that love us the most by our own choices.  That doesn't take away from the love that you feel or once felt, it just changes things. 
Life is full of changes but God Himself [love] never does.
1 Corinthians 13:4
Love is patient and kind. Love is not jealous or boastful or proud  or rude. It does not demand its own way. It is not irritable, and it keeps no record of being wronged.  It does not rejoice about injustice but rejoices whenever the truth wins out.  Love never gives up, never loses faith, is always hopeful and stays to the end.
That is God.
That is love. 

So today while we, with the rest of the world, celebrate one another and the people that we love on Valentine's Day, let's not forget our one true sweetheart.
Our Lord who loves us created our hearts to give love to others. 
Sometimes that means forgiving the unforgivable.
Sometimes it means hoping when we feel hopeless.
Sometimes it means learning to love again when we've been hurt.
But mostly it means allowing ourselves the greatest gift that has been given in Jesus.
Just loving Him and letting Him love us in return.
Happy Valentine's Day, kids.
You're loved so very big.

Thursday, February 12, 2015

Happy Galentine's Day.

Today is officially 'galentines day.'
I think this term and this day were originally dubbed from the show, Parks and Recreation, but I don't really know and honestly don't really care.
The idea behind this day, this February 13th, is to celebrate the ladies in our lives and I think it's genius.  The goal is to wrap them up in compliments, adorn them with gifts, and celebrate them for all they do for us.
Minds, Bodies, Spirits.
This day actually means something to me and I think it was the best idea next to coffee creamer ever to be invented. 
To celebrate the women in my life for all they have done for me would take an eternity but I sure can express my love for them to the best of my ability.  It will still be lacking but it's all I have.  It's all I can drum up because to be perfectly honestly when I sit down and think of each of them, the members of my village, and think about all we've walked through together I'm completely overwhelmed and the words fall incredibly short. 
This time of this month is really very difficult for me.  A couple of years ago these weeks were leading up to some of the worst days of my entire life.  I didn't quite know what was soon going to happen so hindsight makes it all the more painful.  It also makes me see things with a really wide and gracious perspective.  It makes me look back and appreciate the backbone that I was given by way of support and encouragement from some of the strongest women I know. 
I'm so lucky to have them.
At this point so many things go unspoken between us. 
We are in a room and we look across the table at one another and each of us knows the extent of all we have endured, together.  It's a very peaceful, nurturing, content feeling to have shared in the most vulnerable, most raw, most intense, most devastating, most joyful, most beautiful, most terrifying, most abundant things with them. 
The eyes of my friends have seen it all.  Their ears have absolutely heard it all.  There has been no filter, no resistance.  It's as if we all entered into this union together knowing that we are in it for the long haul no matter what that takes.  I have a beautiful marriage within these friendships; one more fulfilling than I could have dreamed. 
I have been strewn across a couch, snot dripping, sobs heaving, shirt soaking, screaming, flailing, stomach jolting, body trembling while several of them held me.  Tightly. 
Never to let me go-not until I was ready.
I have been looked in the face and told very sternly that I was going to the lawyer, tomorrow morning, 9 am.  Enough is enough. We will go with you.  It will be ok.
I did.  They were.  It was. 
I have watched them fill my yard for every cookout and every birthday party.  I have watched them watch me as I speak to a crowd of hundreds about our girl, our Mabel.  I have watched them bring babies into this world, leave loveless marriages, move across the country with one bag, or move across the country with many little boys and one little girl that stole our hearts and gave us hope.  I have held each of them as they have experienced loss; of a parent, a pet, a job, a home, an unborn baby, their dreams.  I have met them in the doorway of my home, our safe place, after long days at work, long days with children, long nights with husbands, long mornings with bosses and long lists for the days ahead.  I have held hands as we cross the finish line of races we have prepared together, I have encouraged each of them on new endeavors, whether joyful or difficult, in hopes that whatever it is will teach us ALL a lesson about life.
And it always has.
And they've always always done the same for me.
We are a team, this village and I.  We work together to come up with plans for our weeks and we do life very well together.  We nurture each other's children, we attend appointments when other mommy's cant, we step in and play whatever role needs to be filled for whatever moment we are in and we do it really very well.  It is practical, tangible and the greatest gift in this world.
We have bought homes, left homes, gotten engaged, gotten divorced, had children, found diagnosis', shuttled children, attended every ballgame, and dance recital, pledged to every math-a-thon, bought every girl scout cookie, answered every single text and every single call.  We have dropped every single thing to be there for one another in those darkest moments and we have learned to do so very functionally. 
We are the lucky ones and every day we know it. 
Our lives are very rich and oh so full because of one another.
So without further ado:
To my dearest galantine girls, my village,
Today I want to say thank you.  Thank you for blonde haired boy brothers, chubby cheeked & Asian girls, talks of IEP's, ADD and every other behavioral issue that comes upon us (there's far too many, lets just admit it.) Thank you for late night talks and day time walks.  Thank you for answering when my text simply says, 'kitchen floor kind of day.' 

