Saturday, November 21, 2015

Doubly Clothed.

The first snow of winter fell this morning.  As I opened my eyes I could tell by the light in our room that the ground was white.  I prepared myself all week, watching the forecast, knowing it was coming.  I thought my heart was ready.  
But when my feet hit the floor and as I made my way to the kitchen all mental preparations were squandered by the familiar feeling in my stomach; the aching one.  It caught me off guard, stopped me dead in my tracks.  Memories flooded my mind quickly and my tears fell quietly, more meek than usual.  This was a somber missing of my girl, not the violent type that I usually feel. 

We moved to this house, our "Mabel house," in the snow.  Feet of it, actually. 
While the kids were in school and while Chris worked, Mabel & I made so many little trips across town in so much snow just so that we could finally have our little family under one roof.  And I remember feeling so much necessity in doing it; an urgency. 
 My soul knew we needed to quickly get her here, to the home where she would meet Jesus.  

Anyone who knows me knows my heart is wrapped up in the winter air. I pray every year that I would wake on my birthday to a fresh blanket of perfectly untouched snow.  The sunshine of summer refreshes my spirit and then I hush, quiet, silence myself in the winter. 
 I am internal and it is soul-reviving.  Mabel and I, especially, would tuck ourselves away for many winter months and do nothing but devour each other's time. 

This morning my mom sent me a text that said, "the first snow brought us you!" which is pretty special to know that I was born in the middle of the thing that I love most. 

I wasn't prepared this morning for this first snow. 
Not for the beauty and not for the excruciating pain atop it.  I wanted so badly to wake and feel nothing but gratefulness for the white; the new.  But it's never how I expect it to be.  Instead I looked across the living room and all I could see was the same winter light that filled the house the first few days we were in it, all together. 

I knew then what is true now-that my baby would not live through another winter, but she was with me then and I remember feeling so elated.  The house was open, but cozy, clean and crisp.  Many days I spent painting the walls with the music up loud and my girl tapping in her seat beside me.  She would giggle when I baby-talked to her and when she recognized a familiar song.  Sometimes, more than anything, I just miss talking to her through my day.  

Facing another season without her is unbearable. 
And I know it's likely never going to get easier.  The finality of death is always the thing that shifts my grief from passive to aggressive.  It's the moment in my day or week or month when the truth wakes me up and claws at me from the inside. 

"My baby is not here.  She won't ever be here again.  Winter has come, time has gone.  She went away with time.  I'm still here and I still have to be alive; moving along in this life with time as it passes.  Holy God.  I can't.  How can I.  I have to.  Oh my God, my baby is not here."

Tears that fell silent this morning were actually very sweet. 
Restrained, but not by me.  Just gentle and earnest. 
I thanked grief & God together out loud. 
"Thank you for letting me miss her without the thrashing today.  I needed the solitude of this snow to be a gentle missing, a thankful reminder of all she was and is."
Chris held me when he woke and I couldn't help but smile and laugh through the heartache. 
There was never a first snow that she wasn't a part of.  She was never thrilled to be getting dressed but always enjoyed the cold on her face once outside. 
  Mabel was part of everything. That's what makes every single thing so unbelievably hard. 

  Having a terminal disease didn't make Mabel sick.  In fact, for the most part, she was healthy.  So I made sure she did life with us. 
And though that sometimes meant we lived somewhat restricted, it never felt that way.  Looking back it doesn't seem that way.  She just went where we went and did what we did.  In her own Mabel way. 

Two winter's ago she went down the sledding hill with her brother, Shawn and Wes; just one of the boys!  Oh how we laughed.  Then she and I ended up in a heated vehicle smiling and telling snow stories in secret.   
Last year she was pulled around the yard by Nora on a saucer sled that she was way too long for in a snowsuit that she had also outgrown.  We all laughed then too!  Oh how we laughed at this little girl. 

I don't know how she isn't here.  It doesn't make practical sense in my mind. 
I can't wrap my head around the days that have passed or how we ended up here without her.  They swarmed by so quickly as if stolen from me. 
{Shock is a beautiful and terrible thing; much like grief itself.}

Some days I wish to stay wrapped in the blanket of the literal, physical shock that takes over after loss.  I don't want to ever come out of the fog and re-enter reality.  Like now, for instance.  I wish more than anything that I could stay snuggled beneath it like the warmest winter quilt and burrow there safely through the holidays (like I used to do with her). 
My birthday, thanksgiving, Christmas, New Years.  All of these things are compounded into two months of moments that I'm trying desperately to turn from traumatic into very hard thankfulness. 

