Saturday, July 2, 2016

summer change.

My kids are rock stars.
They are the kind of humans who wake up, do awesome things just by being alive, cope with heartache, look stunning, and give back to others.
They are the kind of kids who don't deserve to be hurt (because what kids do?) but keep, somehow, getting slammed by every little possible thing in the world that could destroy a person.  They endure loss after loss, time after time and do it with a whole lot of grace.

And I help them cope with a whole lot of grit.  
I hope that when they feel the loss of someone they love, even a friend, that they understand that the depth of that loss is the price of love.  And loving deeply is always worth the risk of someone walking away or being taken to soon.  

I read a children's book recently that talked about death as being a constant companion in our lives, even as young children. 
Essentially the philosophy behind the book was, if we can imagine death as a being; one who walks with us, eats with us, ushers us to school, follows us back home, sleeps with us at night and rises again at our side the following morning, then maybe just maybe death doesn't seem so scary when death actually, finally ushers us away into the air for good... one day.
I loved the book and think the kids would like it too.  
Death and life, the constant pull between the two--it is just as it is with light and dark, happy and sad, hungry and full.  
Every part of it is meant to be explored and felt in order to carve out from within us exactly who we are meant to be.  
This week my kids experienced yet another really traumatizing life loss; another drastic change.  
Sometimes the loss of someone who is still alive is much more painful than a death, especially the death of a very sick sister who we now believe is well and whole.  

There isn't much closure when people who are alive change the course of your life and many times, there is nothing you can do about it.  Over time, I have learned that the only thing I can continue to do is support the kids through these changes and explain to them that people will always, most certainly, make choices that impact them.  In doing so, I hope that I can encourage them to think through their decisions very carefully.  More than anything I want them to grow up and lead lives of selflessness and service to others.  
---
Summer days are quickly sneaking by.  We are swimming, napping, and eating popsicles like it's our job.  We are also anxiously counting down the days until we leave for our family vacation in Northern Michigan where we will spend 2 full weeks with Chris' family in the farmhouse where dreams come true.  

We are aching for Mabel, as we always do.  
I checked the date on the calendar that holds our busy schedules and as I realized that her (and Nora's) birthday month is here, I also realized that I'm doing ok.  
So So.  

It feels like another lifetime that I lived with her.  It feels like I just held her in my arms.  Sometimes it feels like she's just laying in the other room and I haven't gone in to kiss her just yet.  It's still, and maybe always will be, a bit of a trickery for my mind to establish that she really, truly is not here.
---
I have decided to take a break from working for awhile.  I have signed off of facebook (possibly for good) and have made some other life choices in the past week that will hopefully help me de-clutter my mind and decompress my heart.  This grieving business is not for the faint, though...
we do all have to do it in one way or another.  
And sometimes many.

As Nora and Braden begin to grieve yet another part of their life, I wanted to be fully available for them in whatever ways they need me.  As yet another friend grieves her marriage and adjusts to her new normal, I wanted to be available for her as she walks through that.  
I have never, not ever, had to do any of this alone and I will not be so preoccupied with other things, that I am not wholly myself in giving to others when they need me.
It's just who I am.  
All I really have to give is more of me.   

This weekend we will celebrate our country and all the freedoms we enjoy.  
I'll do that with my friends, and family and I'll give thanks for all the many blessings I have been given.  I continue to be in awe of God for the way He works in my life.  He is incredibly patient, mindful and good.  
I'm praying comfort over the hearts of the people I love who are hurting, and that includes you, if you are.....

Friday, June 3, 2016

Batten Disease Awareness Weekend: siblings.

Today we head into batten disease awareness weekend.  
Over the next several days, my entire facebook feed will be full of heartbreaking statistics, beautiful, life changing photos and a sense of sadness and pride that resonates loud and clear for those of us who have walked or are walking this journey.  

What most people will not talk about is this:

My two "unaffected" children.  
Mabel's siblings.
The one's who are healthy.  The ones who beat the astonishing odds and have the chance to live.  
Each of them had a 1 in 4 chance of being affected by batten disease, the research says.  All the while, we had no idea.  

Here's the thing, though.
They are affected and they did not beat the odds.

These are two children who we say "get" to survive but may feel as though they "have" to go on without her.  That's a huge burden for these little shoulder's to bear.  

They are the one's with survivor's guilt and unknowns.  They are the ones, even at 8 and 9, who question with hushed cries why they are here and why she is not.  
What is their purpose? 

