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 case...it 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."
.silence.

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.
 
Mabel.
 
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.

S

Friday, January 23, 2015

alive.

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.
 


Saturday, January 17, 2015

new walls.


Yesterday I drove by the old house.
It's the first time in many months since I have.  And I was surprised by the range of emotions that I felt.  My big white house, once my safe place and dream come true.  That house turned quickly into a place that felt tainted.  In every room, at every turn I felt hurtful, painful reminders.  Memories and feelings of betrayal, aggression, frustration, sadness, arguments and eventually a family torn apart have separated me from many of the beautiful memories that I wish I could unravel.
 
I brought Mabel home to that house.  I woke in the night and rocked her little body hour after hour in that house.  I fell hard to the cold floor of that house, time and time again seeking answers; some I never did find.  I chased babies, puppies and kittens through that house.  I worshipped in that house, nurtured [and lost some] friendships in that house.  Mabel did years of therapy in the middle of it's unheated living room, sprawled across the floor with some of the strongest women I've ever known.  I received the diagnosis call in the garage of that house, standing next to the firewood that would eventually run out and leave us cold when my husband did the same.  I researched and baked and danced and cried and ran and sang and loved and fought and grew and withered and planted and harvested and photographed and breathed and lived in that house.
 
Really, fully, truly lived there.
 
Every room was specially painted.  It was delicately mine.  My touch was in it all.  I had worked and toiled to make that home truly ours.  And I think when we left, everyone that we loved felt a loss.  That front yard hosted more cookouts and get-togethers than I can count.  I would mow it and plant flowers around it, knowing that it was the place where we would gather, all of us, for solitude.  We spent so many spring and summer days in 4 white chairs on the driveway, chasing the shade when the heat overtook us.  We watched kids run up and down, up and down.  We extended quilts and welcomed neighbors.  That house was the breeding ground for me and my beautiful village.  We took our lives day by day, but always together and the core of those relationships were either built or grown in that big white house.  For that alone, it will always be incredibly special to me. 
----
The kids speak of the house often.  We let them talk about their memories, remembering all the games they played, places they hid and things that make them happy to think about.  I try hard to relate to their grief of not only the family they once knew but the place where that family dwelt, changed, and grew.  I try hard to foster their memories while incorporating the beauty of the changes we have experienced along the way.  Though hard, they have been really valuable to all of us. 
 
The kids love our new house.  We have been here for almost a year and it has been a quaint, quiet, simple home for us to transition into.  In this new house, we have experienced a whole new sense of healing and changing.  There are painful memories that stop me in my tracks at times.  For instance, Braden won't let me play worship music here, not without crying.  He remembers the worship that was played in our old house and I'm sure that the authenticity and memory of those moments is incredibly painful.  Just recently, we broke through that a little and I caught him worshipping with his own guitar in the kitchen of the new house, which makes me proud.  His heart is ok which helps me know that ultimately, he will be too. 

Nora, as with everything else, has the hardest time.  She misses many things about the old house.  She misses her kitten that was born right after her dad left, a sort of healing for her heart.  Both the mommy and baby kitten ran away while we were moving.  They were outdoor cats and I'm sure they sensed the upcoming change.  She misses her bedroom and the cuddling that happened there.  She misses the sidewalk and the driveway and the tree in the backyard where she could climb and play.  But she also has done a remarkable job of adjusting here.  She has made neighborhood friends and seems to be the leader of the pack.  She loves our new house as well, and I can tell that she has made sense of what this new family looks like and what it really means.  For me, this little house has given me the chance to be more intimate in Nora's grief and I'm forever grateful for that. 
So many painful memories from a home that was meant to grow us. 
Not all bad memories, but all sprinkled with some sort of happy AND sad.  They've been very simultaneous in my life in every other way, so why not in the place where we live?  Why not?
That is life, after all. 
Happy and sad.  Changes and grief.  Pain and joy. 
It all goes beautifully hand in hand and as long as we are prepared for the depth of that, it somehow molds and makes us. 
 
I don't know how many nights I held a crying baby in that house, or how many painful secrets were discovered.  I don't know how much love was made or hate was unfolded.  I don't know how many parties we threw or how many broken hearts walked through the door...
...but what I do know is how well that house held it all. 
 