But I don't want to live in denial. 
I have felt such an evident peace over the last 6 months, even on my hardest days.  There is always this small voice of God that is yet louder than any other thing, reminding me that He is here and He has her.  He always has and He always will.  He has not left me. 

There's also joy. 
There has always been joy.  Even in the moment that she took her last breath on my chest-I felt total, consuming joy as she entered eternity and left me behind. 
Joy for her, joy that we had this journey together, joy that one day I will see her again. 
And there is still joy today.  In the saddest, most caught-off-guard moments, I can still see the whole picture here.  I can still see the goodness that our God has in store and all that He has done. 

The joy, the hope, the treasure in Him. 
That is how these snowy days and sunny days and hard days and normal days don't just swallow me up and fully consume me.  But I can say for certain that winter is going to be brutal for my heart.  I can tell now and I know I'm not really ready.  Though, as ready as I thought I was for any this, I could never fully have been.  She was my baby, after all. 

I am thankful that she went to Heaven in the middle of sunshine and summer heat.  I hope that when I feel the familiarity of that season once again I will know that I have walked through the worst pain imaginable and survived it.  I pray that it serves as a reminder that I can live through anything. 

And next year, when the first snow falls, I pray that it will naturally remind me that even these moments are survivable. 
I pray that the sting will be from the unmatched beauty of it all: 
The joy, sorrow, life and death-because it is all grace. 

"She is not afraid for her household when it snows, for all in her household are doubly clothed"
Proverbs 21:31

Let us be doubly clothed in you, Lord, all winter and always.  

Monday, October 26, 2015

of grief and grieving [pumpkins]

I was up alone and in the bathtub when I heard the door open.  It was late and everyone was supposed to be asleep.  We had a busy day, carving pumpkins, going on our annual 'boo at the zoo' trip, and stopping at IHOP for pancakes past bedtime (on a school night.)  I was exhausted and so were they. 
Two nights ago I was home alone for the first time past dark since Mabel died.  The house was sickeningly quiet until the unrecognizable but familiar groans rose from deep in my belly. The sounds that escape me in those moments of grief are terrible, even to my own ears.  Before I knew it moments had turned to hours.  I flailed, stomach churning, and wandered aimlessly through the house where her absence is just too heavy.  I want to claw at myself, at her blankets, at anything to find a piece of what I'm missing.  But what I'm missing is her; never to return. 
I look toward her corner and the sadness is far too invasive.  She's absent.  Gone. 
And in these grief moments, and basically every moment in between, the magnitude of that reality is so wrong. 
So as I heard her enter the bathroom last night, I knew that her time was coming.  She had watched her brother weep for his sister the night before while away from home.  She had been strong all through the day as we went through the motions of some of our family's fall traditions;  rituals that we have always shared with their sister.  By the sound of her footsteps alone I knew that my girl was about to come undone in the missing.  This happens less frequently than I originally thought it would; with all of us actually, but when it does, it is a desperate and unimaginably painful experience.
For she and I.

