Thursday, July 17, 2014

Tuesday, July 15, 2014

Last day of 3 years old.

If I could live a hundred lifetimes just to hold you each day, I would do that. 
If I had to walk the width of this world in order to smell your skin; your scent, I would do that.
If I needed to scale the grandest wall, swim the deepest waters to hear you breathing, nothing could stop me from doing that.
 
Little girl, you hold my heart.
Four years ago on this very night, I was preparing to meet you.
For months I imagined what you may look like.  Would you have your sisters lips or your brothers hair?  Would your ears curl just so, would your belly button push out?  I had dreamed of all the ways that I would rock you, hold you, swing you and feed you.  I could almost hear what your little voice would sound like saying my name and I dreamed of days where you would toddle around me, causing the same kind of chaos that your older siblings were good at creating.
 
It was as if my whole life was leading up to this; your birth. 
My sweet Mabel,
from the moment I saw you I knew nothing would be quite like I had dreamed it would be.  In so many ways, it was so much greater.  In so many ways it was much more intricate and even sad.  But every single day since the day that I first laid eyes on you has been a beautiful, magical day.  You stole my heart and you have completely consumed me since. 
 
Nanny always says that for an entire year I didn't leave the corner of the couch, holding you.  I nursed you for hours and I never wanted to put you down.  Your sweet, sleepy body was my ultimate concern and has continued to be.
Oh Mabel, I spent this day with you as I do every day. 
Today I was specifically monitoring your every move and pattern because we started a new seizure medicine and I'm documenting your reactions closely.  This isn't unusual.  This is how I've spent most of your days on this earth.  This medicine is a specific drug that I requested we try and although the Dr. doesn't seem to think it will make a difference, I feel like we no other choice but than to give it a shot.  You see, over the last several weeks you have started to have new seizures.  You're acting slightly out of your ordinary.  And although that may mean nothing, it could also mean a whole lot. 
So I watched.  and Listened.  and watched some more. 
I want to watch you forever.
Although it seems as if I should be an expert on 'getting through' birthdays with you by now, I am not.  I sit alone in our house tonight listening to your squeals and laughter and I feel a deep sadness.  How does a mother celebrate the birthday of her daughter when it is essentially a countdown to the end of her days? 
 
Batten Disease. 
Type: unknown.
Symptoms started:  2 weeks of age.
Prognosis: likely 4-6 years of age.
 
The words haunt me.
In fact, I have been saying that you are 4 for many months, maybe to emotionally prepare myself for the idea that you truly are another year older.  Quite possibly one year closer to Heaven.
It's hard.  And hasn't gotten easier. 
Mostly for Nora and Braden, and also for the people in your life who love you more than I could ever express, I have always made it a very huge point to celebrate this day elaborately, with reckless abandon.  Not because you know, or because it feels good to me, but because you deserve to be celebrated in those ways. 
 
In big, bright, shiny, magical, over-the-top ways.
Because that is how you are loved Mabel and that is what you do for us. 

This year will be no different. 
I will hang balloons, cut the cake and smile when I open your gifts for you.  I will watch you smile, and maybe even giggle at the noises around you and I will be grateful for this special day that God gave me you.
But I know that YOU know how much I love and celebrate you every day.  You have taught me how to wake with such gratitude to our Father with each sunrise because life is a precious gift and is meant to be lived as such.

This year has been remarkable with you, Mabes. 
You have maintained your smile, you aren't crying as often (thanks to a really great medicine) and we have enjoyed the days together with a vibrancy I can never fully comprehend. 
Only, they are wrapped in warmth, love and God. 
There's no way to explain that.
I wish I could explain why this day is so hard for me, baby.
I wish I could make people understand. 
But it isn't just your birthday or Christmas or Mother's Day that makes me so sad.  It's the very true, real and painful thought of not having you here with me eventually.  You are my everything and I love you so very fiercly.  I am so thankful that you do not understand the suffering your body endures every day, Mabel.  You do not understand that you'll be without me one day and so you cannot comprehend how awful the anticipation is.  I am grateful that you will know only the love of my arms before you rest in those of our Jesus!
 
Until then, I am trying desperately to not rush the pain. 
I want to love you so very big and so very much while you are here to love [and of course every day after.]
On this, the eve of your 4th birthday, we spent the afternoon with Aunt Jeni.  You rode in your stroller, legs crossed, bow in your hair and smiling.  You drank your bottle without choking, had 2 small seizures and a big one before bed.  But over all, you smiled a lot, I held you a lot, your brother sang to you and Nora read you a birthday card that you received in the mail. 
Today was a beautiful, good day, just like every day I share with you is. 

I wish I could better articulate the depth of my love for you. 
I also wish I could better articulate the depth of my sadness and heartache.
But I am beginning to think that, although not understood, many are able to comprehend that the two coincide with one another. 
Joy & Sadness.
Love & Pain.
Triumph & Tragedy.
Passion & Heartache.

One is no greater than the other and in fact, united, both have taught me more about myself than if I felt those same emotions separately.  You have taught me that in order to fully live, you must fully feel.  And because of you, Mabel Audrine, I do. 
I really do.
You are so deeply loved. 
You are so powerfully celebrated.
You are beautiful, wonderful, and pure.
 
Tomorrow, just like every day, I play to celebrate you for those special, unique gifts.
When I gently put you into bed tonight, I sang you the birthday song. 
I hugged you tightly and you laughed a sweet little laugh, nose wrinkled.
You are absolutely my life's reward, baby. 
I love you more every day. 
Here's to FOUR.  A beautiful year ahead...