They are the children who were used to caring for her and now have to find their way in a world that seems so trivial compared to that responsibility.  Learning to behave like other kids their age sometimes presents it's own challenge.  And honestly, it's heartbreaking to watch them find that balance now.  

They are the kids who go to bed with her blankets at night and wake up with longing in the morning.  A longing that never ends.  It's there, beat beat beating in their hearts constantly.

 Their peers wake up excited for summer play dates while the two of them dread what emotions the day may drudge up.  

These are the children who are already learning their own grief triggers.  They recognize what 'hurts their heart,' and express it.  It's incredibly wise and sometimes I'm envious at their capability to do so.  
These are kids who learned really well how to answer people when asked about their special needs, terminally ill sister and who do the same when asked about her now.  I hear them telling people in regular conversation, "our sister went to Heaven."

This is their life.  No matter what happens, it is part of their story.  It has a huge role in making them who they are and who they will become.
They are not unaffected.  They simply do not have batten disease.
And boy, I am so very grateful.  Because the statistics that I want to share, that I will desperately, always share are horrific.  And heartbreaking. 

These children DO get to live.  They will not go blind or spend their life eating through a tube or seizing until their body rejects itself completely.  At least, not at the hand of batten disease.  

They will get to live and play and breathe and sing and talk and kiss and love in ways that their sister did not get to experience.  And with all of those amazing and wonderful gifts, my only hope is that every single day they use their abilities in this life to do good things.  
To be good humans who treat others kindly.  

And that one day, in their lifetime, they won't have to spend a weekend out of the year trying so hard to get the world to understand what our life was once like with a sister who was so very sick because this disease and every one just like it will no longer exist.  
That is my hope for them.
---
But for now, batten disease does exist.  
It makes children very sick and then it steals their life completely.  
And in it's wake, it leaves siblings behind who spend the rest of their life in agony of a different kind because a part of them is forever missing.  

This weekend, please help us share Mabel with the world.  Help us share statistics about batten disease so that we can educate people around us, in hopes that they'll donate.
Lastly, if you feel moved to do so, please help us fund research by donating in honor of our girl at 
www.bdsra.org.
----
More posts to come....









Monday, May 30, 2016

to the lights of my life, love mama.

Dear Nora and Braden,
There once was a tiny girl who lived here with us.  She was yours and you, hers.  Yesterday we celebrated her life because it is so worth celebrating!  
We wore yellow and talked of her, much like we do every day.  Still, even these gestures feel small compared to the amount of love we all feel for her.  What could we ever do to match that kind of love?

Death doesn't take away that love, guys.  Just maybe, it even enhances it. 
Grief is such a trickery.  
It's wild and changing and cyclical and strange.
The two of you are really brave and very strong but your grief comes at different times in different ways.  It is always, always going to.  And that's ok.  

I want you to hear me today about a few things.
One year has passed since your sister left our arms.  In a way, a celebration of her life and a big event makes it feel like now that we have done all the hard 'firsts' without her, we should be 'past it.'  
You may feel like the world thinks we should just move on.  

The world is wrong. 
Yesterday changed nothing.  
It marked a moment in time that changed everything.  And we will both celebrate that and mourn her forever.  It is not a yielding of our grief nor does it have to be a distinction in the way that you feel.  You will still feel all the things you have been feeling, and honestly-maybe more.  

One year is no time at all to process the fact that the littlest girl, the light of our lives has not been in our arms.  
I am just now retrieving alot of the memories that shock and survival stole from me this year.  As they come up, it may all feel fresh and new once again.  We may cry more now than we've ever cried before.  Do not put pressure on your hearts to heal.  

There is no healing from this loss.  There is simply learning to live with the pain of it and honor her while doing so. 
We honored her last night by lighting up the sky in her memory.  
Aunt Rachel says that the song "Sky full of stars" reminds her of Mabel.  Me too.  
The sky full of radiant color, the sky full of fireflies, the sky full of a beautiful sunrise, or an unmatched sunset.  The sky full of life reminds me of your sister because she once was alive.  
And she lit up our lives in a way that we can't probably ever explain to anyone else.  
Thankfully, we are a family and we just know. 
We also honored your sister this week by asking people in our town and around the world to do one random act of kindness in her name.  I had a few people send me messages telling me of the very unique and special things they were going to do for others yesterday.  And then they were going to share with them the story of your sister's life.  A little girl who now lives in Heaven with our Maker!  
How special!
By living really big and very full, we can honor your sister every single day.  There were so many things she was unable to do with her earthly body.  I watch you both and I think of how incredibly lucky you are to do the things that you do.  As long as you never take those things for granted, you will be honoring her.  