A few minutes later, back in her room, I laid beside my oldest girl and held her shaking body.  And there it was, the hell that we all work so hard to squander most days, just trying to survive-escaping from the very pit of who she is.  They come from somewhere other, these sounds of mourning.  Somewhere that most people don't even know exists.  It's this burning from deep within that is like actual fire to the bones.  And I watched her face as the disgusting reality bit her lips and they quivered at the knowing. 
"I never even got to hear her say she loved me.  I never got to play with her like a normal sister.  I cannot wait until I can do that with her one day when I see her again.  Today was a hard day mommy.  I didn't know it would be so hard but all day I felt it.  I miss her so bad."
I didn't know it would be so hard either.  I expect it to be but then I find us in the middle of our ordinary, normal routines and watch closely as I think we are all doing just fine.  But I should know by now; none of it feels right or ok.  We get through it because we feel like we should and because we don't know what else to do.  Are we going to simply do nothing because she isn't here or are we going to move along with life; with one another and try to expose that joy that is buried beneath the sadness?  I think every one of us wants that to be what we choose and that is why we, without question, carry on with the mundane chores of life along with the traditional things that have always brought us so much happiness. 
It's just that now, they also coexist with a whole lot of sadness.  A whole lot of loneliness.  A whole lot of missing.  A whole lot of heartache.  A whole lot of absence. 
This little girl was part of everything we did. 
Every game we attended, she was in tow.  Every pumpkin we carved, she observed from her seat beneath us.  Every thanksgiving dinner we had, she was crying or loudly 'talking' in the background.  She was at every 'boo at the zoo,' dressed in an obnoxious costume that I picked out and put on her (and she almost always hated it.)  She was in every photo shoot, at every mall trip, was with us for every van ride to look at Christmas lights.  She was with me every day, hot or cold, taking the kids to school.  She went trick or treating, egg hunting and hay rack riding right alongside every one of the typical kids in her life. 
It was a difficult task to include her in those things, especially as she got older, longer and weaker but we did it. And I know that not only her siblings but all of her tiny friends and cousins feel that loss more strongly than they'll ever be able to explain.  But I also know they wouldn't want it any other way.  Her presence was more important, more valuable, more life lasting than her absence.  The memories of Mabel beside them-screaming or not- means everything.  
Oh, my oldest girl, I just can't explain the heartache she carries.  I can't explain it because I simply don't know it.  I have my sister and my brother here with me on earth.  Every day I know that I am lucky and I try desperately to not take it for granted. 
Both of the kids have a deep understanding of Mabel's eternal healing.  I hear them talk of how they would never want her to be suffering in the ways that she was.  But on the other side of the token, they wish her here so badly.  And I get it.  I miss her, medical complexities and all, because that is who she was.  Sometimes it doesn't feel like she was suffering because she was loved so recklessly by all of us.  But just like I have to do with myself, I walk them through it and remind them that her earthly body was insanely flawed and not only did it fail her every day, but it was literally harming her. 
My daughter's body rejected itself time and time again. 
And then Mercy revealed Himself and called her home. 
She isn't here and she won't ever be again. 
These are the facts that swarm our minds and feel like open, gaping wounds to our flesh in those moments that overtake us. 
 Our grief-all of our grief, it is so raw.  It is so afflicting.  It is all consuming.
Day to day, we really do ok.  We are functioning and surviving and even finding true joy in the midst of it.  But in the most unexpected moments, at the times when we are least prepared, grief wakes in us and he can be a true monster. 
I would have loved to write all about how beautiful yesterday was with the colors of fall all around us as we carved pumpkins on our driveway, did projects for school, and dressed in our costumes for the first time this year.  Instead, all that I can share is the late night wails of a sister who's heart was tormented by those very things.  And all I can do while she moans in agony is hold her tightly and remind her that although not the same, I really do know. 
The loss, the pain, the sorrow and anguish.  I know, and I too lash and wail at the missing. 

This week was awful for me as well. 
I walked many miles through the town as I usually do but all I could feel was mourning.
  The colors are too vibrant, the air is too crisp.  It all feels so perfect and yet, perfection met Jesus almost 5 months ago.  Our hearts and our home are changed forever and the reality is unshakable.  I'm almost ready to welcome winter so I can get past these autumn months-the months that she and I shared so purposefully together. 
I held Nora tightly until her body stopped shaking and instead began to jerk as sleep overtook her.  I watched her and silently asked God for continued comfort.  His peace covers us daily and these moments are likely never going to end. 
How does one cease grieving? 
So as long as we are alive and missing our girl, I will be near. 
I am positive I'm getting it wrong in a lot of ways, in many moments, on most days but I know in these times-the critical occasions when they need to be little and need to feel all that consumes them, if I am near there is no way to mess it up.  We will get through it together. 
"Deep grief sometimes is almost like a specific location, a coordinate on a map of time.  When you are standing in that forest of sorrow, you cannot imagine that you could ever find your way to a better place.  But if someone can assure you that they themselves have stood in that same place, and now have moved on, sometimes this will bring hope."
--Elizabeth Gilbert-

Monday, October 12, 2015

World Hospice and Palliative Care Day [oct. 10, 2015]

[on this day of appreciation for hospice care workers across our country I wanted to share the letter that I wrote to our great team of nurses and doctors just three weeks after Mabel died...]

To the OSF hospice team,
I wanted to take the time to write to you and extend my sincere gratitude for all you did to help me in Mabel's care during her short life. 

 Mabel Audrine was 2 1/2 years old when I enrolled her in hospice after a diagnosis of a very rare degenerative brain disease called NCL, or better known as batten disease.  Because it is so rare, Mabel had symptoms so young, we had tested every gene and still could not figure out which one was disease-causing, and her specialists knew so very little about it to begin with; they led me in your direction. 

 By this point in her life, comfort care was already incredibly necessary.  Mabel's brain quite literally rejected itself and her body daily.  Batten disease caused her to have seizures 80% of the time, constant jerking movements, excessive and excruciating screaming that would sometimes last for weeks; she could not eat, sit, or see.  Her brain was actively shrinking, as were her muscles and her body could barely sustain itself. 