The door was opened right away with the promise that it would be 'a safe place to many,' and indeed it was.  It was a beautiful, sheltered, strong fortress for the sometimes crazy changes and challenges that life threw at us during that season of our lives.  I will always be thankful for the commitment of that home; for the very sturdy and strong manipulation of it's foundation because of us.  That home was my refuge in many times of need, and though I remember it's floors as being cold and my departure as being the same-my heart has nothing but warmth for it's walls.  
And now our family may be gearing up for yet another change, another transition and we are hopeful that it will bring us even more healing and even more happiness.  I am grateful for each chapter of our lives because each one has such great significance to the overall story.  The Author of it all has all things planned for good, and we are trusting this to be true. 
 
Even with the bittersweet memories and even with the sting of change, I pray that we can look ahead with great anticipation of the goodness that is surely in store! 
To big white houses, and all they hold; may the coming months create new memories inside walls that are meant for just that.

Tuesday, January 13, 2015

sick girls.

Both of my girls were sick today. 

Nora woke up in the middle of the night with a sore throat, headache and aching body.  She stayed up through a lot of the night, wrestling with herself.

Mabel woke up today with a high fever, 104.2 to be exact.  Both girls started antibiotics and I'm hoping that whatever they have will pass with the help of medicine rather than being the flu and having to just 'get through it.'  Mabel hasn't eaten by mouth in 3 days.  I'm grateful for her g-tube and am reminded that we would be in a much different position without it.

With it, I'm able to keep her hydrated, and nourished right at home.  Without it, we would have no choice but to go to the hospital where other people would be in charge of her care.  I'm just so glad we are in the position we are in. 

It's worrisome when Mabel is sick.  It's stressful, sad and exhausting.  But the truth is I am not worried about her dying.  Death itself doesn't panic me.  It's the idea of the suffering leading up to her death that leaves me with anxiety.  I just want mercy for my girl, and not weeks or months of agonizing symptoms before eternity. 

It's now 8 pm and both girls are resting in their beds, Nora on her ipad and Mabel asleep under her weighted blanket.  This morning when Nora told me how she felt my heart broke that Mabel can't express the same things to me.  I was glad that her sister had a voice and was able to give me insight to how Mabel may be feeling.  Their bond is incredibly unique and extra special.  Tonight before bed Nora said to me, so gently, "You take such good care of us mommy."
I hope she always knows that taking good care of them is all I ever want to do.

Please continue to pray for both girls, that they'll be back to feeling like themselves quickly...
g











Monday, January 12, 2015

love endures.

Yesterday was a profoundly bad day. 
I found myself wrapped tightly in Ashley's arms on the floor, in that same familiar position that I used to find myself in daily when I was knee deep in grief.  Cold kitchen floor, hands wrapped tightly around me knees, rocking back in forth, trying to breathe, trying not to vomit.  Heaving cries of sadness, loss, frustration, helplessness, loneliness, and fear.  Yesterday it all came pouring back over me and in a moment I was wrecked with sadness.
The day was going seemingly fine.  Until then it wasn't.  That's how this goes.
Batten disease. 
A dirty, filthy, sneaky, secretive, looming in the darkness, awful snake.

I hate this disease.  And I've refrained a very long time from saying that because I love her and clearly it's part of her.  In fact, it makes up most of her.  She's her but with this disease and sometimes I can separate them but sometimes I can see only it

Only the suffering, only the seizing, only the shaking, only the coughing, only the fragile, only the trembling, only the God awful crying. 

Sometimes the thing that separates her from it removes itself like a wrapper being caught in the wind from your car and blowing swiftly out into the breeze.  The veil is lifted and the disease becomes visible and the vomit in my stomach rises.  My chest heaves and the fear rises up and makes itself known once again.  "Here I am, time to play."

It's sickening and warped and treacherous.  It's vial and repulsive and grotesque and absurd and what's worse is that she smiles at nothing, oblivious to all that is happening inside of her and what it's doing inside of me. Her love and beauty overwhelm me and the guilt of hating this disease descends somewhere back into acceptance, a loving of her too great for hate of any kind; even for what is slowly killing her. 

After hours of crying and seizing and a fever that eventually spiked high, after medicine that is supposed to be sedating and would be for any 'typical' human being was given, after my breakdown and her breakdown and hours of stress and anger subsided, sleep came in the form of an infant child wrapped up in my arms, criss-crossed in my great grandma's rocking chair, feet tingling from not moving.  Before falling asleep her hand reached for my face and rested there.  I could feel the heat from her fever through her fingertips and I smelled her hands, as usual, smelling of drool from chewing on them all day.  I breathed her in long and hard.  Long and hard. 
But her body never rested.  Seizures continued for what seemed like hours but was truly only one.  I eventually put her in her bed, praying that God would continue to give me the strength to rest myself.  Rest my mind.  Rest my body.  Don't worry. 
What will happen will happen, so just rest.
God please let me rest. 