The one thing that your sister could do effortlessly in this life was love purely.  She was unable to judge others or treat them unkindly.  She was unable to lie or cheat or steal.  She was unable to say or do hurtful things.  She knew nothing but the kind of love that the rest of us will spend our entire lives longing to feel, give and receive.  
And God gave her to us!  We are so so lucky!
As our friends and family gathered to eat, laugh, and surround one another, I hope you know that it is always for you.  We want you to never feel alone.  I want you to look around at the faces of people who love you and can help carry you through anything at any given time.  In this life, God has equipped us with so many people who will never leave our side.

We have a village, kids.  No matter what you face, you won't ever be alone.  Just look around and know-you are safe and taken care of in every single way. 
  Sometimes this may all feel very surreal.  
It may feel as if we are living two lives: the one where Mabel was with us, and the one we are living now.  Please know that I understand.  I feel that way too.  
Sometimes it may feel as if the life with her wasn't even real.  
Oh, but it was!  It was so real.  

It was real, and hard, and beautiful, and special, and sad, and lovely.
It was so many, many things that so many, many people will never experience.  
And you have already lived so much life!
It makes me sad that you have had to, but I am also so grateful.  I think that as you grow, you will become two indiviuals who will live life fully; recklessly even.  
Because it's our only one and you know it!  
And if you haven't already figured out that very simply concept that most people never do...you will soon, and my hope is that you'll chase after this life with all you have.  

I hope you'll open your hearts, run hard after love, travel far, take chances, eat really good food, laugh hard every day, dig deep into the ground to plant something that will grow, grow, grow!  
I hope that you will really engage yourself with others, fall hard into whatever you're passionate about, and stand up for something that you believe in.  

I hope her life will light yours up and you will never, ever look back. 

 My hope is that through Mabel's life, on her good days and on her very worst- 
you saw me live.

And that after her death, on my good days and on my very worst-
you still see me living.

I hope that you're watching and that you understand that though it's cliche' and often annoying to hear, we really do only have one wild and precious life.  
Love, and heartache, and tragedy, and death, and joy, and sadness, and change...
it's all wrapped up inside of it to make something really extraordinary if we simply let it.  If we choose to live it.  
 

I miss her.  
And I want to miss her as deeply and fiercely, and gritty as I possibly can.  I want to feel the tears pour right from my spirit out into this world just to know that I have hollowed myself out in the aching.  

Please know, that it is ok to do that while you continue living.
And loving.  And growing.  And changing.  
In fact, you should do it all and altogether.  It makes life rich. 
 It saturates you with the very meaning and essence of  why we were created in the first place. 

Last night we lit up the sky for your baby sister.
Every single day I hope that I can light up your world with all the things that help you understand that this life is ours for the taking.  We should go after it, dig deep in it.  
I hope you look around and see what I see: 
a chance to make a difference, to feel all things deeply, and to live fully.  
To really, really live. 
I love you both more than I can ever say.  
I am proud of you just the same.  
You are two of my greatest gifts and you will always light up my life.   

Love, mama. 

Friday, May 27, 2016

This is motherhood, too.


This is a post that I wrote 7 months ago and never shared.  Today, just 2 days before the first anniversary of her death, I decided to finally publish.  This is a painful read.  Please do not feel obligated to do so.  But my prayer is that if you do, you feel the true hope of our Savior in our experience and through my words.
----

My youngest daughter Mabel had Batten Disease.
 For the first half of her life I searched desperately for that diagnosis.  For the second half of her life, I lived every day knowing she was going to die.  


My motherhood experience shifted when Mabel was born just a few short years after her healthy siblings.  Suddenly everything in me was consumed with the need to know what was causing my precious baby to be so sick. She never met a milestone, she couldn't see, she could never gain weight; could barely suck on a bottle to try. She worked incredibly hard in therapy to sit on her own but lost the ability to do so just months after accomplishing the task. She had constant seizures. She didn't talk, crawl, or walk. Batten Disease caused her body to jerk at all times (picture Parkinson's but in a small child; all limbs jerking, all the time). Mabel cried a horrific, inconsolable cry for most days of her life. But she also smiled, laughed, and responded to us in the most pure, and perfect ways. 
Essentially Mabel was an almost-5-year-old infant.


Before Mabel's diagnosis, the doctors viewed her simply as 'failure to thrive.'  During this time, I made the decision to have a g-tube placed to help provide nourishment to her body. At the time Mabel was on several seizure medications, all at a very high dose. Night after night I would administer her medications only for her to vomit them back up immediately. The puking never stopped, thus the seizing never stopped. We had no idea at the time that ultimately, because of her disease, none of this would matter anyway.