 I will never forget the first day that OSF entered the picture for us.  Immediate relief came in the form of a medication that other doctors had not been willing to give based on the goal of treatment rather than comfort.  Making the mind shift to comfort care came easily for me as soon as I received her diagnosis, which is actually when I was filled with incredible peace.  Mabel had been screaming for 3 weeks to the day when a soft spoken, tall nurse named Michelle entered our home and made the call that changed everything.  I will forever feel grateful to her for that. 

 For the next 2 years and 5 months we had two main nurses who cared for Mabel.  Jason and Michelle not only loved her but they gave her the kind of exceptional, incredible, inspiring care that I hope all healthcare workers would hope to achieve in their careers and for the hearts of their patients.  They listened to me, as Mabel's mom and trusted me.  And I learned very quickly to do the same with them.  We depended closely on each other to get our girl through the very difficult days of her short life.  The bonds I formed will literally be lifetime friendships but more than that, Mabel was blessed beyond measure to have felt the kind of love and devotion that she did from these two beautiful humans who saw her more frequently than even some of her own family. 

 I always understood that Mabel's 'case' and our situation was unique to the hospice team.  With a diagnosis of batten disease, and with very little research about what type she may or may not have, we were always uncertain how long Mabel would live.  But through research and by asking questions of other rare disease families, I learned that it is not so uncommon for our children to live on hospice for years at a time, receiving the kind of care that only you can provide for our kids. 

 I have said it all along and will continue to say it forever:  It is without a doubt, the greatest decision I have ever made as a mother to enroll Mabel in your care.  We were not always able to bring her absolute comfort.  We were not always able to calm her body completely.  We were not always able to get her to rest or to sleep.  But what we were able to do was try.  There were phone calls made, hugs given, tears shed with a team of people who wrapped me up tightly in their arms and promised that I wouldn't have to walk this alone.  And from the day that I signed the paper work to this day, 3 weeks after her death, I can say with certainty, I never once was. 

My prayer is always that a healthcare team would never come face to face with batten disease or another rare disease like it.  My hope is truly that.  But I pray if that is the case and you experience having to care for a precious child like Mabel in the future, that the family would feel as surrounded, loved and taken care of as I was. 

Dr. S, thank you for your patience, understanding and genuine empathy.  Thank for going above and beyond in the care for my daughter.  In the end, it meant everything to me. 

 The days leading up to Mabel's death were emotionally exhausting.  Batten disease causes a build up of waste in the muscles, eyes, and brain.  If not disrupted by pneumonia or other common illnesses that steal a child's fragile life first, batten disease eventually shuts down parts of the body one system at a time.  In Mabel's case, her stomach stopped working correctly over a period of about 12 weeks and eventually shut down completely.  When we realized that she was not absorbing any of her food, or medication and were certain that her liver had also shut down; it was within 24 hours that Mabel left my arms for the arms of Jesus. 

 We were in the comfort of our own home, surrounded by our family.  We had time to prepare, surround one another and console each other.  We were able to hold her, sleep beside her with no machines or the noise of a hospital staff.  We were given the ultimate gift of time, comfort care and essentially freedom to usher our child into Heaven the way we believe was best.  And that is a priceless, limitless gift given to us by your team. 

The jobs that you do, the people you encounter, the stress of every day; I can only imagine how difficult it all must be.  But when you feel disheartened, weary, or frustrated in it all, please think of my beautiful girl and know that it is absolutely worth it.  Without you, our lives would have looked incredibly different and I'm forever grateful. 

 Thank you for the long journey you endured with us and for us.  Thank you for standing in the gap for our family in a time when other doctors didn't have the answers.  The only answer that I ever needed was a way to provide as normal of a life for Mabel as I could give her and you helped me to do so.  She was loved every single day in a way that I can never explain.  She deserved the very best care and I always knew that as her mother, I was the one who could give it.  You helped me to do so and that is something that I can't thank you enough for. 

