Monday, January 21, 2013

heavy monday sentences.

The last week was brutal for me.
Mabel cried non stop except for one day in which she seemed a little dopey from her medicine increase.  I was so thankful that she was awake and smiling but not crying.  And then last night we had dinner at my  mom's and she was perfect.  I'm always so thankful when she is herself with everyone else.  It's hard that it ends up being so much work for me, but she brings a light to everyone who is around her and when they get to see it, I know that they leave with the feeling that they encountered the purest and truest form of love.  

That is so important for us as humans.  We need the kind of interaction that is true and life changing.  It's the only kind, I believe, that represents Heaven fairly.  In her, I see a brief glimpse of what it must be like to know our Savior.  

Meek, gentle, pure, whole, beautiful.
There are many nights that I lay her to sleep and wonder if she'll wake up the next morning.  But this morning when I opened her door to check on her, I knew she would open those eyes to me.  I just felt it.  
She and I have this connection that is really indescribable unless you have witnessed it.  I can feel her breath sometimes when she is not breathing on me.  I hear her cry when she is not around.  My arm feels weight of her body when I am not holding her.  She is embedded in me.
With all of the talk of the presidency and the justices and injustices of our country lately, I have felt a deep need to separate myself from social media.  There are important things happening all around us, true.
But what I can't seem to understand is that, because a baby has a disease that only a handful of other children have had or will have, no one wants to step up and fight for a treatment or a cure.  Because there are not hundreds upon hundreds of 'Mabel's' suffering from this infantile form of NCL, it isn't worth the time or money to proceed with testing and research.  Some is being done and we are making great progress, sure.  But even in our community the infantile form of this disease will not get the attention of the older forms because it's just more rare.  
It makes me feel like Mabel's life is dispensable.
And that is a true injustice, friends.  

Gun laws?  Gay marriage?  Government conspiracies?
Enough already.  Let's talk about something that is happening right in front of our faces.  Instead of looking away, yet again, let's truly look at her face and the faces all around us who deserve to LIVE.
We desperately need to stop focusing on trivial things that will pass away and instead focus on eternal things that matter.  The people of our country need to wake up.
And yet, they will not.  And I know that.

No one understands how difficult it is for someone like me to log onto a site like facebook and see such mundane, insignificant talk.  Rather than practice self control just to look at the pages I have learned to just shut the computer and walk away.  Because the truth of the matter is that no one else feels the desperate need to shout from the top of their lungs at every moment that their baby is sick.  No one else feels the gut wrenching need to explain how this disease will progress and how it just isn't fair.  Although empathy may be felt from those around me, they also get to go back to living and not confront these same God-awful feelings every moment of every day.  They get to involve themselves in mindless chatter and silly jokes because that is what is on their mind.  It isn't cluttered with heavy, overloaded, bombarding thoughts of a reality that is grim and inevitable.  And part of me hates them for that.  
Part of me hates myself for it too.  

I would give anything for mindlessness to consume my thoughts for just a brief second.
Just even one.

I am not naive to the fact that people don't want to hear about rare disease all the time.  I know that they want to be left to their less heavy happenings.  I also know that in my lifetime there will probably not be a treatment much less a cure for batten disease.  
Because it feels impossible and overwhelming, and because people only want to hear so much...too often I tuck myself back away in this house and keep quiet.  
It feels too big.  Too outlandish.  

The thing about rare disease is that unless someone makes enough noise to tell you about it, you wouldn't have known.  Think about it.  You understand cancer.  You probably know someone who has had cancer if you haven't yourself.  It's everywhere and it has treatment options so of course we know the words related to the illness.  But with most rare diseases, you just don't know because it's not happening enough to make that kind of noise.  
None of this is coming together beautifully.  
These are just random thoughts for a Monday morning that I'm rambling so that they are out of my head and I can move on.  I'm not trying to prove some point that I haven't already tried desperately to prove.  I'm just looking down at my girl on the floor and thinking about how unfair it all is for her.  
And how small I feel in the realm of being able to help her.  And how awful that feels.

Thankfully for us, Mabel's disease actually has a huge support group.  We have friends who are raising thousands of dollars each year to help fund research.  Clinical drug trials are underway.  We have Centers of Excellence spread throughout the country and even abroad.  We have an actual organization dedicated only to NCL (
We have a great support system.
I feel incredibly blessed, that although we landed with this devastating diagnosis, we at least have the kind of support that sees us through each day.  

Many other children and parents don't have that kind of support.  They are alone and scared with nowhere to turn and no medical professionals to help because no one knows enough about most of these diseases to give good care.  It's heartbreaking to me.
And that's why I'm on a little soapbox this morning-
for them.

Out of anger.  Out of sadness.  Out of fear.
Those things don't go away once you have experienced them and that is the definition of true empathy.  
The kind that doesn't go away with the next mundane task you're given.  True empathy stays with you at all times.  It haunts you.  It consumes you; for others.

I know so many of you have that kind of love and empathy for our family.  I know because I see it in your eyes, feel it in your hugs and experience it with every talk.
I love you for that and I'm also sorry that you now carry it.
As much as you're here for me, I want you to know that I also empathize with you.  It isn't easy being on the end when you watch someone that you love suffer and grieve.  
I've been on both sides and I understand.
Just like with everything in life, there is a time.
Some days I feel the need to talk about Mabel publicly and share as much about her with the world that I can.  Other days I know that the private and the quiet is best.
There's a balance and I've learned it well.  
I trust the Spirit inside of me to guide me in my choices; the One who knows it all anyway.
I just hope that in all I do, whether quiet or with noise, our girl is not easily forgotten and the other children can be known as well.  They are alive and they deserve to be known and loved.  
When you love them, you are changed.
And change is oh so good.


crissy monet said...
This comment has been removed by the author.
crissy monet said...

i empathize with you!! there is never a moment that i don't feel like NOTHING IS BEING DONE!!! in my case, i don't even know what it is that something can be done about.....but there always, always, always needs to be MORE done. you are doing SO much, even if it may not feel like it, you are doing everything you can, we just need help.....what can i do??? i will do everything i can to spread the word, and i will keep on loving you and little sweet mabel from afar. <3<3