Twelve weeks prior to my daughter's death, her body began to reject nourishment.
  At this point, strangely enough, I wasn't surprised. Mabel's body rejected itself in one way or another many times a day. In fact, her own body was a harm to her. It just so happened that after her diagnosis and after finding out the excruciatingly awful ways in which these children die, I prayed one last bargaining prayer to the Lord,
"I can accept this.  In fact, I do. Thank you for giving me the answers.   My daughter has a disease that is terminal.  There are no treatments, there is no cure and there is absolutely no earthly hope. You have entrusted me with her life and I choose to put my hope in YOU...
I trust you with all of me, Lord...
 ...Just please don't let her stomach stop working."



I don't know why, but immediately and ultimately I knew that I did not want to have to watch my daughter's body shut down in that way.  At her heaviest she only weighed 19 pounds and I couldn't fathom the thought of her body deteriorating before my very eyes.  I literally said out loud and many times in the quiet alone, "...anything but that, God."

You see, this is motherhood too. 
My daughter was on hospice for 2 1/2 years.  We were fully prepared for what was to come. 
Yet in the moments leading up to her death, immediately following her death, and every moment since she died, I realized that was never true. 
How could that ever be fully true?

Mabel died on May 29th in my arms, in our home, just as we had prepared. 
As Mabel's stomach began shutting down in the weeks leading up to her death, exactly in the way I prayed that it wouldn't, I started to search deeper within myself and really began asking God what it was that would be most healing, most private, and most sacred for Mabel's siblings as far as her death was concerned.  It didn't take long before the panic and reality of what was to come consumed me. But in the moments when my thoughts were the most clear, I knew what needed to be done.


At this point in her life, I very much felt like her death was going to be a more intimate experience than even her birth.  As mothers, we go to such extreme measures to make sure we cover all of the preparation bases when it comes to bringing our children into this world.  We visit the hospital, or prepare the birthing room if we are planning to do so at home.  We contemplate on and pray about who we will want present with us when our child is born.  We intentionally pick out our child's first outfit and plan, plan, plan down to the very last detail so that our expectations of that experience can be met, at least to some degree, as we had hoped. 

In this case, I had several years of living [very fully] with my daughter, all while knowing she was going to die.  Indeed, I had time to think on the details of her death and plan for it in the ways that I hoped would make the transition of life without her easiest on all of us, focusing mostly on her sister and brother. 

So, before Mabel died, I made the necessary calls to ensure that we would be taking all of the right ethical and legal steps to keep her body at home with us after her death. 
If that was the choice I was going to make, after our hospice nurse pronounced her dead, I would be fully responsible for taking care of her body until the time of her burial.  This meant that not only would I have the intimate task of caring for her physical body as I had done every day of her entire life, but that her siblings would be in the comfort and privacy of their own home without the unnecessary voices and noise of onlookers.  They would be able to grieve without the restraint of time and in whatever unique ways were necessary for each of them.

Thinking about those initial hours that were sure to be exhausting, confusing, and devastating for all of us- I knew there was no other way.  And I knew I was more than capable of the task.  Keeping Mabel at home after her death would allow Nora and Braden to have the option of helping in whatever ways that they felt like they could or wanted to when it came to the final care of their sister. 

About an hour after my daughter died, and after we had drained her body of all fluids; with shaking hands and a shattered heart, I dressed her one final time.  She wore the sweetest white shirt that she had worn on her 4th birthday.  My sister, Aunt Jeni, bought it for her.  She wore pink leggings, and sunflower socks covered her pink-painted toes.

 Midday, the funeral home arrived with the beautiful casket that they had ordered for my very rare, tiny, and very sick daughter.  It was perfect but I remember thinking that I was thankful that they didn't have any others to choose from.  I watched Nora and Braden's faces as they brought it into our home and placed it in her large bedroom; a room that I now know had to be prepared perfectly by the Lord, seeing as we had only moved into this new house just months before Mabel's death. 
They understood, we were together, and there was overwhelming, undeniable peace.

When the time came, Chris carried her body from the bed where we watched her writhe, jerk and sleep, to the bed where her body would finally rest forever. 

