Friday, February 24, 2017

Rare Disease Week: //my own health journey

I'm beginning this post on Feb 23, a few days before we recognize Rare Disease Day.
I decided to finally write about my own health because, well, it is currently relevant in my every day.  My own health has officially consumed me. 

And though I am unsure that what I am struggling with is a rare disease, I do know that it is a burden I have learned greatly from and want to begin to share my journey, if even just in part.  If for nothing else, maybe one day Nora and Braden can read my words here and understand what I, as their young mom, experienced. 
I suppose in order to paint the entire picture of what I have walked through in the last year (and more importantly the last several months) I have to begin with the foot surgery from hell. 

For several years, off and on, I had dealt with pain from what I assumed was a 'tailors bunion.'  After Mabel died, the pain got to the point that I could hardly wear shoes or exercise, which was (I was certain) the only way I would survive coping with her death.  I saw a podiatrist.  He confirmed that it was a bunion, that I could have surgery if I had tried everything else, that the surgery was quick and easy and the recovery for someone 'young and healthy' like I was would be a couple weeks. 
He reassured me that I would have minimal pain and would be back to myself in no time. 

Just like with any surgery, there are risks and it was my foot so I was extremely nervous.  But I felt like I didn't have a choice; I needed to be able to work out and I wanted to enjoy walking, being outside and playing with my kids.  I had also heard from several people who had bunion removal surgery and had great success, so I scheduled the procedure.  That was last March.

Several things went wrong from the very beginning when it came to the healing of my foot but the story itself is long & detailed.  The short of it is--I knew immediately that the pain I was having after surgery couldn't be normal.  It turned out that I was right.  But before getting to the bottom of it; to the root of my pain,  I was treated, for several weeks by my physician like I was being dramatic. Until it was made clear to him that my body was having an actual physical reaction to the vycral (deep) sutures that he had placed in the wound during surgery, he took terrible care of my foot and of me as his patient.  This resulted in a lot of really great home care (by Ashley), over-the-phone advice (from my friend Nick), and eventually many trips to the wound clinic where they helped heal my foot.  It was actually the physician at the wound clinic who's final advice to me was that maybe I should follow-up with a rheumatologist with the concern of a connective tissue disorder. Ironically, a rheumatologist is just about the only specialist I haven't seen in the last few months regarding my health.
 Essentially it took 16 weeks for the surgical wound to fully close and even now, I have a lot of pain, tenderness, and sometimes discoloration in the area.
This non-healing was so discouraging and so painful.  Of course it taught me many lessons; none of which I really had the patience to want to learn.  But I was left with no choice for many weeks while the pain radiated through my foot in a way I had never experienced before.  I tried to push through but eventually I gave in and tried to listen hard to what the Lord may show me through it. 
Fast forwarding about July of last year, (really just a couple of weeks after my foot wound finally closed).

Almost overnight I suddenly began urinating really frequently.  And not just in an annoying kind of way.  In a control-your-life kind of way.  I was getting up several times through the night almost immediately and before I knew it, I was literally going to the bathroom every 20 minutes (and I wish I were exaggerating).  I have a history of recurring UTI's but this was something new.  I remember the exact day it started because we were vacationing in Michigan at the time.  During this same week, I had the worst migraine that I have had in years.  It lasted for almost the entirety of our trip. 

Months passed but by winter I had started working and noticed just how disruptive the whole issue had become.  I saw my primary care doctor, & asked him to refer me to a rheumatologist.  Instead he ordered a rheumatology blood panel.  All of that came back normal, but I continued to pursue other specialists outside of his care as well. 

Sometime around Christmas (I remember specifically because the house seemed darker and we had twinkle lights on the tree and in other areas of the house) I started to notice that my vision was different.  Especially in the evening hours I was having a hard time seeing across a room.  I almost felt dizzy and realized that I could tell when objects were moving with my eyes (I have congenital nystagmus which causes my eyes to shake naturally.)  This has always been a known part of who I am.  I immediately have to tell new doctors and nurses that I was, in fact, born this way so that they don't immediately worry that I have a brain tumor or another neurological issue causing the involuntary movements in my eyes.  My nystagmus, in general, has never caused disruption to my life.  It has never been a real issue for me.  It tends to get worse if I am tired, anxious, in pain, or lying (so my mom says,) but otherwise I was always under the impression that I had adjusted to the shaking movements at a young age and it wouldn't be an issue later in life.  I have had several brain MRI's through the years and saw many specialists when I was very young concerning my eyes and vision.  When I was a baby my parents took me to see a specialist in St. Louis who informed them that the nystagmus was likely genetic (he assumed my siblings would be born with the same issue) and that I would potentially be blind as an adult.  The truth, so it seems, is that there just wasn't as much research on the entire disorder as there is now.

Right around this exact same time, I began to notice a drastic change and a huge increase in my already chronic, low back pain.  The pain was a little higher than usual (I have had and been treated for pain in my coccyx area since having Nora.)  But this felt deeper, different, more full, hard to explain.  At the beginning of January, after working through the pain during the holidays, I quit my job, explaining that I just had to find answers for why I am not feeling good.  My boss was amazing and supportive and I'm so thankful.
As time has gone, and a few months have passed, the back pain is now my most intense complaint.  The pain is constant.  I wake up with it, it gets worse as the day goes on and by night my entire low back is burning; literally a searing pain deep inside of me.  I have never experienced something so painful and consuming in my entire life.  There is no relief and I'm totally exhausted because of it. 

Speaking of exhausted, this was yet another new symptom that seems to have accompanied some of the others.  I have never in my life felt so painfully tired.  To say I have fatigue is such an injustice to the type of tired I am. 

But backing up a little, somewhere in the midst of all of this happening around Christmastime, I started measuring my urine output at home and keeping track of how often I was going.  And then one weekend at work I got so dizzy and had such a bad migraine that I had to leave and couldn't even drive home.  My brother came to get me and I ended up at the ER, twice in one weekend. 
A lot of my bloodwork was normal (but a lot of it on the very lowest end of normal). 