I did and she did.
Through the night. 
She woke this morning drenched in and wreaking of sweat, still with a fever. 
So far there is no crying.  She has had a bath and is generally happy.  She drank only half of her morning bottle by mouth and Tylenol is keeping her fever low. 

My back and neck are aching from the weight of her.  The constant and full weight of her.  My mom posted a beautiful photo to me on facebook last night reminding me that one day I will miss the weight of it all and she's right.  She's so right. 

And I don't ever forget that.  I look at my dear friends whose children are in Heaven and I am more than mindful that they would give anything for an achy back and one more night rocking an overgrown babe in their grandmother's chair.  I will never forget that.

But I am constantly trying so very hard to be more present; more mindful of the exact moment that I'm in because truly, it is the only moment guaranteed to me.  And it is more than valid that in these moments, I am scared, tired, achy, frustrated, lonely and desperate for relief, not only for my own aches but for her suffering.  One day I will long for the weight of her, I'm sure.  But I'm positive, even then, that I will remember how I longed for her to be free from pain and I will feel peace in that moment, knowing that she is. 
Today's a new day.  It's always a new day.  The sun is shining and the house is quiet.  For this moment, she is calm and her fever is down.  I am grateful for the prayers of all the people who love us.  For the hope that she will pull through and the hope that when one day she doesn't, Heaven is waiting for her.  She is teaching me so many things every single day.  She is the light in this dark and hard world.  It is my honor and blessing to mother her and I am grateful, even for the hardest of days.  But I am also thankful for a Heavenly Father who loves her even more than I do and has a purpose for her life so great that even I cannot comprehend.  Even when He feels far away, His promises remind me that He is near.  He is good and His love endures. 
 
Because of Him, mine does too. 

Wednesday, January 7, 2015

Happy New Year, 2015.

Happy New Year, 2015!
I almost can't believe that Christmas has come and gone and yet here we are, smack dab in the middle of a snow covered January, welcoming all the new that life has to offer. 
 I love the new year.  And although I'm not huge on resolutions, this year I resolved in my heart the promise of 'more.' 
More love, more smiles, more cuddles, more coffee, more dessert, more friendships, more forgiveness, more contentment, more happy, more laughter, more truth.  More peace.  More hope. More joy.
 Our Christmas season was literally magical this year. 
It was full of saturating ourselves in advent, learning more about the birth of Jesus, and wrapping up in the promise that His life was purposed for our eternity.  The kids and I dove deeply into advent devotionals; one we read together in the evening and one that the older kids read together before school each day; a shorter version, a perfect reminder to fuel their hearts. 
 
I saw the two of them light up with understanding this year.  I saw the fruit of my many prayers peel back and reveal itself on their faces and in our home.  There was an excitement about this time of reflection and of giving.  They have matured and are inquisitive about the things in life that are most important.  I am so proud of their hearts.
Hearts that are open and know truth.  It's a beautiful gift. 
 The holiday came with our usual traditions.
We baked cookies and ate the dough.  We made warm bread and devoured it together.  We turned the music up loud and nestled into blankets tight.  We cut down a fresh tree, decorated it together, enjoyed Christmas with the ones we loved, cried for those who are no longer with us and we really focused on the reason for it all.
 
  The kids enjoyed more than 2 weeks off from school and though the house is small, their voices are loud and there were so many hard [frustrating] moments, I really missed them when they went back to school yesterday.  However, both Nora & Braden seem to be thriving on the routine of their classrooms and for that, I'm grateful. 
 This Christmas was probably the greatest I've ever had.  It was calm, light, easy. 
I felt like we all fully enjoyed the days leading up to and the actual day of celebrating our God. 
 So for months I've been without a decent computer, leaving my writing sporadic.  As of today, that will no longer be a problem.  My goal in the coming days is to catch up and keep up here on my blog.  Beyond that, my intention is to begin writing the first several chapters of a book that I hope adequately tells Mabel's story, and the story of our lives in a way that reflects Jesus. 
 
Will you pray for me and for the next chapter in my writing? 
I will write with the hope of successfully publishing a book that my children will not only be proud of one day but that will represent our life through it's challenges, heartache, joy, sorrow, difficulty, beauty and ultimately triumph.  I will write to honor them and to honor Mabel. 
I will write with the purpose of bringing truth and awareness, not only to batten disease and other rare diseases but to the grief and guttural turmoil that accompanies it all, daily. 
 
