Tears Fall...

   Today, and the last few days, have been very routine.  Not much out of the normal schedules of school, homework, church, and date night.  I started today like every day heading to car line then for an hour of cardio.  On the way to workout I passed a church and daycare that I pass often but this time was different with no apparent reason.  Joeli was in that daycare briefly before her first birthday and for whatever reason that familiar lump formed and the feeling of sheer panic overwhelmed me.  I didn't understand where it was coming from, I still don't.  All I know is at that moment the reality of my life and the condition of my heart hit me smack in the chest and once again I fell to the heartache.  There were no words but I'm certain He heard the cries of my heart right there in my truck.  I begged for Him to hold her tight for me.  I'm struggling to even put this into words today for some reason.  I made it through my cardio and felt myself begin to calm and find that place of production again.
     "The show must go on..." I forced myself to find a loud country song that I could sing to and not think about anything on the drive home.  It worked (smile).  I jammed all the way home and found that Chad hadn't left yet for his last hoorah of hunting.   Season ends tomorrow so he was preparing to leave for the night.  The "routine" of this stay at home mom kicked in like clock work.  Dishes done, floors swept, and crock pot filled I sat for a few to chat with Chad before he left.  I've started cleaning out the girls toys etc and yesterday had done their drawers of folded clothes....all 7!  They share a room, and love it that way.  They are also in what used to be Joeli's room.  Some may think that'd be hard but its always been comforting to me...she would've been thrilled to have a slumber party every night with her sisters!  Several of her things and memories remain in that room and Brelan and Mileigh love that connection.  They very much include her despite having no real memory of her.  Matter of fact, if asked, they'd say otherwise in regard to the memories. 
      Chad got on his way and I made my way to the girl's room to clean out their closet.  Two little girls in one closet?!  What was I thinking??? LOL...  Anyway, I began to take pieces of clothing that no longer fit or was worn too often and put them into a bag.  I sorted hangers, pants, and even shoes.  As the music played in the background and I sang along there really was nothing pressing going on in this head of mine...until there was.  In the back of the closet was the coat she'd worn that day.  The last day I ever heard her call me "mama".  I didn't forget it was there.  I just never took it out.  It was just me, the music, and Joeli's room.  The tears began to fall.  Six years later as I stood in what was once my sweet girl's closet, I lost it all over again.  I just want so bad to know her now, to kiss her forehead, and hear her elementary school drama.  Often, I just have to embrace these days and let the tears fall.  I call them "Joeli days" for lack of a better explanation.  It's not a bad thing....just a day.  There are days that I wake up and know it's one of those days and other days it takes me by surprise.  Today came when I least expected it.  Sometimes that's just how life is, I guess.
    Tears fall down, but they never find the ground.
    He holds my face in His hands, giving my tears a place to land.
    He hasn't forsaken me, it is He who has taken me.
    He takes me to a place of peace, a place where Grace flows with ease.
 Often, I struggle to find my place.  I wonder what sense this all makes.  It has just been one of those days.  I believe there's Grace in the midst of tragedy.  I know there is.  I'm living it.  I have to believe there's more to life than this.  There's a reason I'm "writing out loud"...there's a reason you're reading it.  I'm thankful to serve a God who understands my "Joeli days".  He knew I needed today.  I'm left drained and exhausted but often those are the times that He's heard the loudest.  Don't ever think your tears fall in vain...He's got them.  They don't go unseen.

No Pain, No Gain...