Coming out of the ER and going into the next week I was determined to get answers.  I made an appointment and got in to see my OB (also a good friend).  I asked her then if she would run a few tests on me regarding the urinating and other issues.  When these test came back, they revealed that my cortisol levels were extremely high.  This sent my on a journey that I knew could end up one of two ways...
-I would end up being told that long term stress had caused my adrenal glands to fatigue, resulting in my symptoms. (valid, indeed.)
-Or there was a bigger issue causing my cortisol to be high, such as a tiny benign tumor on my pituitary gland. 

I was referred to an endocrinologist who did several tests.  My cortisol is consistently high but can be suppressed with a low dose of steroid overnight, thus leading him to believe there was no reason for a brain MRI in search of a tumor. 

But at this point, just a couple of weeks ago actually, I had a couple other hormonal issues come up that led us back to fighting for an MRI on another front which ended up being really great timing because during this same week, I had an appointment with my ophthalmologist (for my eyes). 
This man is brilliant.  I have been his patient since I was just a little girl with shaky eyes.  But this appointment was different.  Immediately upon him doing my eye exam I could tell that he was concerned and thought something had changed regarding my eyes.  My vision was clearly worse but he said that my nystagmus had distinctly changed as well.  He left the room to call a neuro-ophthalmologist, the only one in our state, to try and get me in to be seen as soon as possible. 
He spoke directly to the neuro-optho before I left his office that day and had me set up to see him on Tuesday the following week.  In the meantime, I had a brain MRI. 
The brain MRI was read as unremarkable.  There is a notation of a slight Chiari Malformation but that has been read before.  I did, however, take the images to my appointment with the neurologist the following week so that he could not only read them but also keep them on file. 

That appointment went well overall. My vision is bad and has gotten worse.  He also seems concerned that I can now tell when my eyes are shaking, causing visible disruption to my sight.  This is likely leading to some of my migraines and is just a concern in general.  He made a couple of remarks about my MRI and did a full neurological examination and wants to see me back in 2 months.  I have had trouble 'finding words' but I have been associating that more with grief than anything else, at least up until this point.  In the last couple of months my mom has made the comment that she wonders what new medications I'm taking because I seem forgetful and also like generally slower in my thinking. 

The neuro-optho's main concern came down to Mabel's diagnosis of NCL and essentially saying that because we know so little about it, and genetics can be so unpredictable that he would like for me to be tested.  He wanted to do more 'investigating' and would see me soon, he said.  I left there that day feeling conflicted because what I know about Batten disease (from research and experience) and what I'm experiencing in symptoms do not necessarily line up.  
 But, I was encouraged by several very educated people in my life to pursue this route regardless of what I think is possible or impossible. 

So I sat with some of that information for a few days.  And then late one night I reached out to a beautiful woman who was diagnosed with adult batten disease several years ago.  She has an unknown variant of a dominant form of the disease (Mabel's was always assumed to be recessive but we don't know that for sure.)
After speaking with her, she too encouraged me to make the call and have the testing. 

Within a couple of days I decided to get in touch with Mabel's geneticist and pick his brain a little. He's a genius and obviously my favorite, having given us Mabel's diagnosis after so much searching, researching, and advocating for her on my own. 
   Immediately he suggested we do a whole genome sequence on me.  Insurance companies are approving these tests more easily now, unlike even a few years ago and there's no reason we shouldn't do it, he said.  If for nothing else, it may reveal something about Mabel's mystery gene that we were unable to find when she was alive.  The truth is, Dr. S would have began genetic testing on me the moment he saw me if I would have let him.  My eyes being what intrigued him most, I believe.  And ironically, here we are anyway.
Somewhere in the midst of all of that, I saw a urologist who diagnosed me with interstitial cystitis (painful bladder syndrome).  He started me on several medications, none of which have really helped the frequency or amount of urination.  He did a cystoscopy last week and my bladder looks healthy overall, which is good news. I have also seen a GI specialist for chronic constipation.  I follow up with that doctor next week.  The next step will be a colonoscopy sometime in the near future.   
I am wrapping up this post on Feb. 27th, the day before Rare Disease Day and the day where I am meeting with Mabel's genetic counselor and geneticist to learn more about the sequence that my daughter never had the opportunity to have but I now do. 

In just a few hours I will have my blood drawn and it will be sent away.  In a couple of months I will have more information about my genetic code than most humans ever even want to know. 
But I do.

A few years ago when I first laid eyes on Dr. S and he began to speak to me about my sick daughter, I knew that he understood what I had been feeling.  I knew that he and I were on the same page.  He said to me that when 2 or more systemic symptoms are causing chaos in the body, there is a chance that something rare or genetic could be the cause.  I never forgot him saying that to me and I remember leaving there finally feeling validated over my concerns for Mabel.

And when I called the office last week and he got on the phone with me, just like he used to, I heard in his voice the hope for an opportunity to try and figure this out for me. 
"Is it possible?" I asked. "is NCL possible?"
He replied confidently that although he doesn't think so, nothing is impossible in genetics.  Nothing is impossible in science.  He said that once before, too, when my baby had symptoms of NCL but on paper it was unlikely for a child at her age to present the way that she did; much differently than most children affected.  But he told me it was absolutely not impossible and tested her blood right away.  In a few short months, we had an answer to the question that had literally plagued me for two years-all because he knew nothing was impossible.  And he took a chance.
Before our wedding in October I was walking 4-5 miles a day, even with a painful (but closed) foot.  Now, I can hardly walk or workout at all because of the intense pain in my back and the weakness and overall fatigue in my body.  My vision is distracting and frustrating.  I'm sleeping endlessly and want to be because the pain is just so overwhelming. 

For those of you who know my family, you may know that my mom started to not feel well (very much like this) several years ago.  She still deals with pain and other symptoms that have an unknown origin, though she was diagnosed with Fibromyalgia at some point in her journey.  I suppose what worries me is that she was still many years older than I am when a lot of her symptoms presented themselves.  So for now, I am determined to see this through. 
We may find nothing or, we may.  But either way, I am in pain and I cannot stop until I find someone who will help me figure out why. 