Thank you for coffee & flowers unexpected, last minute grocery store trips, being a school bus when I needed you to be, and giving of yourselves so wholly.  Not just to me, to everyone.  That's what you do; you are givers.  You are the most selfless women I know and I'm inspired every day to continue being that way because of you, and in spite of my circumstances. 

Thank you for cookie dough and wiener roasts. Thank you for pulling my living room apart to put me back together and for never leaving my side in it all-not ever.  Thank you for holding Mabel and buying her pj's (and meeting my glance when we all know she's getting way too big to be wearing them.  Thanks for pretending she's still an infant right along side me.) 

Thank you for walking in and loving each other, too.  We all met somewhere in the middle and because of that common ground we have branched out to each another in ways we never would have expected.  That has been the most rewarding and most beautiful thing about this life with each of you...seeing us grow into one another as well. 

Thank you for the strength that you give me.  Thank you for the peace that you bring me.  Thank you for the assurance that on my worst day, the front row on either side of me will be lined with faces that shine brightly the light of God and the hope of each other.  You will never know what that means, but I do.  I know because I've already walked through some of life's hardest things and I did so hand in hand with you.  Looking back it felt like a year of my life was a really tough 'red rover' game where none of you would let go of me long enough to let anything else break through. 
You were my barricade.  You were my fortress.  You always are. 

Thank you for deciding not to run or leave.  For instead, buckling down when life got really incredibly mucky and terribly painful and deciding to walk through that freakin fire with me.   
None of you thought twice.  You just stood there, taking the lashings with me, one after another.  And it refined all of us.  It sharpened us.  It created in us....

Today is about you. 
But I celebrate you every day. 
Your wisdom, your beauty, your successes, your triumphs, your stories.
The gift of your friendship is what makes my life complete.  Seeing you makes me know we are all ok no matter what is happening around us. 
Together we make up  this really powerful, eloquent, strong-willed village of women who have seen it all, endured most everything and came out better than ever.  Every single one of you is a really necessary part of me.  So thanks for being you. 
I love you.
Happy Galentine's Day! 