 With all of my heart, thank you.  I appreciate you all.  There is such purpose in the gift of what you do for families like ours. 
With Love,
 Mabel's mom, Ramee Larson

Tuesday, October 6, 2015

sports & such

Our every day life, though different, is evolving.  It's strange to say so but we have no choice.  Their sister is gone but their life must continue.  So many times every day they remind me how difficult it is for them to face.  They miss her so badly.  And just like for me, when anything at all makes them upset or sad, even if unrelated to the death of their sister, they spiral into an oblivion of emotions that are hard to contain.  It becomes harder and harder to crawl out of the pit. 
It took us well over a year but we finally convinced Braden to try a sport. 
Time and time again we were told by people who were less than involved in our every day life that the kids needed a healthy distraction from their sick sister and the environment in our home.  What people didn't realize is that a distraction from her was the exact opposite of what was needed.  They were involved with her care, spending every minute they could with her. 
The one and only emotion that I have not heard either child speak about experiencing after Mabel's death is that of guilt for the days they spent with her.  They cannot look back and regret not spending their time with a sister who is no longer here and I'm so grateful.  She was with us, always.  They were with her, always.  What a gift!
But she is no longer here and we do want to move forward.  It is time to rehabilitate their lives in structural ways that make sense for them. We are fousing our energy on learning what the kids enjoy and guiding them toward those activities.  Braden is fast, runs nonstop and is light on his feet.  Soccer seemed like a good fit. 
And we were right; he's loving it.  

And though I always said I would 'never be a soccer mom.'
I've truly learned to never say never.
This child made me a boy mom.  Chris somehow made me a soccer mom.
And even on cold, early Saturday mornings when it would be easiest to stay in bed and sleep in, I have found the energy [and right amount of coffee] to really enjoy the art of the game.  
The kids are also really enjoying school.
Nora has said more than one time how much she loves her teacher.  And Braden's teacher is the perfect fit for him.  They wake up, get ready without a fight [usually] and head out for the day.  We walk from home to school most mornings, giving us extra time together to talk and pray.  Some days Nora doesn't make it in the door, as she gets anxious and overwhelmed.  We turn around and walk home, arm in arm to spend the morning crying and comforting.  My oldest girl misses her baby in such deep ways-ways that are not mine to tell. 
 It's heartbreaking that this is their life; their story.
Their sister died when they were 8 and 7 years old and they have to live the rest of their lives never seeing her again.  I can't even fathom, as a sibling, how awful that must be.
They are both so brave.

Nora's newest hobby and obsession is mastering the art of cartwheeling.  She has practiced a trillion times each day until she's gotten it just right.  She isn't quite as limber or nimble as her brother and doesn't seem to be as agile as I once was.  By her age I was already flip-flopping with Lindsay around the playground and spent most of my evenings practicing in the yard at Nanny & Pawpy's house.  But she is determined and has worked so hard and she finally agreed to start in gymnastics.  So we are excited at this next chapter for her as well and what it might bring.  Her confidence is so cute, though all the flipping through our little house-not so much.

Yesterday we collected leaves for Aunt Jeni's wedding, driving through town and searching for the prettiest autumn trees.  Everyone is so quick to clean their yards, bag up the colors, but we found just the right amount to fill the bags for her big day.  This time next week I will have a brother-in-law and a new chapter in life will begin for my sister.  It is a joyful season, indeed.
But bittersweet, as usual.
This new season is the first we've experienced without our girl.  Her breath still met our air at the edge of summer.  Yet here we are entering a colder season without her.  Sometimes I can't believe it, like when I find myself driving to the place where she is buried and realizing that is what I'm actually doing.  How did I get here?  Where is she?  When did this happen?
I'm actually living out the thing I feared and anticipated for so long.  The grieving when she was alive was so intense, so overtaking, so nauseating that sometimes this grief feels like a relief.  The absolution of her life and finality in her death have brought a sense of peace, taking away the worry and pain of wondering when and how it would in fact, occur. 
But this missing, that is a whole new emotion.  Something that words will never fully depict.  I run miles and miles every day, trying to outrun the pain.  Or outrun my exhaustion.  Or exhaust myself.  I don't know why, really.  It's a good distraction I suppose.  A distraction from a life that is mine and no one else's.  I was her only mother.  This is only my pain. 
That is so isolating sometimes. 
But then I see these two beautiful kids in front of me, no longer babies, and I refocus.  I focus on their pain, their agony, their anxiousness and worry.  I refocus on what's important for them and the isolation is lifted.  It is not lost on me that the two of them grew up in front of me without me knowing it.  I didn't have a choice but to care for their sister and I was determined to always do that in the very best way that I could.  But in doing so, I lost many conversations and many moments in their childhood that I could have otherwise shared with them. 
But I remind myself that many parents miss those things anyway.  We are part of the parenting generation that seems to be the least engaged.  We tend to be consumed with our phones, our jobs or our own desires and alot of times we no longer take the time to truly see our children. 
 I can say, at least for myself, that has never been the case.  Even in the midst of caring for Mabel, I still saw them.  I was still here with them every single moment of every single day.  I have never been distracted by anything that wasn't worth my distraction.  I have always been right here with them.  Sometimes fully present.  Sometimes not.  But always here. 