I am so lucky to have been born a writer, with the gift of expression and intimacy through words.  I have always known that this gift was not meant to lie still on the screen of this blog or the pages of my journals; rather God will use it all to bring glory to Himself and hope to others. 
 
I'm so excited for the many changes that will happen in our lives over this new year!  There are big things in the works for our family already.  There are vacations planned, conferences to attend, teams to join, new schooling to finish, certifications to obtain, choices to be made. 
We look forward with love, knowing that whatever comes is planned and perfect for each of us, trusting God to hold us every step of the way, and we hope the same for you. 

Sunday, November 30, 2014

Parade.

I Yesterday was a warm (for November) winter day.  The kids ran in and out all morning, leaving trails of muddy footprints from the front door to the bathroom.  In and out, in and out.  Snacks, "I've gotta get something," and the occasional, "didn't stop long enough to pee so now I've had an accident." If you are my neighbor, you probably get tired of my constant, "GO OUTSIDE!" "In or OUT!" but it's just inevitable. 

Yesterday was also our small town Christmas parade.  Two years ago, our family was nominated to ride in the parade as the Grand Marshall.  To be honest, that was the last big thing that Mabel's Able has done in our community because it was just 3 months later when our family sort of fell apart and things changed drastically within our personal lives.  I needed a major separation from my persona here, as the writer, and my real life situation.  I took a really long time for myself and backed away from public in general.  But, the parade two years ago, before all of that took place, was beautiful and humbling.  I remember feelings so honored and so proud. 
This year our biggest girl was riding with her Girl Scout troop.  Since Nora still has the hardest time, emotionally, surrounding the divorce and all of the very heavy changes that have taken place, I wanted to give her something that was very much her own.  She played ball this summer which she loved-it helped her to be a part of a team, something bigger than herself.  And when fall rolled around I had a couple of mom's reach out to me and ask about Girl Scouts.  Nora was thrilled.  So far she has sold fall product (nuts and chocolate) by going door to door in our small neighborhood.  Her little redhead would dart from door to door to door, street to street to street.  She was excited which made me incredibly happy.  In February she will start selling cookies and I know she's excited about that as well. 


Krystal happened to be in town for Thanksgiving weekend and I got to spend a few hours with her before the parade.  She and her husband Will are welcoming their second baby into their family in about 7 months!  We are thrilled for them.  I can't believe how much I miss her until she's here in my living room.  We've walked through everything together in this life, that's for sure, and one thing I can say is that her friendship is faithful and loyal. 
I truly do know how lucky I am that I can say that exact same thing about all of the wonderful women in our village.  These friendships are so intertwined, so wrapped up in each other, so devoted to doing life together. 

Miss Audrine adored the parade.  Mostly she jerked and seized in excitement over the fire trucks and the marching band, specifically the drums. She was not, however, a fan of the motorcycles which I know was slightly disappointing to the main man in her life.  If there was a way to strap a large, special needs car seat to the back of a motorcycle, that would be the first thing Chris would do when the time came. 



After the parade everyone went their separate ways to resume their day.  Our family's schedule makes it so that we only see Chris for a few minutes on the days that he works and on school days he doesn't see the big kids at all usually unless it's a day off.  He sees Mabel every day. 

Yesterday I sent Nora with her Nanny and Braden outside with the neighbor kids so I could take advantage of the warm weather and dig out Christmas decorations.  I spent the next couple of hours dancing with Mabel to Christmas music, hanging wreaths just so and filling the scentsy warmers with holiday melts to make the house smell just perfect for the occasion. 
I woke up this morning next to a snoring boy and a tapping girl.  We walked out of the bedroom in search of our famous elf, 'frufert' who has returned from the North Pole for the 4th year.  He is pesky and naughty and fun!  The house was warm, much warmer than the big white house in the winter, the Christmas lights were lit just right and it smelled like Heaven.  It's official, Christmas time is here!

Tomorrow the kids and I will begin doing our advent devotionals and really learning about what took place on the days leading up to the birth of Jesus.  The truth is, He changed everything just by being born.  And whatever you believe during this time of year, whatever religion you follow or don't follow, there is just no denying that it' a magical time.  One of reflection, prayer, meditation, quiet, believing, hoping, loving.  The world just hushes and settles long enough for us to take notice. 
And that's not only special, but necessary.  Looking forward to December with great joy and great hope!