Sunday, February 1, 2015

snow day 2015

We waited with anticipation for the first big snow of winter.  It happened to fall on the eve of February 1st.  I woke this morning, looked outside and breathed it in. 
So white.  So crisp.  So clean and untouched.  The silence was beautiful.
The snow fell all day. 
 February is kind of a hard month for me so today I welcomed the snow with wonder.  It felt as if the Lord opened up the Heaven's and sprinkled down just the right amount of happy in our little piece of the earth for this very day.
Happy February, kid.  You're doing it.
Thanks, Lord. 
 Two years ago at the end of this month is when our world as we knew it changed.
Very sudden.  Very final. 
Very painful.
I remember the oblivion I was living in.  I remember it all so clearly. 
I was simply raising and homeschooling my bigger children while caring for my recently diagnosed with a terminal disease youngest child.  We were still actively doing therapies and I was wrapped up in research.  It was a time of busyness but not necessarily a time that felt out of the ordinary.  I had no idea the amount of discontent and disconnect that was happening in my home; specifically in my marriage at that time.  It's sad for me to think back about how unaware I was. 
I was just really happy doing what I was doing. 
Enjoying simplicity and very common daily tasks:  sledding, schoolwork, baking cookies, having dance parties, bedtime stories, and wake up routines.  It was mundane and difficult but it was mine and I was really very happy doing it. 
I was sad about Mabel, yes.  I had spent nearly two years questioning everything about everything before her diagnosis.  But when the call came, so did a freedom from those questions and in this month, 2 years ago, I can honestly say I was better. 
I was happy. 
 And now, 2 years past the trauma and pain of it all, I can honestly say I find it difficult to find words to fit into the pieces of a life that I once lived but no longer recollect vividly. 
Absolutely I have memories of the children and I in our old home.  I have memories of my village and I in the front yard of that old home.  I have memories of nursing babies, and befriending therapist after therapist.  I have memories of adopting Heidi and watching her run through the house, escaping out the door and me having to chase her through the neighborhood.  I have memories of crayons on the walls and mouse after mouse in the traps.  I have memories of babies crawling, walking, running and bicycling down the driveway.  I have very painful, etched-so-deep-into-me memories of lonely nights, crying and thrashing for the life of my baby.  I have memories of laughter and music and dancing and praying and cupcakes and gingerbread houses, and Christmas mornings, and Easter egg hunts and fall decorations and garage parties with friends. 
But I cannot for the life of me place myself back into those memories or back into that life in a way that really makes sense anymore. 
I am grateful for our minds; for the memories that we are able to make and maintain.  But I am also grateful for the heart.  For it's ability to heal, more forward and love again-smarter, better, more prepared and less fearful.  I am thankful for our body's ability to go into literal shock and box away the too-painful stuff for another time; maybe later, and maybe never.  Either way, I am glad.  Sometimes it's too much 'stuff' and there's just not enough strength to muddle through it. 
Or maybe there's enough strength but it just needs to be allocated elsewhere.
And that is absolutely ok. 
In my case, it wasn't just was necessary.
 February is here and it just gets me thinking.
Thinking about a time when life was so much different. 
It was so much less joyful.  It was so much less enjoyable. 
It was painful and cold and lonely and confusing and sad.
But it wasn't the end. 
 I wasn't going to let one bad February and one bad March define me or the lives of my children.  I was going to be ok and I was going to forgive and love again.  I was going to do the things that I loved with the people that I loved, and take care of myself and the kids in ways that I not only know are right, but essential.  And I was going to do all of that with the hope that God would reward my life because He promises to do so if we simply trust Him.  I never cared if I would receive that reward here on this earth but I always knew that facing eternity one day, I would be able to do so with confidence for the choices that I have made along the way. 

This February, 2015, looks a whole lot different. 
We are in a quaint little home but are about to make yet another, more permanent move. 
Nora is 8 and is incredibly emotional, sad, fragile, smart, and complex.
Braden is 7 and is incredibly funny, loyal, busy and loving.
Mabel is 4 1/2.  An age I didn't know that we would see.  She is long and grows more every day.  She still smiles and taps.  Yesterday she said 'mom' on purpose every time I asked her to.
I am more content, more joyful, more peaceful, more calm and more in love than I have ever been before.  I am thankful for every single step I have taken since the beginning of February 2013 because every step has strengthened me, prepared me, equipped me and thrust me further into a life that I was perfectly designed to lead. 
The snow today was so beautiful. 
My children, all together, wrapped up in one another, playing on top of it's softness was overwhelming.  I am so grateful for every little thing that Nora and Braden get to experience with their sister.  I never take a snow day for granted, that's for sure. 
And this one, this February 1st snow day, was extra special for me.
Just look how far we've come. 

Wednesday, January 28, 2015

to everything there is a season.

