Friday, March 17, 2017

sweet sedona, save me.

Before writing I want to first say 'thank you' to each one of you who reached out to me regarding my last post.  Putting my own health journey out into the world felt very vulnerable.  There is something very unique about using the skills I gained while advocating for Mabel (and my other children) and putting that same knowledge to use when finding answers for myself.  It has been an exhausting challenge but knowing that my blood-work is in the fine hands of Dr. S has certainly put my mind at ease, at least for now.  There is literally nothing more to do except to wait.  And I have been here before; I remember it all too well.  I remember that there is growth and change that occurs here, too.
I'm going to try my best to embrace this season.
----
Chris and I just returned from our second trip to Sedona, Arizona.
Our first trip was last February.  It was unseasonably warm in Sedona during that trip and we had a remarkable time.  It was just a couple of weeks before my foot surgery and I specifically remember saying that I was going to give it my all before going into the healing phase of that journey.  Little did I know that my foot wouldn't heal correctly or ever feel quite the same again.

Last year we were in Sedona during the 9 month anniversary of Mabel going to Heaven.  We chose this place because while researching it, we poured over dozens of reviews and listened to many suggestions; all which led us to 'the place of healing,' a magical world where energetic vortex's were not just fairy tales but were actually responsible for changing people's hearts and lives.
And there was absolutely no doubt about it...we left Sedona last year VERY changed.

Looking back, last year's trip was more beautiful than I could have ever dreamed it would be but I realize now that it was also still a very 'foggy' time for me in terms of grief.  This year, (this winter, more specifically), has been like walking out of one horrifying tunnel of pain and straight into another.  The thick coat of durable coping skills that once covered me like a film were slowly removed layer by layer in these cold, awful months, peeling back pieces of my heart that have never been exposed- not even to my own self.  

  I'm not sure how to describe it, only to say that some seriously heavy grieving took place.  And I believe that was true for each of us in our own ways.  Our home and our hearts shifted big when the autumn leaves fell and the cold settled in.  I could almost feel it in my bones, just like the physical sickness that was also changing me.  

The two weren't the same.  One may have certainly contributed to the other--grief to the sickness, and sickness to the grief, but the physical changes that took place quickly this winter were very much part of something separate.  If all else fails, I know that for sure. 
I stopped writing this winter because honestly, what more is there to say than I have already said a million times? 
 My baby died.  It was horrific.  She lived too!  But the suffering she endured?  That was almost more horrific.  I miss her and that is horrific.  Sometimes I can feel her right here with me, right on me and inside of me and that is horrific.  Sometimes I can't remember the way she sounds or her distinct features or what it was like to have her here with us at all and that is horrific.  I am in deep pain every day trying to cope and live and grieve and love and that is all very horrific.  It feels like the whole wide world has watched and listened and not a single person can possibly comprehend the words that I am saying anyway and...
you guessed it:  that is horrific.  

So I stopped writing because it feels too big and too lonely and too horrifying.  It feels like old news and an old life and old sadness and so much about me that everyone must surely want to stop focusing on it.  Surely they must want me to get better or to be better by now or to just simply be who I once was.  But I'm not.  I'm so irrecoverably changed that I will never ever be able to think or look or act the same ever again.  Grieving yourself while grieving your child is an incredible challenge; one far too enormous to try and explain.  
 ---
The enormity of it all spreads perfectly across an Arizona skyline.  
It is the only thing in the entire world that I have encountered that even comes considerably close to the awesomeness of my pain.
And the majesty of our great God who carries me in it.

I also stopped writing this winter to process several things more privately. 
My sister is having a baby and honestly, I just needed time to let that settle where it may.  It's complex and I can't yet articulate it.  I'm not sure that I will ever be able to in just the right ways, though I sure hope to be able to one day because this new little life is part of the bigger story of our entirety.  He (yes, it's a boy!) is bringing about parts of my own healing that were necessary.  But some of that heart work is wicked.  It's harder than one can express, (even though one did try...in therapy...a couple of times.)  

Grief and love and pain and redemption and salvation-they're all so similar, I'm learning. 
 They are all so relative, and they can certainly coexist but they are absolutely not mutually exclusive.  This makes up a complexity that once again, isolates individuals from others because it all feels SO personal.  SO intimate.  SO lonely, at times.  

Writing about any part of my grief during a time when my sister has every right to feel elated seemed (to me) very unfair of me. It seemed selfish to keep writing all the same things that I have written so many times before.  I thought that I could reign it in and really try to let her have this time in life to experience the joy that she has waited for and deserves without it being sprinkled with my same gritty, grainy sadness.  