    How many times have you heard that before?  Maybe it should have read "no BONE pain, no NEUTROPHIL gain".  Maybe that isn't completely true 100% of the time either.  For us, bone pain is not a constant but is certainly an unwelcome guest!  Mileigh and I take a minimal dose of GCSF, also known as Neupogen, daily.  This method of dosing is effective for us on multi levels.  The frequency of bone pain is severely lessened and the window of opportunity for infection is narrower.  We still drop to an absolute neutrophil count or ANC of zero every two weeks but bounce back quickly for the majority of the time.  However, there are times that viral or bacterial infections find our bodies at its weakest. 
      I have experienced excruciating bone pain as a side effect of this drug.  That said, this drug has often saved our lives.  I've often been asked to describe this pain and the best I can do is that it's almost electrical.  It is deep within and wreaks havoc on the bones it invades.  Its source is from mass production of neutrophils in a space not equipped to handle that volume of cells at that speed of production.  The cells lump together in a race to the blood stream causing the long, marrow producing bones to pulse.  That, for us, is the pain.  The pain, while it's severe, also means that our bodies are doing their part by responding and bacteria fighting cells are on the way! 
     Relieving this pain is often by trial and error.  For some over the counter relievers work well and that's great.  For us, not so much.  We have prescription strength medication for those intense times.  That's typically a last resort.  Hot baths work extremely well as do heating pads.  Compression of the specific bones almost alleviates the pain entirely but is short lived.  I've asked Chad to physically sit on my hip with me lying on my side countless times to compress the hip and spine.  I've held Mileigh in my lap with the heel of my hand into her sternum many nights.  Speaking of nights...our experience with bone pain comes mostly at night.  In my opinion this is due to the body naturally swelling at night as the fluids settle. 
   I often wonder how life for us,as a family, would be different if Joeli had been given GCSF.  I don't mean that in an acute way but in a maintenance way.  I don't have those answers.  I may never have those answers.  That said, I know there are those out there who question this medication for many reasons.  I don't know if it's for every neutropenic.  I do know it's worth the research and worth the try.  I'll take my bone pain along with my neutrophils, thank you :).  I have to believe that it's all for a higher good.  Maybe my story can help you.  Maybe Joeli's voice is what you needed.  I long for the day that I see His face!  I long for the day that He puts my girl back in my arms completely whole! What a day it will be when I hear that precious voice again and spend eternity listening to her sweet self tell me of all of the ones she reached that I never got to know!  My friends, this world is NOT my home and this pain is temporary!  He is bigger than Neutropenia! I would love to hear from you!  Please feel free to comment.

Just Today

    Is today just that; today?  Maybe for some and some days maybe for me.  How often I find myself engulfed in the "plan"...be it tomorrow's or possibly next week's.  What about today?  Will today count?  Is it possible for today to count without a master plan?  You better believe it is!  We've been blessed, yes blessed, with the ability to speak, hear, and most of all LIVE!   What better ways to bring awareness to all forms of neutropenia and any "rare" illness than the way of today?! 
    The more the world sees our lives, the more our illnesses are brought away from the darkness of ignorance.  Daily conversations, why we do what we do, and just a general openness about the things that affect our every action will change perspectives and possibly create one that wasn't there to begin with.  There was certainly a time that my diagnosis of Cyclic Neutropenia wasn't my first choice for conversation starters.  Imagine that! LOL.... I didn't want to be looked at differently or weird.  Well why not?  We are all weird on some level, even if we think we aren't.   Depends on who is being asked I suppose.  Anyway, I count it a blessing to be "weird" in a way that can contribute so much insight into a medical condition that would otherwise remain undiagnosed.
    Often I find myself diving head first into otherwise difficult conversations with parents about the health of our children.  My favorite is when I get the horrifying looks in response to my Cyclic Neutropenia explanation in regard to Mileigh.  Today, due to her outward appearance,  it never crossed their minds that my girl might have to fight harder than theirs. Today maybe they considered "healthy" the norm and never gave it a second thought.  Maybe, just maybe, tomorrow they'll think differently thanks to my today. 
   My hope is to teach my girls to live each day deliberately.  You all know the cliche' "we aren't promised tomorrow"... but it's oh so true and I know all too well.  How often do we sit quietly in the midst of a situation when what we know and live would possibly make a difference?  At the end of the day it's about people and it's about today.  Personally, I'm thankful for our Neutropenia.  I'm thankful for our "rare" illness that's paved the way for Joeli's Song.  Would I trade all of this to have my Joeli back?  In a heartbeat!  That little girl was my everything, so today I hope she has smiled in regard to the difference her story is making.  I'm thankful to have formed life long friends who happen to be some of the most amazing folks I've ever met.  I'm thankful to have been given the opportunity to be "Mama" to a little girl who means so much to so many.  I'm honored to have been given today! 

Here's to Love!