Six months ago, after giving it some thought, I decided that I was going to try to attend an 8 week Certified Nursing Assistant course.  It would be a few hours each day, 4 days a week.  Chris is here to help with Mabel and in my mind I was thinking that it would be a practical way to direct some of the energy that I use stressing, worrying and caring for Mabel into something that would eventually give me the ability to care for others.  
I thought about it, prayed about it, talked about it, even paid for some of it.  This would give me the incentive to really try.  I wanted to get out of the house, interact with other adults, use some of the medical knowledge I have gained and hopefully learn a little something along the way. 
I think that I came to a place where I felt like things here at home were stable enough for a time that I could direct my thinking toward the future and set some goals for a life I may want to lead years from now. A life where I see myself in a career that I would enjoy and thrive in.  A life where I am able to use the gifts God has given me outside of the home and pour into the lives of others.  In my mind, it was always just meant to be a trial.  If I could finish, I would finish.  If I couldn't, I wouldn't push myself. 
In this ended up being a very emotional reminder. 
Monday, I started.
I attended class for two days. 
And I'm not going back.
Sunday night, the night before I was set to begin, I felt so much anxiety.  It wasn't really about leaving the kids because the big kids are in school and Mabel was home with Chris.  It was more so within me; trying something new, and diverting from my typical schedule.  But then before bed Nora cried and explained how she was worried about me going.  How she worries about how I feel and where I am through her day.  My heart sank.  I told her that it was just important for me to try, that I would be ok, that many mommies go to school and work and everyone would be ok.  We prayed and she went to sleep and woke up fine the next morning.   
Class was fine.  Truly.
I would have learned and I would have been able to give insight in ways that other student's probably won't hear elsewhere.  It wouldn't have stimulated or challenged me necessarily but it would have been a good outlet. 
But I came home to a fussy Mabel on Monday and knowing what I know because I've never left her side, I could tell she wasn't feeling well. 
Almost immediately I knew that would be the end of that.  
Yesterday I woke up and went back to class.  I had a terrible headache which I'm positive was caused from stress and anxiety.  I took some meds to start my day and was still feeling determined to push through.  But I knew it wasn't going to work. 
I got home and Mabel cried for the entire day.  She seized and eventually puked.  
I carried her through the house, head pounding, back aching, stress and anxiety on the surface but pouring out of every single part of me. 
Finally the tears came. 
Hard, hot, fast.

None of this will be very articulate because it's hard to explain something that is so unexplainable and nonsensical that our minds can't even comprehend.
My baby is dying.
She's still dying.
She is not actively dying today, as her lungs sound good, she isn't running a fever and all of the other signs point toward her living another day. 
But she is going to die.
Likely in her childhood and likely after a very disturbing, gruesome, full-of- suffering kind of illness shuts down her immune system and her brain finally says it's time to stop waking, seizing, crying, laughing, and living.

And you know what? 
Sometimes I forget.
I am not quite sure if it's because I am with her every day.  Is it because my life has become so skewed and tainted that the very absurdity of the fact that she has a terminal illness is lost on me?  The very fact that her brain is actively shrinking and her muscles are atrophying just as quickly is just part of my nonchalant talk and truth.  It has become so robotic for me to explain that it almost saddens me to hear it come from my lips. 
"Ramee, introduce yourself to the class and tell us a little about why you're here."
"I'm Ramee.  I am a single mom of 3 children.  My youngest daughter, Mabel has a rare, terminal brain disease.  She will likely die in the next 2 years.  She has been and continues to be on hospice care in our home."

I cried into Chris' chest so hard last night that I felt the strength of his body shift under me.  Sobs overtook me and the horror of it all flooded me wholly.
It's been a very long time since I let it.
She's dying.
What am I doing? 
She's dying and she only wants me all of the time.
And I only want her. 
I am so wrapped up in her and she in me that we don't leave each other-not ever. 
Like literally not ever.
She's an extremity on me. 
She's attached and I'm attached and I am not detaching.
I am not letting go and planning my future so that I'll have something to do when she dies.
That sounded like a good plan but that's absurd.
She's going to die but she isn't dead.  She's here in my home, in my arms.
I can hold her.  Why would I choose not to hold her?
Poor Nora and Braden. 
They probably forget too.  But then I'm sure they remember.
What am I doing?
Nothing is as important as this.
Nothing is as important.
Nothing will ever ever be as important.
Ashley came. 
She held me.  I cried harder.
We were meeting the village for dinner. 
I wanted Becky.  I really wanted Becky.
The days in this house are so long.  They truly are.  They are sometimes so hard and exhausting that I can't think straight.  But I realized yesterday that my threshold for stress has grown.  It has accommodated me.  It has abounded for my life.  And when I added just a little something more, something that caused a little bit of stress and a tiny bit of anxiety, it was too much.
System crash.
Shut down.