I see them now--more clearly than ever.
I am, now, just as I was in the beginning of this mothering journey-raising redheads.
It's terribly repugnant to think that this new phase of our lives is not really a phase after all.  It is simply that which will be lasting-life without Mabel. 
But we are doing it.  We are alive together and living.  It doesn't quite feel right just yet.  It's a little unnatural.  But slowly we're all filling the roles that we were created for within this family and figuring it out together.  That's most important.
And I'm really proud of all of us.  

Monday, September 28, 2015

tomorrow {1/3 of a year}

Tomorrow when I wake it will be four months since I've held her. 
And I don't know how that is possible.
I can't fathom it.  I'd rather vomit than write it. 

 {This week Abrian found photos of us together on an old phone that I hadn't seen before. That was such a gift for me!}  
Tonight brother is sleeping in her bed.  I love when he does that. 
One thing that has been the hardest for me in the last four months is turning off the hallway light that is in front of her door.  When she was alive, I left it on so I could see her while she was sleeping and so that she could see my shadow if it passed before her.  It was one of the first things I had true anxiety about.  Every night I feel overwhelmed by it; like I should turn it off but don't want to.
And can't.
So I don't. 
The same bulb has been on for more than 4 months.
Each month I seem to have one extra terrible day. 
I writhe and puke and cry for hours.  I exhaust myself with every grieving, weary bone in my body, as if to purge all of the pain so that I can withstand another day, hour, week, or month without her.  How am I going to do this; live without her? 
This entire week was awful for me. 
In all of my research and with each personal connection I've made, it seems as if grief gets worse beyond this point.  That's terrifying. 
I miss her so badly.  It's as if my whole body is fractured from the loss of her.  The break is one that lingers and oh, it aches deep when the weather changes. 
 I sink into it and feel every single movement, limping with such lethargy that I can hardly stand it.  It's unbearable at times.  Actually and utterly unbearable.
I finally got an MRI of my back to see what was causing such intense physical pain.  The results showed some things that could be the cause of some of it, but ultimately, and likely-
grief.  sorrow.  anguish. 
Five years of pushing her stroller for hours at a time; five years of carrying her the same. 
This last year, especially, her body was so long and she was incapable of supporting herself in any way.  I know now that my posture was incredibly altered.  Likely I didn't recognize the amount of stress and pain my body was in until I was forced to focus my attention on it. 
Which just makes me more sad. 
I'm tortured by the amount of suffering she endured.  In all of the world, no amount of comfort measures were ever enough.  You can only give so much, do so much, be so much.  And nothing we did ever truly touched her pain or eased her body's torment.  In this lifetime, on this earth, my little girl's disease won out most days.  Batten disease tortured her with every movement, seizure, swallow and cry.  It was completely repulsive.
She, on the other hand, was incredible. 
Everything about her was so intricately beautiful and perfect. 
And yet...batten disease. 
So since finding out that my back is, in fact, not injured I have put more emphasis on strengthening it in the right ways.  I've started classes at the Y again and feel much better overall.  Getting back into an environment that I love has helped and the people that go are many of the same people who attended the classes I taught years ago.  They are encouraging and empathetic and have the same goal that I do; overall wellness.  The connections that I continue to make are vital and I'm thankful that I pushed myself to try.  Though, this week I cried through several of the classes, walking to and from the building and continuing throughout the days, I do feel stronger.
I'm trying to remain focused on all of the spiritual things that I have learned in the last several years and not push myself into anything that is distracting or that causes me any added stress.  At this point I am still very much trying to decompress, breathe, and just be. 
Just 'being' without Mabel is exhausting, terrifying and so very sad. 
 I feel like I'm doing really well most days by functioning (walking the kids to school, working out, cleaning the house, making dinner, doing homework) but some days I feel like even that is complete overload.  The amount of energy it takes for a person's body, mind and spirit to truly and effectively grieve is incredible.  