I am alive and want to be!  It is an honor and a privilege that is not lost on me.  I have never taken my health or my life for granted and so now, I will fight hard to help myself through this.  Though, I am really tired already.  Having no answers is draining in every way.
But I cannot stop until I know what is causing the pain and how to make it stop, somehow. 

Wednesday, February 1, 2017

dark january.

The beginning of a new year has come and gone.
And I haven't written because I've barely been awake at all.  In fact, I brought my laptop to the local coffee shop this morning just to force my eyes open during the actual daytime. 

The month of January was, in a word, horrific.  Of 31 days in the month, the sun was only out 5 of them.  It was dark.
Literally dark and metaphorically, so very dark.
Finally I begged the Lord to show Himself because I just couldn't see through the pain and gloom. 
My heart is broken.  It's completely and totally broken.
Grief showed up this winter in a way that I didn't anticipate and could never have prepared for.  I learned that I don't know the taste of him like I once thought I did.  The familiar friend who had walked with me for so long suddenly took on a whole new form and felt completely unfamiliar to my spirit. In that same way, not only did I feel abandoned by my only true companion but also conflicted by my own feelings; the very things that I thought I had some control over. 
It turns out, as usual, I do not have any control at all. 
In December I started to have dreams again.  Actual, vivid, middle-of-the-night dreams.  Since Mabel died, 20 months ago exactly, I haven't had any.  Others have dreamt of her but I haven't dreamt at all.  Not of her, but not of anything.   I had never known anyone to not dream until I met Chris.  In our home growing up we talked of our sleep adventures often.  My mom and my sister are both distinct dreamers.  So when Mabel died and my dreams suddenly stopped, it was in a sense, another loss.  The places I would go subconsciously and the things I would experience in the night were just suddenly non-existent.  My days felt lonely and my nights felt empty.  I was resting, sure, but I have longed for that part of myself since the day she (and they) left me. 

Now they have returned and in a way that has been profound for me; the recollection of incredible things in my sleep.  Sometimes, though, I have found that dreaming is more exhausting than I once knew.  Almost as if I'm more exhausted following the nights that I dream than when I am solely in the dark with nothing. 

Along with my dreams returning, so have a lot of suppressed memories; things that I have apparently disassociated from in all capacities in order to survive the pain and loss of my baby.  But facing them now, almost 2 years later has put me on the very edge of the emotional cliff.  Of course, I want to want to walk through the memories because by doing so, I believe I would be allowing myself to grieve fully and to do so with intention and authenticity. 
I want to do that because it is necessary to be well but actually allowing myself to experience those memories takes a work of the heart that is excruciating in a way that words cannot effectively describe. 

My friend Michaela wrote it beautifully and perfectly this week on Instagram,
"Grief is the great disrupter.  It unearths the spirit.  Slaps it out of warm water into open air and watches as you writhe.  It is not just sadness.  Over time, I see that it is anger, difficulty coping with change, fatigue, anxiety, and panic.  It is depression, rolled over you like a blanket one day and then gone the next.  I can see it now, in my reactions to life.  It's not just the trauma of loss, it's my grief.  It builds.  I cuss out other drivers, I grip the steering wheel, I have trouble finding the sliver lining, I am restless and yet tired, I am unable to take care of myself, I lose patience too quickly....
...I am a dragon.  I slay demons in my sleep.  I get up every morning and even when I'm weak, the Spirit of God shines from my wounded soul.  I grind and claw and spit fire.  I see my weakness and say; you've got nothing on me.  I claim my place in society; I am a dragon mama.  I am a bereaved mama.  I am a broken mama.  I am a ferocious mama."
Grief is not just sadness. 
God, no.  Oh how I wish it were. 

This month I have felt all the anger that a person can feel.  It's undirected and even unintentional but it is very real.  This month is the first time that I haven't felt strong in my daily grieving.  It used to be an ebb and flow of missing Mabel but then feeling great victory for her eternal rest.  I could almost always reconcile it, and quickly.  Heaven was a balm for the ache. 

But this month, I haven't felt that at all.  I have thought more about the actual details of her death and wondered about each and every breath.  I have walked back through it in great detail.  Not just her death, but her life.  The moments when I would hold her and dance with her and walk with her.  The moments when I could hear her grunt from across the room and giggle at nothing.  The painful memories that I just haven't wanted to scratch through-at all.  And honestly, I still really don't want to.  It's so much easier not to.  It makes me feel so guilty to say it, think it, write it but my God, it's true. 

I see now, though,  that grief is also the great forcer.  He's going to make me even though I'm fighting hard not to. 
I wasn't going to surrender to him.  I didn't want to feel all the things just yet. 
But that was before I knew that I was going to be an Aunt.

Even writing it is incredible.
And painful.  And precious.  And terrifying.  And amazing.
And in the coffee shop, the tears flow down my cheeks hot and hard. 

My sister; the very first love of my life is growing new life inside of her as I type.  She heard a heartbeat that was strong and full of great hope.  Since finding out, I have experienced every emotion that I think a human being is capable of feeling.  Maybe even more than we're meant to feel in a lifetime. 

Our God, the rescuer and healer, and great planner of all things formed this little baby perfectly and placed it inside of my sister's womb to be born into this world at the most perfect time. 
And He did so with such intimate detail. 
A baby to be born in the middle of summer heat, sharing the exact same due date (to the very day) of it's sweet cousin in Heaven, our Mabel.

"Let go, my soul, and trust in Him...the waves and wind still know His name."

And then, I decided to surrender.  Not to grief alone but to the grief that God is providing my heart in order to heal.  Or to at least be well. 
For myself.  And for Nora and Braden.  And my husband.
But also, for this new baby that has probably already met my baby in spirit.  Who could very likely look just like her.  Or maybe sound just like her.  And possibly smell just like her. 