Once there, her older sister combed her hair and placed in it a perfect and delicate yellow bow, made by her Aunt Rachel. Meanwhile, her brother played Legos on the floor beneath her.  He stayed in his pajamas all day and would roam in and out, standing quietly, just looking at his sister.  Nora wandered back several times throughout the day to re-comb and re-adjust Mabel's hair. Later in the afternoon, she also placed a necklace around Mabel's neck, and she continues to wear the matching piece close to her heart.
A few hours later, right before dusk, the funeral home came to take our girl to her final resting place.  This was when the decision to keep Mabel at home after her death was solidified in my heart because even in these moments, I hated separating myself from her.  The beauty of it all is that within twelve hours of her dying, we were able to swiftly and privately lay her to rest. 
She was never out of my arms and in the care of another.

I know that this isn't the right decision for every family.  It may sound absurd to some or too painful for others.  But for us, it was more than beautiful, more than necessary, more than perfect.  Because I was prepared, took the time to do the research, and asked the right questions, I was able to think about my older (but very young) children and still, in the midst of my grief and pain, nurture and protect them in the ways that they needed during those very critical moments.

 It has been five months and I am still incredibly proud of the strength God gave me to carry through with the plan He placed in my heart.  It was excruciating but necessary, and without Him guiding me and enabling me, I would have been helpless.

The time that Nora and Braden got to spend alone, in their home, with their sister after her death is a gift that I know they'll look back and be thankful for.  I'm also thankful that we chose such a non-cultural way to reckon with death because my children and Mabel's tiny loved ones will have a perspective of 'normal' that is different than most but that left them with peace.

Motherhood has always changed me. 
But this, this is something that most mother's will never have to do; live out the circle of life with their precious child: birth, life, death.
Motherhood forms me, and floors me all at once. 
That is the only thing that has remained the same. 
------
For more information on batten disease or to donate in Mabel's honor please visit: www.bdsra.org

Tuesday, May 24, 2016

the plane.

She's boarding a plane tomorrow; a flight that brings her home to us.
Thoughtful cards have started coming in the mail, and the most kind and beautiful gifts.
Sweet messages have been sent and, in turn, read.  Appreciated. 
The world around me is hushing, honing in, quieting in preparation; remembrance.

Our tiny girl met Jesus almost one year ago.  
This is the week.  
The week when all the things flood my memory but nothing really feels any different.  I'm not sure how I expected this to feel.  It's slightly more intense, my memories.  But otherwise the ache is just as strong, dull, present, thick, deep as always.  

I now have many friends who are bereaved mothers and many who are also exceptional writers.  They tell so eloquently about their love, their loss, this life.  
It's been quite opposite for me.  In fact, such numbing.  
Of my brain, my hands, my heart.  
I read recently of my friend Michaela's 'intentional grieving' on the first anniversary of her sweet Florence's death.  I thought about it long and hard and came to the conclusion that there's somehow a disconnect for me in the description of doing such.  
We will, of course, do that--intentionally grieve her in our own ways.  
Some together and some very much alone....  

We do that all the time.  Every day.  
And so does Michaela and all of the other mamas out there who's hearts are split far and wide between earth and Heaven.  I am no different.  And that is what I think I have felt the most over the course of this last year.  Unity in love and death.
We loved Mabel so very much, so very richly, so incredibly purely that it almost doesn't feel possible that any other beings could ever love another human the way we loved her.  And that just isn't so.
So many of you have.  And do.  And will forever love yours the same.  
Death doesn't stop love.  God is love, after all.  There is no stopping that which is eternal.  He who is forever.  In the Bible death is even referred to as precious. [psalm 116:15]
And oh my Lord was it ever!
The days leading up to it?  No, no.  
Gruesome and lonely and exhausting and sad and terrifying are only a handful of adjectives that  barely begin to describe the days leading up to her death a year ago.    
Those are the words of this earth and it's experience.  This empty place can only ever produce empty words for our hearts.  Nothing of real substance.  Nothing of true matter 

The words to describe her death?  Oh to describe her death...
Orchestrated, moving, powerful, beautiful, light, serene, amazing, surrounded, perfect, powerful...
Absolutely, totally, completely precious.  
Most probably cannot comprehend how a mother can write about her child's death in such a way.  I'm not even sure that I can understand how it's possible for me to still be standing here today without her in my arms.  What I do know is that I placed her into the Father's arms long before she was even born.  I entrusted her life to Him and I promised that I would love, follow and obey Him forever, unconditionally. 


I prayed for healing over Mabel's body many times when she was alive.
But then, somewhere in the middle of ordinary life, there was this one moment when I realized her healing wasn't going to be on this earth. Mabel's healing would come only through her death. It was then that true peace fell and I knew with clarity what it meant to surrender all. 
Without condition.
That kind of love is limitless. That is the God I know.
 