I have since come to realize that Jeni never asked me to do that.  She never asked me to not write or  talk about how I'm feeling.  I thought that I was being mindful and considerate of her, but in doing so I totally took that on without her even knowing it.  
And I know now that that was an unfair thing to do to myself.  
Expressing my feelings about Mabel's life and death is critical because she is mine.  And though there is a new little love entering the world that will bring us such new and exciting joy- he also doesn't, can't and won't take away the deep sorrow or pain.  [and buddy, one day when you're reading this, I hope you know that I would never expect that of you.  You will exceed ALL of my expectations just by being alive!  Just by being you!]
So among many new health challenges and a few not-so-new emotional challenges, I found myself exhausted in every way and in need of refreshing.  My sweet husband (gah, that never gets old) planned our entire first trip and also this, our second 'honeymoon' trip to our most favorite place.  

Sedona does save me. 
So there are many theories about the actual town of Sedona and all of it's healing powers.  If you haven't, do some research!  What I can say from personal experience is that each time we have gone away and come back home, we have felt renewed.  There are specific places in the actual valley and on top of actual peaks where the air itself very much feels different.  There are several known and named 'vortex's' in Sedona but our tour guide on this trip explained that she grew up in Sedona and in her mind, everyone should find their own place that brings peace.  

Chris and I have at least one place, on the very top of Cathedral rock, where we felt a shift in our spirits together.  The wind blows differently, the air itself smells differently.  This trip, in order to get to that very place, we hiked close to 8 miles.  Reaching our destination was worth it for so many reasons.

The sunshine in Sedona is unfiltered.  The sky is breathtakingly clear every day.  The sunset casts an orange glow on all of the beautiful rocks-so much so that you never want to look away.  People are happy; genuinely happy to just be alive.  The simple pleasures in Sedona are waking up, breathing air, and using your body to do any and everything you want it to or that it can.  

I was SO proud of my body on this trip, though it is wrecked now for sure.  I pushed myself because I knew that after these few days away,  I could come home and totally rest.  It's important for me to note that for the first time since Mabel died, I do not have an obligation of any type (as far as a job is concerned.)  My sole focus is on being well, no matter how that looks or what it means-for myself, for my husband and for these kids.  
 I am so grateful to have a partner who wants that for me too, and who takes really good care of me so that it's possible for me to simply 'be.'  A gift I've never been given but have always needed, indeed. 

On this, our special trip, we hiked long, far, high, and wide.  
We ate really incredible food (and too much of it.)
We laughed more on this trip than we have in such a long time.
We really looked at each other and we smiled a lot.
This year, I realized, we no longer keep track of how many months it has been since Mabel died.  That made me both really sad and really proud of us; and I'm not exactly sure why.
(I think because we are really good at living in the moment...but somehow that brings such guilt too.  Complex, I know.)
We made it a point to visit the Chapel of the Holy Cross and I was so overwhelmed by all of it's beauty.  The incense was a familiar and comforting smell that brought me directly back to the church of my childhood.  It made instantly believe that all memories of 'church' should smell just like that.

I cried for the beauty in that single moment, sitting on the pew beside him, and being so very present.  
I cried for so many of the choices I made throughout my life that took me away from my childhood religion.
I cried for so many of them that led me right back to the peace that it somehow still brings, knowing it is forever mine; no matter where I wander, what I explore, or where I end up.  What a precious gift given to me by my parents, and by theirs.  
I cried because the wonder of this life is indescribable.  
I cried because...our baby.  How I miss her.  For me, for them, for him.  

And then we left and we hiked and hiked and hiked and I let my body work and sweat despite the pain, even knowing that it could be a really terrible choice in the days to come.
---
One of my most favorite things that we did on this trip was hike up Soldier's Pass and into a canyon that overlooked the entire valley.  The cold walls of the cave felt familiar in a strange way.  It was refreshing and energizing and powerful. 
All over Sedona it is common to see piles of stacked rocks.  Some say they are to help mark the trails.  Some say they are to mark vortex's.  Others say that each rock or even each stack is in it's own right, a prayer offering.  In the cave, I stacked my very first and only, simply thanking God.
For this moment.  This day.  This trip.  This body. This remarkable life. 




There is so much to say about Sedona itself.  There are so many beautiful and vivid details about our trip that I hoped to share.  But so much of it is sacred too, and can't be explained.  

What I can say is that it was necessary and perfect.
It changed my heart once again.
I came home more in love, a little more clear; even more open; a lot more free.  

If Sedona were a human she would be my soul mate.  
 I will wait every day with bated breath to meet her face to face again. 

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 some...to 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 because...you 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.