I want to give the best of myself to myself.  And to all of them... in every way that I can.
Right now the very best I have looks a little ugly. It's a lot of crying and a lot of sleeping and it looks very isolated and lonely.  That's because it is. 
But I know now that that's ok.  I believe that for this season, it's even meant to be.  And for as long as it looks this way, I'm going to let it be and walk through it the very best I can. 
However I can.

Some days I'm just proud of my heart, body, and mind's ability to have survived thus far.  I wake up and feel surprised sometimes that it hasn't all just shut down and given up.  But because it hasn't, I'm determined to help my spirit match the rest of me.  We are complex beings, after all, and every component doesn't have to match.  (I talked that through in therapy this week, which I recently started.) 

I'm working really hard to listen to myself and do the practical things I can to make it through this, my hardest season of grief, thus far.  I stopped working so that I could sleep more and let my mind and body rest.  I have seen every specialist I can to try and figure out some of the physical things that are happening in my body.  For so long I put off taking care of me in order to take care of everything else and now I'm paying a price for that.  I am reading when I can.  I am taking longer baths.  I'm laying with the kids a little longer each night.  I'm just trying to be very present with myself and whatever it is I'm feeling exactly when I feel it. 
This, I'm finding, is a much harder task then one would imagine. 
I'm hoping that February brings with it some answers about my health, some sunshine, maybe a little snow, and more of whatever it is that my heart needs. 

I pray that this month of love will be gentle with me.  But even if it is not, I know that God really will remain faithful.  Even if He feels distant, He is not.  Even if I push Him very far away, He watches closely from a distance, protecting my broken heart with an ease that only He can. 
I have found that unlike grief, God is not the great intruder. 
He is, though, the great pursuer.  Sometimes quietly churning my spirit toward Him.  Sometimes doing nothing and just letting me be.  Very much like I parent my own children, He loves me intimately and uniquely, knowing exactly what I need. 
"Everlasting, Your light will shine when all else fades.
Never-ending, Your glory goes beyond all fame.
And the cry of my heart is to bring You praise...from the inside out, Lord my soul cries out..."

Saturday, December 24, 2016

How to celebrate Christmas with a broken heart.

How does one celebrate Christmas with a broken heart?
The answer, I believe, is to let it just be broken.

Maybe, to simply stand in the middle of the kitchen floor and let the weight of grief seep from all the spaces of every. single.  crevice that feels the ache and longing all year long.  Maybe the key is to almost imagine it, visible beneath you.  Sticky, slimy, weighted.  Or maybe it's light like a puddle; one that you can splash in or wade through.  Maybe, as the grief drips from your bones, the broken spaces all throughout your body begin to feel nourished, like a fresh rain after a long drought. 

My bones remind me now of a dry canyon, one that is longing for it's water to fall, hard and fast in the vastness beneath it.  I think that it is important to let the dried up, untouched places within us be saturated by the healing that comes from the power of allowing ourselves to just be broken-hearted. 

So many times we want to heal our minds, our spirits, our bodies from this pain that is etched within us.  But there is no healing from great loss.  There is no fixing this.
The child we loved is gone.  The brother we lost is not coming home.  The mother we miss will always be missing from us. 

Those truths are within us and deserve to be recognized, reckoned with and accepted. 

Jesus said, "Blessed are those who mourn for they shall be comforted."
Their broken hearts will be touched by the hand of the Father Himself. 
But first we have to let ourselves be the mourners.  We have to accept that that is just who we are now and that does not mean we are not also whole, but it does mean that our hearts are also forever broken. 

At Christmas time, of all times, I believe we should unwrap our grief like the great gift that it is and snuggle it close.  It is the one sacred, and personal, and intimate gift that no one in the world can ever duplicate or recreate for us.  It belongs to you; the only one who can feel it, know it, and own it.
That is what makes grief beautiful and powerful. 
The semblance of it being yours and yours alone. 

I have unwrapped and continue to hold close my broken heart as I walk gently with myself through this second Christmas without Mabel. 
Her absence is felt in all that I do.  Her laugh and her cry resonate at the base of my entire body, reminding me that she was alive and that I still am. 
As I walked through our home yesterday, adding the finishing touches that make it feel like Christmas, I made Nora's bed as I do every day with the quilt that once covered her sister's. 
I breathed deep and felt the air rush from my mouth, down my throat, into my lungs and through my entire body.  I feel life in the depths of who I am. 
I feel her in everything I do. 

This Christmas, take your broken heart and make the beds. 
Dust your shelves.
Light a candle.
Open gifts, laugh with your family, eat good food.

Be alive.  Be broken.  Be both are. 
And you will always be. 

Saturday, December 3, 2016

my ash.

Our friendship was birthed from the belly of addiction.
Not our own addictions, of course.  We were only in 6th and 7th grades when we met, after all.
But a bond was formed immediately over the heartache we shared from the people we loved and the addictions that consumed them, and in turn, consumed us. 

I don't necessarily know how or why it happened.  One day, in Jr. High School, I just think I approached her or maybe the other way around.  And somehow I poured my heart out to her about my mom's brother who was an alcoholic; the one my mom took care of, worried about and checked on incessantly.  He couldn't drive anymore.  He had lost his license and at some point it had become the sole responsibility of my Nanny and my mom to get him to work.  I'm not sure if he was still working at the time I met Ash but I know that by this point, things with my Uncle Bo were severe.  My Nanny wore permanent worry on her face and I was with her every day. I loved her so much and I remember the burden I felt for the pain she must have carried. 
Her only son, dying of addiction right before her eyes. 

My mom worked the night shift at a hospital thirty minutes away.  She would get off of work at 11 pm and as she came through town she would stop to check on him every night.  She took him food and made sure he was home, always just hoping he hadn't walked to the gas station to buy more booze.  Many nights he had, and when she would find him, stumbling the streets, it was her responsibility to get him back home again, safely. 
She had two little girls to get home to, but he had become he baby, too.  Her much older brother; and oh, her broken heart.   