The details of Mabel's death are so sacred.  
I have been writing them periodically throughout the year...as I can.
I don't ever want to forget just how meticulous and good our God was in those moments when I felt like the entire world would shatter beneath me. 

Tonight I wait patiently on the plane that is bringing her from Washington to Illinois in the middle of summer heat and sadness to be with us.  
This year, the air isn't as heavy with burden or worry.  My eyes are rested and my body is healing. She has always made it just in time.  In fact, they all have.  I have never ever had to be alone, not even on my hardest days.  I have flesh-God surrounding me always.  
He promised never to leave me.  Not ever to forsake me.  
And when I look around at their faces, each with memories and perspectives of their own, I am reminded of just how intimately true He is.  
I hope tonight, in the midst of whatever it is that life has given you, you can see the true Maker.  
He is faithful in times of good and in sorrow.  He is faithful always, always.    
 ---
As we prepare to intentionally grieve Mabel by gathering together this weekend, we ask that you would wear yellow and do one random act of kindness to honor her life, and in her memory.  
Please use #mabelsable so that Nora and Braden can see how greatly their sister impacted our world!
 

Wednesday, May 4, 2016

rejecting food, feeding my soul.


Last year on this day I posted the above photo on instagram and typed it for the first time:
her belly was no longer working correctly. 
 
Putting it out there for the world to see and understand made the fear and horror that we had been facing inside of our home for weeks more real.  It made it true.  All of the details in her body were relentless in making it known to us. 
Our girl was going to die and it was just a matter of time. 
 
It was so hard because there was no way to know for sure.  You think there would be but there was no particular defining moment that made me see it more clearly or understand better what would take place or when.  I was in a bad way; a worried and fearful mama, mostly scared of what dying looked like for this tiny child in all her frailty.  I just couldn't watch her wither.  I just couldn't watch the end steal from her, her smile.  I was terrified.  I spent the days crying as I walked her and screamed loud for mercy on country roads.  I cussed God and He comforted my soul.  I cursed the world and all of it's heartbreaking beauty, knowing that I would never, ever see it the same, not ever again.  I didn't know then what I know now-which is that I could.  And even, that I would.
 
I wasn't sleeping and eating wasn't a necessity anymore either.  I cried for hours every day for weeks.  I only remember moments, bits and pieces in time and conversations.  I remember knowing how close she was to dying and feeling like no one else around me knew for certain.  Until they did.  And then the hard things followed.  The phone call to the funeral director while I sat in the morning sun on my front porch alone.  It just happened in a moment of total bravery and even caught me by surprise.  The call that I had dreaded for so long had been made and suddenly it was all so surreal.  Hard but really easy decisions followed.  They were the kind of choices that revolved around tiny children's hearts and what was best for only them.  They were all that mattered in those moments when nothing else made sense.  What would ease the hearts of a broken-hearted sister and brother?
 
None of those things happened before today, last year.  They were all to follow this day.  I first had to endure Mother's Day, knowing in my spirit that it was the last Mother's Day that I would hold all three of my children on earth.  And then a couple of weeks followed before the tough stuff really took over our daily life.  At this point, one year ago, I was still feeding my baby with batten disease and then draining her belly 4 hours later of the food that she never absorbed... in order to feed her again.  I sought advice from all the amazing medical professionals that I had surrounded myself with and only got fairly clear answers from one, a dear friend who loved Mabel like her own and had helped me with the nurturing of my babe since she was just 6 months old. 
 
She reassured me that what I was feeling was true and right. 
That the intake of food was making her miserable, that her body couldn't absorb the food, that feeding her and then draining her belly hours later-all day, ever single day-was keeping her alive but at what cost?  She would scream so harshly when formula hit her belly.  She had stopped sucking and drinking by mouth weeks ago.  This was the time when God would have to show me, and I as Mabel's mom would have to really listen to Him in order to know what was right. 
 
So for the next couple of weeks, before the vomiting began and while she was still smiling a little through our days; before the screaming became indescribable and the very life being poured into her made her body reject itself-I continued to feed her.  And then, hours later, drain her belly.
I remember like it was yesterday, watching in total horror as every single ounce of undigested food would come up through the syringe the second I hooked it into her g-tube button.  I didn't have to "vent" it.  I didn't have to "plunge" it.  I simply hooked it up and I watched. 
Four, five, sometimes six hours had passed and yet food came up from her belly and back into the place where I poured it to begin with.  I sat beside her and sobbed, knowing. 
Oh the knowing.
 
