Wednesday, January 28, 2015

to everything there is a season.

Six months ago, after giving it some thought, I decided that I was going to try to attend an 8 week Certified Nursing Assistant course.  It would be a few hours each day, 4 days a week.  Chris is here to help with Mabel and in my mind I was thinking that it would be a practical way to direct some of the energy that I use stressing, worrying and caring for Mabel into something that would eventually give me the ability to care for others.  
I thought about it, prayed about it, talked about it, even paid for some of it.  This would give me the incentive to really try.  I wanted to get out of the house, interact with other adults, use some of the medical knowledge I have gained and hopefully learn a little something along the way. 
I think that I came to a place where I felt like things here at home were stable enough for a time that I could direct my thinking toward the future and set some goals for a life I may want to lead years from now. A life where I see myself in a career that I would enjoy and thrive in.  A life where I am able to use the gifts God has given me outside of the home and pour into the lives of others.  In my mind, it was always just meant to be a trial.  If I could finish, I would finish.  If I couldn't, I wouldn't push myself. 
In this ended up being a very emotional reminder. 
Monday, I started.
I attended class for two days. 
And I'm not going back.
Sunday night, the night before I was set to begin, I felt so much anxiety.  It wasn't really about leaving the kids because the big kids are in school and Mabel was home with Chris.  It was more so within me; trying something new, and diverting from my typical schedule.  But then before bed Nora cried and explained how she was worried about me going.  How she worries about how I feel and where I am through her day.  My heart sank.  I told her that it was just important for me to try, that I would be ok, that many mommies go to school and work and everyone would be ok.  We prayed and she went to sleep and woke up fine the next morning.   
Class was fine.  Truly.
I would have learned and I would have been able to give insight in ways that other student's probably won't hear elsewhere.  It wouldn't have stimulated or challenged me necessarily but it would have been a good outlet. 
But I came home to a fussy Mabel on Monday and knowing what I know because I've never left her side, I could tell she wasn't feeling well. 
Almost immediately I knew that would be the end of that.  
Yesterday I woke up and went back to class.  I had a terrible headache which I'm positive was caused from stress and anxiety.  I took some meds to start my day and was still feeling determined to push through.  But I knew it wasn't going to work. 
I got home and Mabel cried for the entire day.  She seized and eventually puked.  
I carried her through the house, head pounding, back aching, stress and anxiety on the surface but pouring out of every single part of me. 
Finally the tears came. 
Hard, hot, fast.

None of this will be very articulate because it's hard to explain something that is so unexplainable and nonsensical that our minds can't even comprehend.
My baby is dying.
She's still dying.
She is not actively dying today, as her lungs sound good, she isn't running a fever and all of the other signs point toward her living another day. 
But she is going to die.
Likely in her childhood and likely after a very disturbing, gruesome, full-of- suffering kind of illness shuts down her immune system and her brain finally says it's time to stop waking, seizing, crying, laughing, and living.

And you know what? 
Sometimes I forget.
I am not quite sure if it's because I am with her every day.  Is it because my life has become so skewed and tainted that the very absurdity of the fact that she has a terminal illness is lost on me?  The very fact that her brain is actively shrinking and her muscles are atrophying just as quickly is just part of my nonchalant talk and truth.  It has become so robotic for me to explain that it almost saddens me to hear it come from my lips. 
"Ramee, introduce yourself to the class and tell us a little about why you're here."
"I'm Ramee.  I am a single mom of 3 children.  My youngest daughter, Mabel has a rare, terminal brain disease.  She will likely die in the next 2 years.  She has been and continues to be on hospice care in our home."

I cried into Chris' chest so hard last night that I felt the strength of his body shift under me.  Sobs overtook me and the horror of it all flooded me wholly.
It's been a very long time since I let it.
She's dying.
What am I doing? 
She's dying and she only wants me all of the time.
And I only want her. 
I am so wrapped up in her and she in me that we don't leave each other-not ever. 
Like literally not ever.
She's an extremity on me. 
She's attached and I'm attached and I am not detaching.
I am not letting go and planning my future so that I'll have something to do when she dies.
That sounded like a good plan but that's absurd.
She's going to die but she isn't dead.  She's here in my home, in my arms.
I can hold her.  Why would I choose not to hold her?
Poor Nora and Braden. 
They probably forget too.  But then I'm sure they remember.
What am I doing?
Nothing is as important as this.
Nothing is as important.
Nothing will ever ever be as important.
Ashley came. 
She held me.  I cried harder.
We were meeting the village for dinner. 
I wanted Becky.  I really wanted Becky.
The days in this house are so long.  They truly are.  They are sometimes so hard and exhausting that I can't think straight.  But I realized yesterday that my threshold for stress has grown.  It has accommodated me.  It has abounded for my life.  And when I added just a little something more, something that caused a little bit of stress and a tiny bit of anxiety, it was too much.
System crash.
Shut down.