At 12 years old I most certainly already felt the weight and responsibility that his addiction had placed on our family.  It was inevitable.  He was loved and so it took everyone being aware of the problem to try and form a solution.  Time and time and time again.
There was rehab and there were nursing homes.  There was therapy after therapy and bouts of  long sobriety.  There was intervention and medication and so, so many doctors, and then-always, always....there was relapse. 
Devastation.  Disappointment.  Suffering. 

As I told her the story of my Uncle, my mom's only brother, Ashley began to tell me the story of her very own.  He was just a few years older than we were and already Ashley's brother was drowning in the disease that was addiction.  Her parents were fiercely trying to help him and I remember her sadness as he had recently been taken to a facility across the country in a serious effort to get their child, and her brother the best kind of help, always with the hope that he would return sober and that his life would be changed forever.  He was young and he was handsome.  He was also consumed by a force that was very much out of his control.

Her brother wasn't the only one who faced addiction in her family.  In fact she was just as much aware of the term and the actual ramifications that this disease placed on an entire family.  Because of this really deep issue that plagued our young lives, Ash and I immediately formed a bond that was deep and strong.  Our friendship was most definitely developed out of something altogether different than most.  Looking back, even now- I find it hard to understand how two young girls decided to open up to one another about life's deepest and darkest secrets.  But I know that out of that serious sadness, we found a friendship that went far beyond the average bond.  We formed a trust and a companionship that was sealed so tightly, even from the beginning. 
The story of our friendship isn't wrapped neatly with a bow of happiness.  In fact, it's more tattered and torn than I think I can find words to explain.  We spent many nights in our teenage years traveling to and from alateen meetings learning how to cope with the impact and the trauma that addiction was having and would continue to have on our lives.  We watched the people that we love suffer.  We also watched them hurt almost everyone else that we loved.  We learned to love those people FOR one another and invest our time and our hearts into them.  We learned to lean on one another, trust each other, and ultimately give in to the need that we had for this friendship above all else. 

High school ended up being a real challenge for me and so, during my freshman year I made the switch from public school to a newly-opened Christian school in our small town.  It was expensive and looking back, I realize that it was a real sacrifice for my parents.
 Ashley's parents enrolled her as well and our journey continued together as we made new memories (and a little mischief) along the way.  In this school we had a really great teacher who allowed us the emotional freedom we needed to cope with all the things life was throwing at us.  Looking back now, it feels small in comparison to all we have endured, but it was absolutely not small.  Every morning, before we began our school work for the day we were asked to go around the room with our prayer requests and we prayed together as a class.  This became imperative for the tragedies that were to come.  It was a foundation for our lives that I know was necessary and I'm grateful every day that our parents allowed us the opportunity to not only get an education there, but also to have the freedom of prayer and the sanctity of friendship.

We were in high school when I got the call that Ashley's brother had been in a tragic car accident.  I rushed to be with her and vividly remember waiting right outside the door as her entire family was ushered into a small room and given the news that Shawn had not survived.  He was 20 years old and all of our worst, most anticipated nightmares were coming true. 

Not many years later, I had to call Ash early one morning to tell her that I was leaving work and was on my way to my Uncle Bo's house.  Nanny was there alone.  She had gone to check on him as she always had but on this morning, she found him lifeless and thought that he thought he was dead. 
And he was. 
Alone, in his home.  His mother found him and I went to be with her.  My sweet Nanny.

The two people who we loved more than anything, who brought us together because of the deep tragedy that was their addiction, had died. 
Both of their lives ended as a result of the one thing that led me to her. 
Years passed.
She moved away and I moved away.  I got married and she got married.  I got pregnant and she got pregnant.  And we have shared life well. 
Fully.  Wholly.  More than most.

My sweet Ash.
She became a nurse.
And not just any nurse.  A good one.  The best I know.  And I am absolutely not just saying that.  Hands down, this is her calling; what she was created to do.  She loves people and she loves the art that is figuring out what plagues them.  And she loves helping and healing them.  She is smart, inquisitive, articulate, empathetic, giving, compassionate, and good.
She is so good. 

She loves my kids tenderly, as she does everyone. 
But she has always been more tender with me.  She and I are connected through the soul; in a place that I'm not even sure theologically exists.  But it must, because we meet there.
We have always.

Today is Ashley's birthday.
And I wanted to write this story of our friendship here for the world to see because I'm not sure I ever have.  Those who knows us, well they just know.  They know the things we have endured together.
They know that I never left her side, ever, but especially in the days following her brother's death.  Not until I heard her let go of the deep cries that I knew she was holding so tightly inside. 
She finally did.  But I didn't leave her still.
Those who know us know that this friendship goes beyond the meaning of that word and is probably more appropriately a divine love story. 

Most know of the things we have accomplished together and the ways that we give to each other.  Most who know us have watched our friendship play out and have seen how easy it has always been.  A heart sister, sent straight from God. 
What I'm certain that most do not know because I haven't yet been able to write it is the way that Ashley, my Ash, stepped up for me in the days before Mabel died and throughout her death, and in the days following.

For 12 weeks-every single day of 12 weeks, I texted my closest friend photos of the food that my daughter was no longer digesting.  She had stopped sucking and I had resorted to feeding her through her g-tube to sustain her life.  But she would writhe and scream and cry in pain and it was absolutely horrifying.  I would feed her a small amount and 4 hours later, I would go to feed her again and every single bit of the formula that I had put in just hours before would drain from her belly back up into the syringe.  It did not have to be 'plunged,' as we would say.  It was a free flowing inclination of what was to come.  And I was terrified. 

Ashley and I have the kind of friendship where talking to one another is not a necessity.  I can read the tone of her texts without question.  I know the answer that she will give me to my own questions without even asking her.  But I still ask her.  And I need her so desperately. 
She is smart and I literally trust no one more than I trust her...
...with my own life, and especially with Mabel's.