I documented all of it.  I frantically sent photos and got no good responses.  No one knew the answers and that was no one's fault. 
It was just me, the Lord, and my girl.  The way He had intended all along, I'm sure.
 
On this day last year, I got a few minutes of really good smiles.  I pulled out a dress that I loved and I put her in it.  I took her outside on my favorite quilt to take photos with my camera that I really felt would be the last.  I'm glad I took them. 
...But I hate them now. 

Don't get me wrong, she's beautiful and perfect, of course.  And we had a really funny time for five minutes trying to capture these little grins.  But her body was really little and even if no one else could tell the difference, I had already felt the changes beneath the clothes and I was sick about it.  It was hot on this day last year and the tiny bugs had already started flying around us.  They were landing on her face, next to her slobber.  I had to pull her hands away from her mouth in between pictures because she was biting and chewing them so bad.  She grunted and I talked, like always.  Just Mabel and I. 
 
Chris was inside and my mom pulled up for just a few minutes.  I don't remember what happened next.  I took her inside, put her back into her jammies and the rest is completely gone from my memory.  Like most things from this time, one year ago. 
 
I printed one of these photos for my mom for Mother's Day last year.  She has it framed in her kitchen.  Mabel's eyes tell a story of Heaven and I think I'm heartbroken knowing it, looking back. 
 
 
I miss her so much.  I miss her body and her smell and holding her close.  I miss caring for her in the ways that only I could.  I miss her matted hair and her sweet fingers. 
 I've gone through the motions so well.  Some days are awful and some days are full of total peace and joy.  In fact, a lot of them are. 
 
Reliving the days from last year are agonizing.  In fact, the memories of the days leading to Mabel's death are harder to think about and tap into than the actual day itself.  That day was remarkable and beautiful.  These days were excruciating, indescribable, lonely and terrifying. 
 
During this Mother's Day week, so far, I feel so lucky to be her mom; their mom.
To be a mom. 
It is the greatest gift I have ever been given and I am so grateful.  I am thinking about all of the other mother's who are hurting this year in a whole new way.  This will be my last big 'first' without my girl and that is just so hard to believe. 
 
I have spent one whole year honoring and worshipping God for the gift of Mable's life; all of it.  I am still humbled that I was part of her remarkable story.  Almost an entire year has gone by since all of my children were in my arms, in my care, in my home.  It seems unimaginable, yet it's true. 
 
I haven't cussed the Lord for almost an entire year.  Instead I have drawn near to Him and rested in His care.  He knew all along how the days of last year would look and I am thankful.
He always knows, and truly He is good. 

She was no longer hungry and I was starving for more of Him. He began to nourish us both in the way that only He can, and continues to, even now. Her, eternally and me- until we meet again. 
Oh what a God. 
 

Wednesday, April 6, 2016

Grief Support Group.


Tomorrow night, Thursday, April 7th at 6 pm in the community room of the Clinton YMCA, "Mabel's Able" will be holding our first ever grief support group. 
 

The goal of gathering together is to facilitate a safe, private environment... where we can offer emotional support to one another through our loss, grief, & experiences with the hope of bringing about healing through community & friendship.
 
If you or someone you know has lost someone they love and this feels like something you {they} may want to try, please join us 
 
[[This group is open to anyone. We will have an open forum for discussion with a weekly facilitator but we want to emphasize that this is not and should not take the place of a professional counseling service.]]
 
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Somehow, over the course of my young life, grief has not only become my closest companion but also my true passion.  As a culture that is so dedicated to education and pursuing all avenues of such, we are highly uneducated in the area of grief.  Mostly, I believe, because as a general population we just cannot emotionally handle it. But there are many reasons that have led us here, to a fast-paced era of getting over this and fixing that.  We are lost in a realm of focusing our attention anywhere except inwardly or on anyone around us who is hurting.  This is so damaging to not only our own psyche but the mental state of our generation as a whole.  I fully stand by the mission in my heart that screams loudly that we must
 
"We must reach others around us who are hurting!  We must tell them they are not alone!  We must not turn our back on the pain.  We must not allow them to feel shame about how their heart may feel.  We must enter into a place of comfortable grieving with those around us- empathizing with their hurting, messy, broken, beat up and busted souls.  We must, oh how we must!"
 
This week has been awful for me.  I am 3 weeks post a foot surgery that has caused me an immense amount of pain.  Last week I found out that the incision wasn't healing properly and felt discouraged and today I got more bad news that I could possibly develop an infection.  I'm still in a lot of pain in my foot which has also caused a lot of pain in my back. 
I'm completely overwhelmed by the physical pain. 
 
