Bittersweet Meet...

   Well hi there =).  For many of you who follow Joeli's Song, you also parent a neutrohero.  I see your lives via social networking and have often wondered if I'd ever find myself face to face with any of you.  Last weekend I did.  For those of you who aren't a part of the neutro family but follow and support and possibly love someone who is, I'm referring to the National Neutropenia Network's family conference held in Ann Arbor, Michigan this year.  I've attended several of these conference but this year was very different.  This year Brelan and Mileigh were old enough to attend the kids camp so they made the trip with me.  We car pooled with a sweet neutro friend of mine and her son and the trip has been amazing.  Also, this conference was a first since Joeli's Song was launched in the blogging world.  Often, in the midst of conferences, I've found myself quiet and alone.  This conference was far from quiet and alone.  So many of you found your way to me, hugged me, talked to me, cried with me, oohed and ahhed over my girls, and remembered the angel who made me the mama I am.  Thank you!  

   There were so many new faces this year...so much so that it was record numbers for the National Neutropenia Network.  Your hard work in raising awareness is paying off!!!  You're being heard and what a difference it has and will continue to make!  Sing Loud!!  There was talk of the device for at home cbc testing and a future oral medication in place of injections.  How I long for the day that our babies no longer require sticks daily.  

  Brelan, my non neutro, was very apprehensive about attending because of a couple of reasons...1. she isn't "sick" and 2. she'd never been.  I reassured her there were other siblings attending who weren't sick either but who loved their brother or sister who was.  She quickly connected with a friend in kids camp and ironically enough this friend is exactly the age of Brelan's big sister Joeli (10).  If that ain't a God thing, I don't know what is.  It brought tears to my eyes to see the two of them chat and play.  It brought a happiness to my heart that has been gone for so long.  It will never be the same but I know that my Joeli was all over that place and made divine appointments to comfort her baby sisters.  

  To you mamas, and you know who you are, thank you for loving me and my girls.  Thank you for stepping out of your comfort zones to talk to us and love on us.  It truly meant the world and made more of a difference than you'll ever know.  

  Since the conference ended on Sunday, we've stayed in town to visit with more of our neutro family and what a blessing it has been.  Our stay ends tomorrow and we will head back into our world where neutropenia isn't common place any longer.  The week has been full of coffee, hugs, talks that last into the morning hours, plenty of syringes and neupogen ;), and memories that I'll hold close to my heart forever.  I've watched our children play and love like all is well...I suppose for them it is.  I pray and search and raise awareness in hopes of a cure for our children.  I pray that I live to see the day that our neutroheros are no longer neutro.  I've had more profound moments in these last 7 days than I can count.  Joeli has made her presence known all around.  It's surreal when I think about it.  It sends me reeling back to the name that many of you have so lovingly given her "the guardian angel of neutro kids".  She was certainly with our kids during this time and she has sure been with her mama.  I am so honored to be called "Mama" by Joeli, Brelan, and Mileigh.  I am so honored to call so many of you "friend" and I'll be forever grateful for those of you who keep your hands at my back pushing me forward as I make Joeli's Song heard.

  Don't give up...keep fighting and keep singing.  Keep in touch, open up, you never know who you might be holding up!  Be Blessed!

What's Your Limit?

   Hi!  Long time, no read huh?!  It's definitely been one jam packed summer thus far.  As soon as the girls completed K5 and 2nd grade this year we left for Tennessee aka "the place where I breathe easier"...smile.  Since then we've been preparing for the longest road trip we've ever taken.  Can you guess?  Ann Arbor, MI for the NNN Conference...DUN DUN DUN =). 
  Our lives have been pushed to the limit in many ways recently...girls are growing way too fast, hemoc appointments, hard conversations, scheduling bone marrow biopsies, and just trying to keep our heads above water.  Seems like we are right there with the rest of the world.  Hence the title of this post...what's your limit?  At what point do you break?  Typing the question makes me slightly uncomfortable so I'll assume reading it and allowing yourself to seriously consider it's truth does the same. 
  To be quite frank with you, I've had enough.  Period.  End of story.  As selfish as it may sound I am finding myself begging for a divine answer from the One who died for me.  I find myself demanding, not asking, but demanding for a time when life won't be so dang hard.  I find myself begging for a place in this world where marrow doesn't fail, where family understands, where friends are real, and where we are all healed.  I wonder who sets the standards for health insurance companies and what jack-o is able to sleep at night knowing full well they just denied life saving treatment and/or preventative treatment to ANOTHER neutropenic.
  I wonder when my little girl will be considered a priority instead of a congenital marrow failure that's worth setting on the back burner solely because hers happens to be predictable.  In what universe does that even make sense?!  She hits ZERO every 14 days...I hit ZERO every 14 days...her big sister DIED at ZERO...  Where is the limit here?  I've reached mine...have you?  Honestly, I reached mine a long time ago and I've been holding on here since then.  What happens when I can't hold here any longer?  What happens when neutropenia is no longer "treatable"?  I just want a cure for my girl, for yours, and for you. 
    I have found encouragement in many of you and for that I'll be forever grateful.  You have no idea how big of a role you've played in holding me in place during a time when I couldn't hold myself.  I know this post hasn't been exactly uplifting...sorry.  Ok, no I'm not.  It is what it is...right?! Right.  It's just where I'm at.  I'm at my limit.  Again, I'll ask, where is yours? 
  I am looking forward to a road trip with my friends and sweet girls.  I am looking forward to meeting so many of you there.  I can't wait to put faces with so many names and say thank you.  Please pray for us tonight.  Tomorrow.  Anytime.  I pray for you when I can't find the words to pray for myself. 
  Sing Loud...I sing when I cannot speak...I sing when I cannot pray...I sing.
Be Blessed!
 

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!