Just a minute...

I just need a minute.
A minute to be well.
A minute away from this roller coaster from hell.

I just need a minute.
A minute to be free.
A minute where Neutropenia doesn't define me.

I just need a minute.
A minute to breathe.
A minute to live worry free.

I just need a minute.
A minute that's new.
A minute with you.

  Hey.  Funny how even in the Neutropenic life, it can still throw curve balls.  You'd think we'd be used to that right?...Nope.  I suppose we probably become more accustomed than the norm to the ever changing plans but often Neutropenia grows another head!  I am personally struggling lately and I just want to feel good without having to fight so hard.  There's so many "I's" in there right?!  I see Mileigh struggle to just feel good on some days and I want to teach her to push through because that's what this world requires but then I just want to wrap her up because I KNOW that feeling.  I want her to always have a place to land when she just can't go.  I want Brelan to have that too...for every other reason aside from Neutropenia.
  As ugly as Neutropenia is and can be, it is sure wrapped in some beautiful packages.  People often forget the struggle simply because it's wrapped in beautiful people.  Every now and then we just need a minute...

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!

"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.

Vanlentines For An Angel

     Hey y'all.  I'd say "Happy Valentine's Day" but that might be a bit cliche'...  These are the small holidays that are just fun when your kids are small.  Don't get me wrong, there isn't a crafty bone in my body, but I love how happy my girls get over the small things.  The small things have always mattered big to me.  It's always just been who I am.  I love homemade cards from my girls, pictures of our family thru their eyes, and anything that requires thought.
  It's been a rather emotional day for several reasons.  I'm thankful for friends who just know.  We don't go all out for this day but we do try to make it special for our girls.  Last night as I put out their hearts and candies in their respective places I couldn't help but think of three.  Oh if they only knew how much they mean to me.  I thought of Joeli and what her reactions would be as Brelan and Mileigh smiled back at me.  Then I thought of His great love for you and for me.  A love so big I can't describe and that's where my sweet girl resides.  I can't imagine what Heaven must look like on Valentine's Day.  I'm sure it's truly a sight to see.  I wondered what she'd be doing up there, looking down on me with that  Joeli stare.  I'm sure her face would shine so bright, she truly brings new perspective to this life.
  I wondered what I'd buy for her if I could.  What do you give to an angel on Valentine's Day?  I listened to Brelan and Mileigh give each other small tokens of love and wondered what it might sound like to hear them with her.  I wondered what she'd say to her little sisters and how she'd show them how much she cared.  I came back to "what do you give to an angel?"  I'll give her my voice, I'll give her my fight, I'll give her a legacy full of light.  I'll talk about her to her sisters and keep her memory alive.  I'll remind them how much she loves them and show them how to shine.
  Happy <3 Day Joeli, Brelan, and Mileigh!!!  Mama loves y'all All Heart!

Time...

   Hi there!  My posts seem to come fewer and fewer lately.  It's certainly not on purpose.  Time seems to get away from me some days especially lately.  The anxiety that comes with holidays and missing loved ones tends to take over here and there.  January 18th was 7 years that Joeli has been with my Jesus.  At times it seems like just yesterday I was scooping my little girl up and wrapping my arms around her and other times it seems like 100 years since I heard her sweet voice and smelled her hair.  It's difficult to explain how in the same breath it feels like yesterday and then so long ago too. 
   Last year at this time I was launching this blog for the first time.  I have been amazed at the response.  It's because of you that people hear Joeli sing.  It's because of you that I find encouragement.  I know how hard it is to be on your side and how often you fear saying the wrong thing.  I have found strength here.  Your comments, your stories, even your struggles that you share with me have brought me to this place in time.  Thank you. 
      So often we hear that time heals all wounds.  I'll say that's a bold faced lie.  I've lost  many that have been close to me including a parent.  Time often dulls the ache and creates a new normal but it doesn't "heal".   7 years later and the death of Joeli, my first born, is just as searing today as it was on Jan. 18, 2007.  I can't replace those memories or that hurt.  Time has given way to awareness.  It has provided situations and circumstances for me to share her and to help others.  It has given me perspectives I never wanted to know.  It has also stolen from me that which I'll never get back.  Oh, how I miss my baby.  I know she wouldn't be a baby anymore...she'd be my 10 year old 5th grader but time took that from me.
  Time, along with the cruelty of this world, have taken much.  However, there are things it can never take.  It will never take away my security in scooping her up at His Feet on that glorious day that I walk thru His gates.  It will never take the closeness that I have with her to this very day.  It will not touch the bond she has with her baby sisters and it will not take her song.  She won't be silenced for as long as there is breath in me. 
  Late last week my family battled illness and while resting MiBeth came to me.  She came with a familiar randomness, that defines her, and said "Mama, I wish Joeli could walk me to class".  I questioned my own ears and said "what, baby?".  She knew exactly what she'd said and repeated to me "Mama, I wish Joeli could walk me to class but she can't.".  With big alligator tears she waited for my response.  How do you respond to that?!  I swallowed, hard, and said "My sweet girl, your friends might not see your big sister with you but I promise you she is with you always.  She walks with you every day just like Jesus does and don't ever believe any different".  She, being 5, was satisfied with my answer and simply said "ok, Mama".  There are times that I wish I was satisfied with His answers for me.  He tells me and I know that He knows better than me.  He tells me that His timing is perfect.  He tells me that all things work together to glorify Him.  I know all of these things and I do believe them.  Often,  it's hard to find comfort in these things when He's the One who holds my little girl.  I have to remember that in His time I will be healed...so maybe time does heal.  Just not in the way we define.  I believe this is true.  It leaves me clinging to a verse that I learned a long time ago but have recently found new meaning in. 
     "Now faith is being sure of what we hope for and certain of what we do not see."
                                                                   -Hebrews 11:1
Be Blessed!

