Friday, January 17, 2014

Batten Reminder.

The last few days have been odd to say the least. 
I haven't felt well for weeks.  My back is in some sort of constant pain and nothing seems to help except the heating pad.  The last two nights with Mabel have been really difficult.  Two nights ago she cried almost entirely into the morning with several full body seizures.  And then sadly, there is just normal day to day stress (and really unnecessary outsourced stress) to add on top of it all.  
I deactivated my facebook this week. 
The truth is that it just gets to be too overwhelming for me.  My newsfeed is loaded with very true, very heartbreaking stories.  There are children dying from batten disease weekly; children that I now care deeply about.  There are families dealing with other rare disease that I love and keep track of whose children are quite literally suffering and regressing.  And then there are people whose lives and issues I want to validate but some days just can't quite figure out how to do that when it all seems so trivial in comparison.   
I still haven't figured out how to mend myself to the rest of the world.  This great big world where the valley between trivial and altering is vast.  I am practicing it every day; how to co exist here with people whose lives are unscathed by the type of heartbreak that I'm aware of and will endure.  It doesn't mean that their lives aren't full of their own terrible losses and devastating truths.  It is just different and that makes it difficult. 
But I am trying.  I so badly want to feel for others so that they will do the same for me.  It is crucial that empathy be a part of our existence to the point that we breathe it each time someone speaks to us.  Otherwise I feel like we are dishonoring ourselves and our own stories.  Without empathy we tend to be a very closed off, very close minded, very terrifying people.  

My Mabel.
She sure has taught me what it means to be me.  She sure has grown me and changed me. 
But this week she has reminded me, in between the smiles, that there is still a very ruthless disease raging inside of her.  I watched her body stiffen and twitch for hours late into the night and I couldn't believe how unable she is to control any of it.  I sat, still, and reminded myself that I am the same. 
Unable to control any of it.
I am incredibly lucky to be able to share these quiet days with her.  I sweep her up in the morning and sometimes don't put her down until the evening.  We sing and we talk; dance and lay, covered by my quilt for hours at times.  She kicks and coos and I watch and listen.  I am engaged and fully present with her and that is a gift that I am so thankful I have given myself.  The distractions of this superficial world have quite naturally folded under her spell of me.  I am wholly hers.
I have done so well enjoying this time where she has been happy and well that some days I feel like this little life is very normal and that we could go on like this forever.  But then I have a reminder night where I feel the toll of truth rain over me yet again. 
That is so hard.  And this week it has left me so sad.
It's hard because as the rest of the world goes on celebrating life, planning for a future and the promises of days to come, I know deep inside of myself that I will eventually be planning a funeral for the brunette whose perch is my shoulder.  The rest of the world has a disconnect; a way to move forward, and they should.  Such is life and it's a beautiful gift to be able to do so.  In many regards I have done and will do the same.  I look forward to those things that bring me hope of joy and hope of new, beautiful beginnings.  But I also find myself at a standstill of sorrow when I think about what the days of my future are sprinkled with. 

What gets me through is the knowing that they are MY days. 
My days to share with her now; days to devote to her and care for her.  And they will still be my days when she is no longer here.  My days to continue taking care of the details that are important to me surrounding her flawless, perfect life and my days that will be filled with deep, meaningful, passionate grief. 
There are not many people in this world who experience the kind of depth that I do in one single day, let alone a lifetime-just by being her mom. 
I feel as if I have already lived a dozen lifetimes and yet, I am just barely surviving this one. 
Her good days lately have been plentiful.  The last several months have given me that respite that I so desperately needed in my mind and body.  But this week has shaken me once again.  It has left me cold, physically achy and desperately sad.  I have cried more often, felt my stomach drop more easily.  I have slept more and spoke less.  I can't believe how quickly those feelings of total withdraw can return.  I know now that it is absolutely a fight or flight mechanism and it kicks in from somewhere far beyond my control. 
She is here.  She is crying. 
I take flight and emotionally disappear inside of myself and inside of the sadness for awhile. 
But the distinct difference that I feel between now and even one year ago is that now I am capable of the emotional fight to stay present.
 I won't simply surrender to the flight.
 I have learned that everything I am feeling can coexist.  Everything that is happening in our home, her body, our lives, my mind; no matter how completely separate and opposite the emotions may be from day to day-they truly can go hand in hand with one another.
They have to, after all.
Because everything that we're experiencing is the only truth of this life.
So this week...
She tried so hard to say 'mom' and after a very long period of time, her little lips finally squeezed it out.  I captured it on video and shared it on instagram for the 'world' to see.  It was one of the most joyful moments ever.  And I was so proud of her.
And then later in that day there were seizures and crying. 
They haven't stopped since.
And I feel deep despair, palpable anxiety and painful sadness 
Together, all of these things make up my days.
They just do and that's ok. 
Exhausting, but ok. 
So I suppose to say this was an 'odd week' was slightly inaccurate.  This week was completely typical in my corner of the world.  I just fell back into a "normal" that didn't consist of crying and seizures for a couple of months.  I forgot that this is what Batten Disease really does look like and even much worse.  I'm living it and I need the reminder every now and then. 
Praying for better days to come...


Andy and Jenni said...

I liked the "perched on my shoulder" line. And I bet that's why your back hurts ;)
I know your heart extends in more directions than you can reach, and I'm glad you're giving yourself permission to let some strings go untethered for now.
I know that cry - the one that hurts a mama's soul more than her ears. I hope it ends soon, and that you and Mabel both find some peace.

Tina said...

Completely understand, Ramee. When you're dealing with the kind of tragedy that most people see as an unimaginable "worst nightmare" come true, a gulf opens up between you and the rest of the world that never completely closes again, no matter how hard you might work to heal. You get better at pretending to be "normal" but the truth is that you aren't quite occupying the same space as the people around you. Do what you need to, to keep going and be present for Mabel and yourself (and the redheads) in this endless yet too-brief time. xx

Paige said...

I know this is so "cliche", but I cannot imagine what you are going through. I can tell you this, though, that you are in my thoughts daily. Your children are precious and so wise for their ages. I can only hope my daughter grows up to be like them, and be as caring for others as your older two kids are :-) Sending tons of love your way, dear.