Monday, March 17, 2014

Panic Stricken Randomness

I needed a place to go today
It's not supposed to be this way.

I want to hold you tight right now
and trace the beauty of your brow.

I tell them how you fought so brave
You're fighting now, even from the grave.

Brelan and Mileigh miss you so
God, why did she have to go?

I want to feel your sweet face again
I want to touch and breathe you in.

I don't know how to do this here
Here in this place of lies and fear.

You brought light in a darkened place
I miss that sweet smile on your face.

They tell me of their thoughts of you
The dreams they dream are never new.

They meet you when the world is at rest
It's then that they play the best.

I find a smile now and then
when I think of you with them.

Watch over your baby sisters please
Watch over them and watch over me.

Tell Jesus to scoop you up real tight
that's your mama hugging you tonight.

These tears that fall are not in vain
You, Joeli Lynn, are bringing change!

I love you sweet girl, All Heart
One day I'll be there and we will never part.

Until the day we meet again
Remind us every now and then.

I'll fight for you till my last breath
You're saving many from senseless death.

When night is still and silence so loud
I think of you and I am so, so proud.

So, these tears that burn my face tonight
Are adding fuel for your fight.

Goodnight sweet girl, I love you All Heart

Around the world
In the house
On the street
I even love
"your stinky feet"  ;)


~I got in bed tonight with a heavy heart.  I just miss my girl, that's all.  Panic set in and instead of succumbing to it's grips I decided to get up and jot down some things.  This came out.  With life being so busy with Brelan and Mileigh lately, I often find myself wondering what it would be like with Joeli too.  I wish I knew.  They talk about her a lot.  I like that.  I know that they'd be close.  Makes me proud to hear them include her in their little lives.  They don't have any memory of her alive but you'd never know that to hear them speak of her.  I want the world to hear Joeli's song.  I want them to know that it didn't have to be this way.  I want parents to have appropriate information about their children who suffer from Neutropenia in any form and I want children to be treated with appropriate medical care regarding Neutropenia.  Appropriate is the key word here...it doesn't have to be the "norm" to be appropriate.  People need to know that.  This post may be random at best...it is what it is.  I often find myself at a loss.  Your comments and encouragements carry me some days.  I know there's fear in that.  I know Joeli's story is someone else's worst nightmare.  I know nightmares cause us to run in the opposite direction.  Please know that she needs you.  I need you.  Other parents need you.  Don't lose out on being a blessing just because you think someone else has it covered.  Be Blessed!



Thursday, March 6, 2014

"Neutropenia Makes Me Sick!"

   Pun intended!  My MiBeth feels like pure T trash right now and truth has never been more true than when these words define you.  She has been fighting a cold for a few days now but it all went down hill Tuesday night.  She has been miserable ever since.  Low grade fever, sore throat, cough, and oh yeah...NEUTROPENIA!  School was out Monday, Tuesday, and Wednesday of this week for Mardi Gras but Mileigh was home today too for Neutropenia.  She will likely be home tomorrow too.  I held her for much of today and we spent that time in pjs with Disney Jr.  I swapped the laundry occasionally and fixed lunch etc but then was back on the couch with her.  Her mouth is scattered with ulcers including her tonsils and she feels horrific.  My heart breaks when Neutropenia rears its ugly head in such a way.
   Neutropenia has so many titles that define it but this week, today, right now....Neutropenia is a THIEF!  It steals much more than neutrophils.  It steals life.  It takes away energy and often smiles.  It steals play dates and school days.  It takes away our happy.  It leaves us defeated and lifeless and that is a place I refuse to stay.
   My friends often comment on my "strength".  Today...I AM DONE.  I AM OVER NEUTROPENIA.  I am done with living life in a constant state of picking up the broken wreckage it leaves behind.  I am NOT strong and I am NOT brave.  I am weak and I am broken and I am tired.  I was left standing in the ER ambulance entrance with empty arms and the air ripped from my lungs thanks to Neutropenia.  I've had countless conversations with my toddlers with every effort to explain death and why their big sister isn't here with them.  I've tried over and over to answer questions that should never enter their precious minds.  I've spent the last two days holding my neutropenic little girl and praying over her.  I've cried when she finally slept and begged God to heal her beautiful little body because this is something that Mama can't fix.  I have poured out my soul right here and in any way that folks would listen so that this wreckage that is me isn't what others become.  I have fought for children I do not know...maybe yours.  Right now, right here, with sick neutropenic eyes fighting to stay awake beside me, I am undone.  I don't understand why so many choose to look the other way.  Can they not hear?!  Do they not care about the child that may come to this diagnosis in days, weeks, months, and/or years to come?!  Do they not care about mine? 
  Times like right now I know that I am weak.  It is what it is.  Neutropenia makes me sick!  I do, however, hold on to a promise that I don't deserve.  He is never defeated.  He is never done with me.  To be honest, those words are hard to type right now...I'm just broken and I just want my Mileigh to feel better.  As simple as it sounds, it just isn't.  I know that when I cannot speak He catches my tears and hears my cries.  He knows.  I believe there's a cure for us.  Please pray for Mileigh.  Pray for healing.  Pray for pain relief.  Pray for neutrophils.  Pray for rest.  Just pray because He hears.  Peace out.