This journey has always been about God shaping me and molding me.  It's been about teaching me.  It is the very nature within me to want to look ahead to what I can do next.  Where can I go?  What can I change?  Who can I impact?  What can I do?
But four years ago, after years of letting me wander and rush through my life, God crashed in almost as tangibly as an earthquake full of destruction and put a stop to it.
I learned how to find contentment and peace with just 'being.'  Trusting that this was His plan and that I was directly inside of His will.  Knowing that there was a reward for what He had called me for. 
But honestly that all made a lot of sense when I was inside of a marriage where that was decided between the two of us for our family. 
Now, I am not inside of that marriage.  And my whole life feels like a series of events that I have had no say in, no control over.  And as frustrating as that is; as utterly infuriating and enraging as that is, it is also very humbling.  It feels like God still plucks me from my own life and reminds me that He is in charge and that I need to just. sit. still. 
I need only to do what He has entrusted me to do.
And that is to be the very best mom, the very best friend, the very best sister, the very best companion, the very best daughter, the very best cousin, the very best human that I can be.
And I am my very best, wrapped up in Him, wrapped up with her, in this home.  
I think I struggle sometimes with feeling like I don't contribute to life outside of here. 
Not financially, but just in general. 
What do I give to the world?
But then as my mom gently reminded me, I'm giving the world to the only one's who need it.
I am giving of myself to them every single day and they will remember. 
It will be important.  It will have mattered. 
And though it feels very frivolous day in and day out.  Though it stretches me and challenges me to just 'be,' I know that in the midst of that I am teaching them the most important lessons I can.  Lessons that can't be learned at school, in a textbook, or by an educated teacher.
Lessons of life and death.
Empathy, and courage.
Longsuffering and Grace.
Triumph and tragedy.

What happens here matters. 
It has always mattered and it will continue to matter.
I will never look back and regret spending my days exactly how I spend them.
And so many people love and support me. 
I feel surrounded constantly.
You support me if I'm home, enduring the days of crying, thrashing, biting, seizing, puking, sadness, tears, frustration.
You support me if I say I'm going to try something new.
You have and continue to support me in every choice, in every step along this journey.
And you'll never know how grateful I feel for that. 
It is what pulls me through these reminding, altering, very difficult moments.  
Several people have said that I have my whole life to work or go to school or do anything I want to do.  That may be true.  I may have an entire life to 'live' when Mabel isn't here.  But I can't imagine that will feel much like living at all.
I can't imagine that I'll want to go forward and accomplish those same dreams that I once had. 
My dreams are so much a reality right now. 
So I may go back at some point.
But I very likely may not.
And all of that just has to be ok. 
Because life just is what it is.
Mine just happens to be a little heavy, a little hard and a little sad sometimes. 

But it is wonderful, full, rich, and beautiful most of the time.
I have to remind myself that this season of my life is everything.
It is the entire reason that I am able to glorify God fully.  Because she has taught me how to do that. 
He uses her to teach me so much.  
This year I hope I have taught my children the things that have mattered most. 
I believe I have.
This year I was able to wake with them each morning and put them to bed each night.  I was able to be at every event and every appointment.  I was able to hold them when they cried about change or because they were scared.  I was able to keep Mabel well, keep her happy and keep her home.  I was able to go on dates and pour myself into a relationship that I know is directly from God [because honestly....]
I was able to sit with my grandma as she entered Heaven and hold her hand, telling her how much she was loved.  I have been able to be with my grandpa many days since and love on him, support him, sit with him, remind him that he is not alone. 
I was able to feed and take care of my great grandma in her final days on earth as well.  I was able to pick up my brother when he needed a ride, hold birthday parties for nieces and nephews that will always, always be mine no matter what, see my sister when she has days off, and visit my uncle in the hospital when he needed me to be there. 
I was able to be present. 
I was able to be available.
I was able because He created me for this. 
Not for school.  Not for a job or a career.  Not for now and maybe not for ever. 
"To everything there is a season..."
And this season is my really beautiful life.