Exactly one month after Mabel died we went to pick out the details of her monument. 
This week we found out that nothing has been accomplished or even started on it. 
That alone sent me into total despair. 
Serious desperation. 
 I felt so proud that I mustered up the courage to go so soon after she died, but only with the hope of having it finished by fall or at least before winter.  If I would have known that it wouldn't be done by now, I would have maybe stayed in bed on that particular day and left the hard stuff for another time. 
It was important for me because it truly was the final detail that I needed to accomplish in order to know that I had done absolutely everything for our girl.  And it was important to me that it was not only taken care of but handled correctly. 
Disappointment in the midst of grief is possibly an emotion that deserves a new word altogether to describe it. 
So this week I had to go over those details again, with someone new. 
A chapter that I thought was closed reopened this wound and left it gaping. 
Grief makes you feel as if you are never healing.  With each new day, there is something new to remind you of this horrific loss. 
My baby. 
Luckily, the stone will be finished in just a few short weeks. 
Everyone pulled through for me like they always do.
Relief and gratitude.
One thing that I have noticed lately is people mistaking my sadness or missing of Mabel with lack of faith.  I don't ever need to defend it but let me assure you that grief is not the lack of faith.  Sadness, depression, anxiety, missing-none of these have anything to do with what someone believes in.  They're simply emotions set forth by circumstances that make us human. 
I do not doubt God. 
I am not angry with Him, displeased by Him, or indifferent to Him.
In fact, I am more in love with Him than I have ever been.  I have seen His mercy and majesty in ways that most never will.  I am thankful for His presence and His truth.  I am thankful that there is a God who loves us so much that He provides a hope; an eternal home of rest and freedom. 
 I plan to share about all of His goodness in our lives. 
About how He showed up in the most intimate and personal ways through the death of our precious girl. I will write about His unending love and of the intricate details that reminded us every step of the way that He, indeed, directs us in it all. 
Behind the scenes and late at night- I am plucking through, writing the really hard stuff so that when this great story of love and life and death and truth and suffering and triumph is published one day for the world to read, it will do nothing but point back to Him. 
In the meantime,
"leave the bereaved mother to her grieving. 
She is the woman standing in front of you at the checkout line on the verge of tears because she just dropped the jar of pickles,
the cashier who seems she could care less about her job, but had to return to work much too soon after her loss,
the woman who cries in her car because everyone in real life has grown tired of trying to ‘fix’ her pain,
the woman at the altar, praying a broken prayer through tears and running mascara,
the woman who wonders everyday if she will lose her other children too,
the woman who laughs to hide her pain,
the woman who hides in the bathroom at social events because something about trivial conversation is nauseating at best,
the woman who no longer recognizes herself in the mirror,
the woman who strangely feels empty and empowered all at the same time,
the woman who feels like she can conquer the world, because she’s got nothing to lose,
the grandmother who shares her losses with you, only after you’ve lost a child,
the mother of young children whose hands are constantly full of cheerios, goldfish crackers and dirt, who is always being told by others how full her hands must be, but thinking to herself not full enough’.
the woman ‘addicted’ to social media because she has finally found a community that understands her pain, and her new normal,
the woman you don’t recognize anymore,
the woman who is dancing and singing out loud, not afraid to make a fool of herself,
the woman who looks broken even when she’s smiling,
the woman who wears her heart on her sleeve,
the woman who bears her grief silently, and puts on a mask for her outside world,
the woman who can’t seem to put two sentences together,
one of the bravest women you will ever encounter.
The bereaved mother has lost more than most people will lose in a lifetime. Consider her pain, speak gently to her, and know that grief changes you for a lifetime.
The bereaved mother is all around you."