From Despair, Hope is Born!

  It's been a while huh?....  Yeah, well better late than never I suppose.  Often, during Thanksgiving but especially during Christmas, it's hard to breathe let alone speak.  For one that finds comfort is talking, writing, singing, etc. it's just a time when there are no words.  I don't have a reason or explanation as to why some years are harder than others but they just are.  This year being one of them.  I know there are many opinions on medication vs. not.  Personally I despise medication so I try to stay away from what isn't absolutely necessary.  Being neutropenic has proven a life of "necessary" medication so I steer clear of the ones I can get by without.  Different strokes for different folks.  As much as I don't like to take nor admit to needing meds, sometimes it just is what it is.  I don't like the way they make me feel.  I don't like feeling like I'm in a cloud or sleepy.  To be honest, the pain is often a familiar reminder that this is real. This Christmas was one of them.  In life and in grief you just do what you have to do to make it and to be the best you can be.  Sometimes my personal best isn't so attractive to even those who know and love me but that's ok. 
  This Christmas season my family took a vacation to Tennessee for a week.  It's a place we love and visit often.  It's one of those places that feels like home to me.  A place where breathing becomes somewhat easier as soon as I cross the county line.  This visit, Chad was unable to go with the girls and I due to work.  My mom and grandmother and my two aunts went and they had a cabin and we had a cabin.  On one of the last days there I took the girls into downtown, which was appropriately decorated for Christmas, and snapped photos and sipped on cider.  Once back from the day, in our cabin, with the fireplace going and the girls quietly playing I began to edit these images from downtown.  For some of you, you've become more than followers...you're friends.  We are connected by more than my posts and you see my daily life thru the eyes of facebook and other social media/networking.  This image you have not seen...I didn't post it.  I edited the image and studied it for a while. 
  I began to think about all the things this image represented and I became overwhelmed with a sense of thankfulness.  I know and agree that my family has been broken beyond repair especially by this world's standards.  I know it isn't the way I wanted and it's a source of excruciating pain but even so my family and my heart is NOT too broken for Him.  Ok...so here's the image.

  It might not look like much to most but to me it screams love, it screams hope and promise, and a future without brokenness.  I began to think about how desperate Mary and Joseph must have felt when they were traveling and turned away the night my Jesus was born.  I couldn't imagine the depths of that despair.  Being in physical pain, with nowhere to go, and a baby who had plans of his own when it came to arrival.  The blow to Joseph's ego when he couldn't provide what his wife and unborn son needed.  I compared it to myself.  How I couldn't provide what Joeli needed when she was so sick.  How I can't take away neutropenia from Mileigh.  BUT GOD! 
  He knows so much more and is so much better at it than me.  He made a way for His son and He has made a way for my Joeli and is most likely making a way for you and/or someone you love.  The Savior for this ugly, dying world was born in the midst of despair but yet still brought hope.  My little girl was ripped from my arms way before her time but somehow is still speaking for me, for Mileigh, and maybe for some of you.  I don't know how I'll get through this life without that piece of my heart...good thing I serve a Lord who doesn't require that I know.  He just waits for me.  Picks me back up off my face when I cry out and forgives me when I turn that anger and hurt on Him.
  I have no doubt that hope is here.  Sometimes its just not in the way we want or expect.  I don't have to agree to appreciate.  For now and for as long as the heart in my chest continues to beat I'll miss her, I'll miss what should have been, I'll hurt for her and for my family that isn't whole but I know that I know that I KNOW that one day I WILL hold her again and it's solely because of the hope I have in Him.  Don't lose hope, hope didn't lose you.

 

O Great God

  It's that time of year again...Thanksgiving has come and gone and so have the fleeting moments of family gathered around a table sharing what they're thankful for.  So many say "my family", "my job", "time"...These are all true and very much legitimate.  I know that I have much to be thankful for but in the midst of those times when I see parents with their children and families fixing their children's plates I am compelled to revisit the anger that once consumed me.  I WANTED HER!  I WAS THANKFUL FOR HER! 
  I find myself whispering that all too familiar prayer once more..."are you really there?".  Often the words leave me and all I can do is weep and cry out "oh Great God, my baby, my baby".  I know He hears that too.  I know He's there.  Sometimes I just need to feel Him and be reminded again.  I forget so easily how far He's carried me.  I shouldn't. 
  Please know that in those quiet nights while the world sleeps and your world is wrecked and in the throws of full blown Neutropenic wars...He's small enough to know.  He hasn't forgotten even when it feels like He has. 
  I find myself singing thru the tears and praying that He's small enough to truly hear.  He is and He does and He understands even the craziest of prayers that would send others in frantic search of a straight jacket and rubber walls! LOL. 
  I am thankful that I am Joeli, Brelan, and MiBeth's mama =) 
Be Blessed!