This journey has always been about God shaping me and molding me.  It's been about teaching me.  It is the very nature within me to want to look ahead to what I can do next.  Where can I go?  What can I change?  Who can I impact?  What can I do?
But four years ago, after years of letting me wander and rush through my life, God crashed in almost as tangibly as an earthquake full of destruction and put a stop to it.
I learned how to find contentment and peace with just 'being.'  Trusting that this was His plan and that I was directly inside of His will.  Knowing that there was a reward for what He had called me for. 
But honestly that all made a lot of sense when I was inside of a marriage where that was decided between the two of us for our family. 
Now, I am not inside of that marriage.  And my whole life feels like a series of events that I have had no say in, no control over.  And as frustrating as that is; as utterly infuriating and enraging as that is, it is also very humbling.  It feels like God still plucks me from my own life and reminds me that He is in charge and that I need to just. sit. still. 
I need only to do what He has entrusted me to do.
And that is to be the very best mom, the very best friend, the very best sister, the very best companion, the very best daughter, the very best cousin, the very best human that I can be.
And I am my very best, wrapped up in Him, wrapped up with her, in this home.  
I think I struggle sometimes with feeling like I don't contribute to life outside of here. 
Not financially, but just in general. 
What do I give to the world?
But then as my mom gently reminded me, I'm giving the world to the only one's who need it.
I am giving of myself to them every single day and they will remember. 
It will be important.  It will have mattered. 
And though it feels very frivolous day in and day out.  Though it stretches me and challenges me to just 'be,' I know that in the midst of that I am teaching them the most important lessons I can.  Lessons that can't be learned at school, in a textbook, or by an educated teacher.
Lessons of life and death.
Empathy, and courage.
Longsuffering and Grace.
Triumph and tragedy.

What happens here matters. 
It has always mattered and it will continue to matter.
I will never look back and regret spending my days exactly how I spend them.
And so many people love and support me. 
I feel surrounded constantly.
You support me if I'm home, enduring the days of crying, thrashing, biting, seizing, puking, sadness, tears, frustration.
You support me if I say I'm going to try something new.
You have and continue to support me in every choice, in every step along this journey.
And you'll never know how grateful I feel for that. 
It is what pulls me through these reminding, altering, very difficult moments.  
Several people have said that I have my whole life to work or go to school or do anything I want to do.  That may be true.  I may have an entire life to 'live' when Mabel isn't here.  But I can't imagine that will feel much like living at all.
I can't imagine that I'll want to go forward and accomplish those same dreams that I once had. 
My dreams are so much a reality right now. 
So I may go back at some point.
But I very likely may not.
And all of that just has to be ok. 
Because life just is what it is.
Mine just happens to be a little heavy, a little hard and a little sad sometimes. 

But it is wonderful, full, rich, and beautiful most of the time.
I have to remind myself that this season of my life is everything.
It is the entire reason that I am able to glorify God fully.  Because she has taught me how to do that. 
He uses her to teach me so much.  
This year I hope I have taught my children the things that have mattered most. 
I believe I have.
This year I was able to wake with them each morning and put them to bed each night.  I was able to be at every event and every appointment.  I was able to hold them when they cried about change or because they were scared.  I was able to keep Mabel well, keep her happy and keep her home.  I was able to go on dates and pour myself into a relationship that I know is directly from God [because honestly....]
I was able to sit with my grandma as she entered Heaven and hold her hand, telling her how much she was loved.  I have been able to be with my grandpa many days since and love on him, support him, sit with him, remind him that he is not alone. 
I was able to feed and take care of my great grandma in her final days on earth as well.  I was able to pick up my brother when he needed a ride, hold birthday parties for nieces and nephews that will always, always be mine no matter what, see my sister when she has days off, and visit my uncle in the hospital when he needed me to be there. 
I was able to be present. 
I was able to be available.
I was able because He created me for this. 
Not for school.  Not for a job or a career.  Not for now and maybe not for ever. 
"To everything there is a season..."
And this season is my really beautiful life.



Kate said...

You are an amazing person, Ramee. I think you made the right decision to be home with Mabel.
The most important things in life is spending time with our loved ones who need us the most. You are an inspiration to so many. God bless you!

Paige Smith said...

This is such a beautiful blog. I love your family already, so much just by reading your posts. It must be so exhausting but I am sure really rewarding to be working with Mabel. Best of luck. senior care