Mabel was not losing weight and nothing was dramatically changing until the Monday before she died.  On this day, I had already decided that I could no longer feed her.  Her body had shut down, it was rejecting food and the decision finally had to be made.  This could not go on.  At some point, ethically and morally I could not continue to allow my baby to suffer.

I hadn't told anyone how I was feeling; I was just praying and waiting.
And then she called...from work.
"Rame.  I think that we need to be done feeding her today.  I think it's time."
I agreed.  I felt total peace.  And we hung up.
And then after work she showed up.
And just like years before when I oppressed her with my own presence [because of my unquenchable love for her and the desire to make sure she was absolutely ok--]
she never left.

She never left my side.
Trying to write this next part eloquently is impossible.

Today is her birthday and I want to give her the world because that is exactly what she gave and continues to give to me every day.

When the time came and my baby was actively dying, my best and sweetest friend, without ever saying a word to me, began to administer all of her medication. 
This was a task that had been solely mine for 4 years of her life.  
She took daily meds.  And she took rescue meds.  And she took comfort meds. 
And I was her mother and her caregiver and so I gave them-every morning, as needed, and again every single night. 
Without fail, Mabel received the medications that would manage the symptoms of her dreadful disease because I spent all of my days making sure of it. 

But when it came time for her to die, Ashley gave me the greatest gift that anyone could ever give another human...
She simply grabbed the syringe and placed the drops into her mouth and she continued to do that for 2 days straight.  Every 2 hours on the dot. 
She kept a schedule.  She checked her breathing.  She set an alarm & she woke from sleep, or she didn't sleep at all. 

In doing so, she let me sleep. A full night actually.  For the first time in such a very, very long time I went to my own bed. I left my dying daughter in the care of my very best friend, the person I trust most in this world, and I slept the kind of sleep that I haven't even had for a single night since. 

In those moments, Ashley did more for me than I can every do for anyone in my entire lifetime. 
She gave me the opportunity to just be Mabel's mom. 

The Thursday before she died, she was resting so beautifully and comfortably. 
My sweet friends and sister and I had made the frantic call to hospice the night before, begging them to help us with a dose and combination of medications that would make Mabel's body stop jerking.  Throughout the night, the dosages that they recommended began working and by the time I woke, she was peaceful and perfect.  For an entire day, every single one of us, including her siblings got to hold her in a way that we hadn't ever experienced before-without jerking and totally still.
That was the greatest gift of my life. 

In terms of dying, our God showed great mercy and our girl showed great beauty.  However, dying is dying and for anyone it can be so frightening.  I had prepared myself but there were times of complete panic and waves of total shock throughout the 48 hours that led to Mabel meeting Jesus.  Each time my eyes would meet hers and I would cry out to her,
"Ash, this cannot go on for long, right?  This isn't going to keep happening, right?  Ash, this is normal, right?  This is ok, right, Ash?

Even now I am tearful and overwhelmed by the strength of my Ash.  Looking at me, in complete despair and having to answer me with honesty and also with a unique kind of gentleness-my God, I know that was probably the hardest thing she has ever had to do. 
And like I mentioned, she has had to endure many hard things. 

But every single time, in true Ashley form, she did answer me honestly and with deep love. 
"Yes Rame.  It's normal.  I've got this.  You hold her.  It's all ok."
And I believed her.  And I let her.   

When the noise of life faded (and still when it fades), she remained (and remains.) 
I closed my eyes at midnight with my baby breathing laborious on my chest and Ashley beside me.  At 5:23 am, that baby breathed her last.  I opened my eyes immediately at the knowing and met hers almost instantly.
"That's it, Rame.  That was it."

"I know," I whispered, as I held my sweet girl tighter and closed my eyes once again.
Our friendship.
This love that we share...
There are countless stories like these between us because we have so closely intertwined our lives.  She is an extension of me, and I hope that I am the same of her.  I would give my life to save hers-literally, sacrifice my own life.  I love her more than anything in this world and I know without a doubt that she feels the same. 

She always, always says that I am the strongest and most brave woman that she knows but I beg to differ.  I thank her, and I listen, and I am humbled but this girl...she has taught and continues to teach me so much.

Everyone in the world deserves an Ash.
She is pure light, full of conviction, and the most generous, compassionate, kind person I know.  Her love is unending and unmatched.  I hope, every day, that I can reflect that kind of love out into the world because truly, that is what we all need a little more of. 

Happy Birthday Ashley Jean Marie. 
I love you oh so much. 
I know that you know (but I needed you to know.)
I thank God for you every day and I never want to do any of this without you.
Thank you for not letting me have to walk any of it alone. 

Tuesday, November 29, 2016

a broken hallelujah

Today was a broken hallelujah. 
One sad moment led to the next which led me down the rabbit hole that is my grief. 
Oh, this grief. 
It wears me out. 

The house is beautiful right now, yet all of the things that I think I should be feeling or have felt in the past during this sweet holiday seem to be lost on me. 
Or inside of me. 

It's been 16 months today since I've held my girl. 
I didn't even know that until I looked down at the computer clock just now to see when I should yell for the kids to get their baths.  I don't look at the calendar with dread anymore.  I suppose that is because I really do take each day as it comes.  Every day is an unexpected ride through the dangerous jungle that is my heart.  I can wake to the sun shining and full of total joy and just hours later feel completely helpless and in utter despair.  The date doesn't matter.  The time doesn't matter.  The people around me don't matter.  None of that factors in to what may or may not arise inside of me at any given point during any given day.

I'm a total hostage to my own self, to my own grief. 

I'm remembering things now.  I think I wrote about it in my last post. 
It's horrifying.  And shocking...
that my baby died.

She had a horrible disease and she died.  And my God, it is a tragedy.