Friday, January 23, 2015


The space that she fills on the nook of me; it's the space where life began.
It's amazing to me to look back and be able to pinpoint the exact moment when it felt like I was born.  No one remembers being born, after all. 
But I do.
It was the moment when the delivery room erupted with laughter.  Not because of the experience, and not because of overwhelming release.  It was because of Mabel.
Because of her button nose and her darkest hair.  Because of her biggest eyes and tiniest body. 
We laughed like Sara laughed in the Bible, with a kind of fullness that the Lord could probably appreciate.  A fullness that was not made for this earth.  Sara laughed because God promised her a child long after her body was worn and tired from age.  I laughed, and maybe we all did, because God promised me a child who would fully wear my body down and tire me from within.  She would exhaust me in the richest of ways.
In the midst of that deep, guttural, rich laughter I remember looking around the delivery room vividly.  My mom was blonde with some dark in her hair.  She was tall, slender and beautiful.  She sat by my bedside most of the day as she had twice before, awaiting what we thought would be a third redhead to add to my clan.  This time was different and as I looked toward the end of the bed at her laughter, I made sure to etch it in my mind.  My mom has a beautiful smile, a noteworthy laugh; one that my sister and I carry on, and I listened in that moment that Mabel was born as she allowed the fullness of joy to overtake her.  She looked at my sister and Jeni cried.  She cried so much, as she always does.  This baby looked just like her.  She was the most beautiful twenty-something I had ever seen and I had adored her from the moment she was born too, so it was no surprise that I felt the same when her twin-child emerged from my body and breathed life. 
She would continue to breathe life into all of us in the days to come.
[and then even for years.]
The day Mabel was born, and essentially so was I, my dad was also in that room.  I had no idea how that would foreshadow his role in my life in the years to follow but looking back I am so thankful that I let him stand beside me as Mabel entered the world.  He smiled the smile that is mine and he cried through tears of happy.  He has been my rock many times since we were born; me, my second birth and she, her first.  He stood at my side, rubbing my forehead, holding my leg, cheering me on. 
Long before this moment he had given me away to a man who helped create these children but in that moment, I remember feeling as if I just wanted to lay back on the shoulder of this man; my father. 
I felt his overwhelming pride for what I was capable of-growing and delivering life, but also for being his.  His child who was giving him yet another grand child. 
In the hard and painful years to follow, I have talked and cried more with my dad than ever before.  I have felt his earnest and gentle support, tender heart and strong hold as I've walked through some of life's hardest news, and most devastating changes.
Sometimes I think back to his sweet face in the delivery room that day and I remember how much he loves me.  Because of his love for me, I have never felt alone.

She took her first breath, and I breathed for the first time.
She cried a tiny cry and my insides literally leapt from somewhere deep and opened up. My insides opened up at the sight of her. 
Every child has helped me come alive, little by little, extracting parts of myself that were necessary for making me a much better person in general. 
But with her, I knew that my lungs were full and my stomach had likely carried it's last.  I laughed at the fulfillment of that moment.  Of the literal explosion of wholeness that my body, my life, had just delivered.  I pushed and I pushed and with ease, she was alive.  Completely alive.
And she birthed me as much as I birthed her. 

Yesterday, as her body dangled from my hips, neck aching and back feeling the tug of her constant weight, I wondered for a moment if one day I would look back and think that it was odd that she had never taken a step, not ever eaten food, never spoken a word to me.  Will it be strange to look back at photos and realize how teeny tiny her body truly was?  Will it haunt me? 
The thoughts come and are fleeting, thankfully.
Because she is here and I am fully alive with her in these moments. 
I came alive for her and continue to be because of her.
Most people never do so. 
What a gift of life she has given. 
What a gift He gave me in her.
How very lucky I am.