At first it seemed almost like a respite from the emotional pain but now the two have joined forces and made a bed in my heart; one that I feel trapped in, utterly and totally helpless.  I know the physical pain won't last.  There will be an end.  But telling myself that only makes the emotional pain worse, as I know the longing for my baby will haunt my heart for as long as I live.  And that could be a very long time. 
 
The thoughts swirl and where I once had an outlet in exercise I now find myself in bed with a heating pad and pain meds, weeping for all that I do not have and cannot do.  And yes, it's a ridiculous pity-party for one.  Just me. 
 
But truly, all of the pain and agony has me in a bad way and I just can't shake it.  I'm remembering details that I cannot and do not want to recall just yet.  I've done my best to run from them (in every way) for just over 10 months and I'm not ready to lay here and listen to my mind or tap into my memory.  I just can't and yet I find that I don't quite have a choice.  I have nowhere to go and nothing to do and that makes me angry, sad, frustrated and oh so vulnerable. 
It's unbearable actually.
 
Three nights ago the kids heard me wailing from their rooms and came to meet me on the couch, one in front and one behind me as I cried.  They planted their faces next to mine and as my body shook they held fast to their mama in a way they haven't before.  I opened my eyes, mucky with mascara and looked at their faces and noted how unfair this must feel; their own hurt being pushed aside to comfort me in mine.  No child should have to.  No mother should have to.  All that we've endured and have to continue to walk with; it's just so hard and seems so cruelly unfair. 
Of course we remember her pain and are grateful that the horror she endured is over, but that doesn't ease the pain in our own hearts or home.  In fact, at times it just enhances it.  It's just so sad to think of our girl suffering, but also not being here with us.
---
Yesterday I got text messages from two of my sweet grieving mama-friends. 
One basically said, "I don't want to interact with anyone who will not openly accept my use of the F word."  I agreed the same and felt free in it.
 
The second said,
"I wrote her anniversary story and I am literally destroyed.  I think I need wine but it's the middle of the day..."
To which I also agreed and later replied, "I took a Xanax.  I hope you drank that glass of wine." 
---
So I'm laying here and I feel completely helpless and then I get these gentle little word reminders that even fully-abled grieving mama's feel the same.  They are wrecked and ravaged and exhausted and shattered.  They need non-judgment and wine and medicine and sleep and silence and busy-ness, and friends and noise, and nothing.  And everything. 
Like me, they don't even know from minute to minute what they need but they sure aren't trying to figure it out either. 
 
We are all just doing the very best we can. 
And we're talking about it.  And we aren't ashamed of it.  And we keep giving a voice to it.  And we are trying desperately to recognize it and normalize it and not over-rationalize it.  We are just living it and are horrified by it.
But what makes us different than generations before us is this:  we are communicating about it. 
 
And that's why this idea of community grieving is important. 
It means that we come out of confinement, into a place of solidarity to join our voices with others who are hurting.  It means that we open our hearts to hopefully bring about peace for ourselves and those around us. 
 
God speaks about it constantly in the Word, about gathering together.  And I don't think that it necessarily always means for the mission of spirituality, though I do believe something insanely spiritual  happens when people gather together with other people who are longing for the same thing. 
 
Especially in the presence of grieving hearts...
  There is so much tenderness, strength, understanding and knowledge in the presence of those grieving, and just enough brokenness to let the beautiful pour in. 
 
This art of mourning is a sacred and powerful dance.  It is exhausting in ways that are unexplainable unless otherwise fully experienced.  It is overwhelming and frightening and lonely and so very painful. 
 But it is an art. 
And a very forgiving and stretching process. 
 I just no longer want it to feel like one that we have to endure alone. 
 
So...if you're reading this and your heart has been shattered, or you are grieving for that child that was never born, or one who took their own life, or your mother who never got to see your kids go to school, or your daddy who can't walk you down the aisle, or your grandma who raised you like her own, or your partner that slept at your side for 43 years....
If you are reading this and have never shared your story of hurt or maybe you've shared it a trillion times over...
If you are reading this and you feel like you maybe just need a friend; someone who may understand...
Please, please, please step out and join us. 
 
We will not have all the answers.  We will not bring a 'fix' to the hurting.  But we can assure you that you will not walk away empty. 
Sometimes it takes a congregation of the brokenhearted to see the strength that lies inside of yourself.  That is our hope.  That we can all walk away with a little bit of extra strength for the days ahead.
 
For questions please feel free to email me: rameelin@hotmail.com