Her life was the opposite, though, which is incredibly conflicting for me emotionally. 
Oh, how I would do it all again to witness and take part in her wondrous life! 
But I wouldn't wish that upon her, or on anyone.  No, no.  I still (as I have always) feel complete peace in Mabel's healing.  I begged God to heal her here and knew deep inside He wouldn't. 
And so- I reached down, down, so deep down and I purposed inside of myself to give thanks. 
The broken kind.  The wailing kind.  The kind of hard thanksgiving that transcends this earth and pounds out to Heaven with fists of total surrender.

"Thank you for her life, Lord.  For every single hard and nasty and vile part of this disease.  For making her mine and allowing me to care for her in every single way, every single day that she was here...
But please, God, come...."

I begged Him to come on that dirt road where the sun was shining on us just right, and as sweat poured from every opening of my body and mixed with the tears...
so hot.  So, so hot...
I told him I was ready. 
"GOD.  Just come."

The very next night, as the sky had shifted from scorching hot rays to a violent black, I remember looking at the stars piercing through it all and asking Him to do the same. 
"Reach through this sky and take her.  Do it.  I am begging you..."

And then I held my baby, the one who they say couldn't understand or comprehend. 
[No, she couldn't.  Not the things of this world, where she did not belong.]
And I begged her, too...
"Go baby.  Please just go with Jesus.  Go to Him and let Him give you rest.  Please Go, Mabel.  I love you more than anything in this entire world but baby you have to go with God. 
Pleaseeeee baby.  Oh God, Please."

There was so much begging and then there was so much mercy.  There was so much silent praying and eyes meeting eyes and hard gratefulness and crying out for this disgusting suffering to just be over.  There was this holy war inside of myself; the very chambers of this wild and torturous heart and inside of this home; the very walls that held her and all the people who loved her.  A kind of holy that the world cannot understand and the church cannot understand and even the most Godly cannot understand. 
A disease raged and a war raged and it was never about what words on a page told me would be right or what the people around me thought may be.  It was only EVER about the living God in me.  And the living God in her.  And the two of us together knowing that our time together on this earth was ending. 

I had to watch her brain destroy her body.  And because of a disease that ravaged her physically, I had to beg my God to free her from this world; in turn, to take her away from me.

What mother has to do that?
What human being should have to?

And what human being should ever, ever have an opinion about that kind of crusade? 
Actually, what kind of human being should ever have an opinion about anyone's own spiritual journey?

In the last couple of weeks I have had some people question the things I am teaching my children or the way we are doing things in our very own home.  I am astonished that anyone feels entitled, at all, to offer up such an offensive form of dialogue. 

Though I have written here and shared our lives with the world, that doesn't give anyone the right to assume that they know my convictions, my opinions, or the principles by which we raising our children.  I understand that by opening up, I have allowed people in but I am disgusted that the rest of the world hasn't seemed to figure out by now that,
what we share on Instagram or a blog is only the smallest portion of our true life.  Or our true self.  Or our truth at all. 

I've always tried to be authentic here and feel as though I have been. 
Looking back, I see how I have changed and evolved so drastically.  Most people don't have that kind of reflective archive of their lives, but it has been my choice to continue writing here as my life has changed because I feel like it will matter to my children one day.  Certainly, it will give them an idea of who I was as a very young mom at 2o years old and who I was during all the years of my marriage to their father, and who I became while their sister was sick, and how I changed after she died, and how joyful you can remain, and how debilitating life can be, and how every single part of it I considered to be grace.  How I gave thanks.  How I loved them.

I am the same person, through and through, but that does not mean that my ideas throughout these years and in the context of these pages have remained the same.  In fact, almost everything is different.  So those of you who knew me when I was living on a military base in North Carolina 11 years ago may be very surprised at who I am now.  Those of you who sat in a pew with me week after week, year after year; who felt like you knew the deepest parts of who I am-
I'm telling you, you do not.

The deepest parts of who I am are buried out on a country road with a little girl wearing a yellow bow in her brunette hair.  The deepest parts of who I am are wrapped tightly inside of myself, like the crocheted blanket I wrapped tightly around her body after I cared for her in the hours following her death.  The deepest parts of myself were offered up to my God in a million, unspeakable broken hallelujahs and Hail Mary's on a summer night, pleading with the One True God to rescue my child from this wretched world. 

I am remembering details now that I don't necessarily want to remember-not just about Mabel's life and death but about a million other painful things along the way.  Painful people, painful words, painful circumstances.  The details have been hidden but can only stay buried for so long, I suppose.  I can assure you, you do not want the chance to have an opinion about the way that I'm living or about the things I am teaching my children.  Because if you did, that would mean that you would have to actually see with your own two eyes the kinds of things that I have seen and you would have to hear with your own two ears the kinds of things that I have heard.  It would require you to make the kind of decisions that I have had to make.  To have an opinion about MY life would mean that you would have to live with the remembering that I have to live with and face it day after day after day.  It would mean that you would have to wake up in this nightmare; the one where your daughter lived and died in your arms.  And it would mean, that even now, you would have to look at these two little kids every single day and continue to parent them through the most devastating and unfathomable grief that a human can experience, all while trying to survive it yourself.   

Rache said it the very best to me a few days ago,
"For a very long time it was evident that Mabel was not made for this world.
Now it is very evident that you're not."

Today I curled up in bed and wept over my life.  Sometimes the lamenting is so deep and painful I feel as though I might be physically sick.  The kind of hurling grief that escapes me now is unmistakable.  It is a sound that was so strange at first; leaving my own lungs but unrecognizable to my own ears.  Who was this stranger wailing from within?
  Now, it is familiar.  It is animal-like.  Untamed and totally wild, but I know without a doubt that it is me.   

Two nights ago, life shouted hope right in the middle of an ordinary night, right in the middle of my living room.  It was a horrifying and beautiful moment that I will never forget.  I wailed then too but with a sigh of relief for this one brave and broken life we have. 
Within it all, if we'll just accept it all, my-what a gift. 

Thursday, November 24, 2016

Remembering Gratitude.