Friday, September 18, 2015

this is grief.

There is a blue ink pen in a corner on the floor of the kitchen.  It has been there since Mabel died and I can't bring myself to pick it up.  I sweep around it day after day, noticing it but never bending forward to move it.  Likely someone will do it for me now that I've mentioned it and it won't bother me when they do.  It's just something I haven't been able to do myself. 
I walk in and out of her room constantly. 
At first I thought I may keep the doors closed on hard days but I quickly realized that every day is hard so that seemed foolish.  The doors have windows on them; a true gift when she was alive, but now they only seem to taunt me as I open and close them to vacuum.  At some point in every day the cat lays on her bed in the place where she used to sleep.  Surprisingly, it brings me some comfort but I find myself eager to straighten the bed once he has moved.  I find myself doing it nonchalantly many times throughout the day. 
We haven't moved a thing.  In fact, Chris made it very clear that he's more than fine with her room staying exactly the same forever.  Both kids have expressed the same.  So half a package of size 3 diapers still lay stacked in the tidy bin next to her bed, along with extension sets and syringes that my friends left behind after making their sweep through the house to purge medical supplies quickly after she died. 
I remember making it clear that I wanted her food and medications gone from the house quickly.  I couldn't stand the thought of having to see them, and honestly I would have wanted it all gone sooner if that had been an option.  To me her food did the opposite of nourish her in the last few months of her life and her medicine was always ineffectual.   But I can't lie and say that I haven't wanted to smell her grape flavored formula or that I haven't opened the cabinet where her medicine used to be and stood quietly, blankly staring into the empty space that now stares back at me. 
Again with the mocking.
God, what I wouldn't give to sit and write a frivolous blog post about the morning fragrance of my home in the fall or the vibrancy of a simplistic life. 
Rather, I sit to type and can't help but recall the smell of death on my baby's breath just three short months ago and the way it felt to hold her hot, feverish body just hours before her last breath escaped her.
  What I wouldn't give to be able to go to my yoga class and not spend the entire time that should be  dedicated to quiet and meditation sobbing hot tears.  Because instead of appreciating my body for all of it's capabilities and being grateful and accepting of where I am, I feel sorry for the suffering she endured in hers.  I have yet to feel anything other than ache and anguish deep within me physically. 
I had to pick Braden up from school today because of a belly ache.  He called from his teacher's phone...again.  The teachers are being incredibly patient and I'm so grateful but there is just no one who can understand what it looks like in our home from day to day.  I can almost visibly see the edge that we're all walking on; missing her, longing for her, coming out of shock, leaning into a new normal because we sort of have to, but not at all wanting to. 
It's nauseating for me to look at their faces and yet not be able to remotely comprehend their pain. 
I, her mother; they, her siblings. 
None of it makes sense without her here and they know it.
I did manage to pull out of fall decorations last week and Braden seemed excited.  It was mindless, like everything lately, but I felt accomplished in trying.  As I was going through boxes I came across several crocheted bonnets that granny had made for Mabel that she always wore in the early fall.  I smelled them, but nothing smells like her.  I inhale deep, almost holding my breath just for the scent of her but it's useless. 
She's not here, I constantly have to remind myself. 
Chris has been gone all week and I've done my best to stay away from the house as well.  I had no idea how hard it would be to be here alone without him.  I don't know what I expected but it has been completely overwhelming.  Emotionally I did really well.  I kept myself busy and have been distracted and just plugged through.  Today, though, I feel exhausted from just trying and am relieved he'll soon be home.  We're clearly grieving with one another more than I even realized. 
I sat down at my computer last week when I was up late alone and tried to begin writing Mabel's story. 
I started from twelve weeks before her death because that is when we had a distinct moment that changed everything for all of us.  A seizure like Chris and I had never seen overtook our girl for several minutes and honestly, it was horrific.  I would rather live the day of her beautiful, peaceful death a thousand times over than even one more second of something like that. 
It was terrifying and life changing and we both knew it. 
But as I sat to write, the details consumed me and I couldn't put it all together and nothing made sense.  I was unnerved and distraught and I let it overtake my mind. 
"It's too soon," I reassured myself, "and that's ok."
I gave myself a few days and let my spirit settle.
  I have to remind myself that people do not just become writers.  Being a writer is exactly like being a musician, an artist, or even an athlete. 
You either train and practice all of your life with all of your heart to become one, or you are born one; with the natural talent, gifts and capabilities to see it through. 
Since the time I was old enough to hold a pen, I have been a writer. 
And then God gave me a story. 
 It is one that I know is meant to be told and heard. 
 It's gritty, tenacious, sad, joyful, victorious, beautiful, messy, true, and perfect.
And also, it is ours. 
Only ours. 
I am truly the only one who can write it because I am the only one who lived it.   
So I just keep praying that God would give me not only the wisdom, courage, and strength to write the words but that I would be sensitive to myself in doing so.  That I would be patient and gracious with myself in this grief and that when life carves out time for me to devote only to writing her story; His story, I would be in tune to that and set my focus on it. 
But not until then.  Not until I'm ready.
For now, I can't even pick up the blue pen in the kitchen...and that is ok.
I cry fast and hard through yoga class and that is ok.
I straighten her bed and smell her hats and stare into empty cabinets and am just surviving and that has to be ok. 
  The human that I am at this point is very robotic.  My new schedule is helping and I find myself mostly looking forward to the predictability of each new day.  I think this is all very normal and I'm proud of myself in the moments when I feel true joy and even when I feel complete and utter despair.  This helps me remember that I'm alive and surviving.  This helps me know that sometimes getting through the day is all I can do and though I often feel like the shell of my former self, there are still many moments of authentic emotion. 
This is grief. 
Jumbled, disarranged, and often consuming. 
To read other stories of life, hope, and grief, please visit my friend Michaela's blog series, titled "This is Motherhood too."


Saturday, September 5, 2015

8th Birthday In Photos.

We celebrated our birthday boy last weekend with a special party.  He had no idea what it was going to be but his excitement always make it all worth it!  Here's a look into our day in photos...