"...maybe you can live a full and beautiful life in spite of the great and terrible moments that will happen right inside of you.  Actually-maybe you get to become more abundant because of those moments.  Maybe.  I don't know how, but somehow?-maybe our hearts are meant to be broken. 
Broken open.  Broken free.  Maybe the deepest wounds birth deepest wisdom..."
//Ann Voskamp\\
Today I woke; Thanksgiving.
The house is a whirlwind of sweet smells and cozy lights.  I blinked my eyes open and whispered gratitude for being able to do so.  The place beside me was empty, blankets scattered around.  'My husband is awake,' I thought, feeling grateful also to be able to finally say so. 

The last several months have been beautiful.  After a really sweet engagement on a rainy morning in Michigan, we planned a completely private wedding ceremony for two months later.  It would fall in the middle of autumn, my favorite season.  The ceremony would be for us and our children only.  After all, that is what this life we share is; the two of them and the two of us. 
And one giant, gaping hole inside of this family where our babe used to be. 

We talked about it long before we actually planned to get married-that if we ever came to that point, it would be a very private occasion.  And the more that it became a reality, the more we knew how important it was- for us, of course, but especially for Nora and Braden. 
In our hearts, Chris and I were living out vows of marriage long ago.  It was never a question whether this man was meant to be my husband and it was never a deal breaker if we chose to not be married by law.  But it was important for both of us that these kids felt security in their lives and that before God we made a commitment that was pure, honest and lasting to each other. 

It has been really sweet experiencing all of the emotions that led to me becoming his wife.  And as always, it has been challenging at times, full of consuming sadness, and terrible missing. 
Our girl only knew this man as her 'da' and never would have understood our union.  But I find some peace in knowing that things really are the way they are meant to be.  In that peace, I also feel a lot of sadness knowing she wasn't here to be a part of it. 
This fall has brought a much different season to my life in more ways than one.  I am working at a job that I literally love.  I am working because I enjoy it and because it helps get me out of the house.  I am working because I can and that feels good.  It has propelled me forward in some ways, on days when I may have otherwise stayed in bed.  This time last year I was working a job too, but one that was based more out of necessity of routine.  This year, I can be alone and not on such a definite schedule and still be ok most days.  That is both rewarding and feels like an accomplishment but also feels heavy at times. 
How can I be ok when she isn't here?
There is guilt.  There are conflicting emotions splashed everywhere inside of me.  Quite literally like a canvas that one may call art but another sees as nothing but a total mess of paint.  I can almost never feel one positive emotion without also feeling a contrasting negative emotion. 
I accepted long ago...such is the life of the griever.
Overall, the kids are doing well. 
Nora is distant and distracted as usual.  It's always been her way of coping and though it bothers me, I see that it's practical and just the way her brain and heart work.  It's just different than how I grieve but that doesn't make it wrong.  I'm working on finding ways to connect with her through it all. 

Braden, for sure, grieves more like me.  He is open and wild in this grief.  He talks about it, laughs about it, cries about it often.  He is very much grieving parts of his life that are relevant and as he works through that, he lets it go and really digs in deeper to the next part in the process.  Currently, as we were abruptly catapulted into the holidays he is missing his step-mom a lot.  He cries often about how their lives are so different without her and missing the little things that are just part of grieving someone who was once part of your every day and now is not.  It's hard to watch and I struggle with not feeling angry FOR all of the loss they've had to endure, but I sure try to be nothing but loving and supportive in those really hard, dark moments. 

Many of you have been reading here for a very long time and because of that it is no surprise to you that when this time of year approaches, I slow myself down and try to really embrace the quiet.  It has taken me many years and a lot of loss and grief to appreciate being along and digging into those really dusty places of my heart that may need a little bit of work. 

I recently found my gratitude journal that I started last year and feel so thankful.  Many of the months following Mabel's death are nothing but a very grey blur in my mind.  I took a lot of pictures and wrote a little but during that time I really did try to jot down little things throughout each day that I was feeling thankful for.  Now, thinking back on it, I can remember almost everything I wrote.  It was good for me to find it and to see that those memories are not lost forever, they're probably just tucked away in a safe place where my brain and heart conspired to keep them until I am ready to remember again.

The last several months have been mentally difficult at times.  Inside of my own self a war is always waging.  I really am remembering things that I don't necessarily want to re-hash.  Things I have made peace with about Mabel's life and death are constantly brought to the front of my mind and I have to literally talk myself away from the memories.  Again, guilt. 
Because I so badly want to think about her but the questions that arise are too painful and I'm just not always ready to face them. 

Aside from remembering, I realize that I truly have forgotten so many things.  Things I never would have dreamt I would have forgotten.  If ever there is a time when another parent asks what medications we used to stop seizures, I have to ask Ash or Rache. 
Thank God they know.  They know as well as I do.  I'm grateful because part of that coping mechanism is to just simply let myself forget so that I can continue to live. 
Without those beautiful skills that God gave our bodies to grieve and cope and survive, no mother would after losing her child.  There's just no way. 
I'm currently reading Ann Voskamp's new book, 'The Broken Way.'
If you remember, her first book literally saw me through the worst days of my life-both when Mabel was here and so very sick, and after she died and I re-read it again. 
This book is now speaking to my heart in a whole new way, helping me to see that in this very broken and mangled state of missing my daughter, I can still really go on and live a full, rich and beautiful life that is absolutely saturated in joy. 

Today that is what I feel. 
Joy for second chances and redemption.  Joy for really rambunctious, healthy, often annoying children.  Joy for a home that I love and food that smells delicious.  Joy for a husband who loves me and all of these children well.  Joy for a life that is far greater than I could have imagined.  Joy for a hope of Heaven; an eternity where our little girl spends today and every day until we meet again. 

Happy Thanksgiving, friends. 
Today, may you find yourself reflecting on all of your many gifts.  May your table be full of all the things that matter and free from all distractions that would cause you to slip out of the present moment. 

And today, may you take time to remember where you have been.  Embrace it. 
And show gratitude for where you are.  Even in the hurting or the hard, God is there. 
"But first, remember, remember, remember..." --CS Lewis.