    Today was a day filled with emotion.  A day to say "good bye for now" to a lady I'd grown to love.  For some her name was Jock, Mom, or Georgia Mae.  To us she was Memaw.  Her husband of 67 years, WHOA...yes I did just say 67 years, has lost much recently.  We have watched his health deteriorate, his physical abilities decline, and his memory begin to fade.  However, today I watched a husband of 67 years try so hard to say good bye and for all that has left him, love has not! 
     As I sang "Amazing Grace" during the service in honor of Memaw, I couldn't help but to be overwhelmed with the reality of His love for me.  A love that held me here when every breath caused pain.  I hurt for our family and I'm brought to tears as I think back to that man standing at her side trying so hard to understand.  I recall standing for Chad as we were forced to say good bye to Joeli.  I'm not sure how I stood at all let alone for him.  It was certainly a Heavenly hand that pushed us together.  When all else fails, love prevails! 
   How often I've found myself restless in a hospital room surrounded by cords, tubes, and random alarms...all while rocking a feverish child.  I was never once too tired to love.  I've fought our way for treatment and awareness.  Its never been an option not to continue.  Love was never questioned...it wasn't optional.  Love has remained an ever present source of fuel for this mama.
   I'm not sure of the road you walk, most days I'm not even sure of the road I walk.  That said I'm quite sure of love.  When we find ourselves tired and weary we must let love take over.  I'm not sure what exactly that means most of the time but the cool part about that is we aren't called to have all the answers!  We are simply called to love.  He will certainly meet us there!  I find some comfort tonight as I think of Joeli running to greet her Memaw at His feet.  What a beautiful sight!  Ill admit I'm jealous but oh sweet day!  So, here's to love! 

Six Years Ago Today

      Six years ago today I watched them carry her away.  A precious soul gone too soon, a part of me I'd never planned to lose.  One last kiss, softly on that sweet face, oh dear God give me grace.  There are no words when I allow myself to go back to this day.  Pale pink casket, gerber daisies, "my Father's house", and my sweet baby.  The building and hillside were full of friends and family.  All there to show support and love, I couldn't feel due to being so numb.  Trauma has an indescribable way of toying with our pain.  Numbness becomes searing, breath taking pain in a matter of seconds and can quickly bring you to your knees. 
    Our family has again lost a member so dear.  Chad's grandmother passed away at her home late Friday night.  As we prepare to celebrate her life I'm reminded of details required to plan a service.  I smile slightly when I picture her being greeted by my sweet girl wrapping her arms around her neck.  I try hard to remember the details of Joeli's service and the preparation there but I'm positive it was He and not I who guided those hands.  Jesus loves me this I know, for the Bible tells me so...amazing Grace how sweet the sound...it was Him who helped me lay her down. 
     All I know is here and now.  I know His promise and I know how.  One day I'll be there to hold her again but until then I'm called to live!  

How?

   How am I supposed to walk this road?  The same way you do...one step and one breath at a time.  I decided to wait till later in the day to write today on purpose.  Joeli took her last breath at 10:17 am six years ago today.  I found myself lost in music as I pounded away on the elliptical.  Five miles later I realized the pain in my feet and legs and decided that was enough for today.  I'd made it through our morning routine of lunches, brushing teeth, and car line for Brelan and Mileigh.  I felt compelled to hold on to them a little tighter, a little longer before they jumped out and ran into school.  You just never know.  I had to make a choice today.  How easy it would have been for me to return home and crawl back under the covers.  Instead I wondered what I could do in the day to day process of our life to honor Joeli.  So, I worked out, fixed my hair and face, met with a friend for lunch, ran a few errands, and checked Brelan and Mileigh out of school early.  Doesn't sound like anything out of the norm.  There's that "normal" again...someone please remind me what that definition is! 
   One question I am frequently asked is "as a believer, do you find comfort in knowing that Joeli is with Him"?  You'd think that would be a no brainer...WRONG!  As a believer, in my mind and in my heart, I do choose to take comfort in that.  I've said it before but it bears repeating.  My goal as a parent and as a child of God is to one day worship at His feet with my children...she's already there!  However, in my flesh, my answer is ARE YOU KIDDING ME RIGHT NOW?!  NO!  My arms physically ache for her, I miss my baby.  She was beautiful, happy, smart, sassy, and mine!  There was so much I wanted for her.  So much she'd yet to see and learn.  So many photographs I never got the opportunity to take.  I never would've imagined this day, this pain, this life.  This isn't what I planned.  Funny how we get so caught up in what we plan instead of what He's planned.  My sweet girl is making differences for her baby sister, her mama, and maybe even for you.  I could have never dreamed of the things she'd accomplish.  If I'm able to accomplish in my lifetime half of what she did in 3 short years, I'll consider myself blessed. 
   Truth is I miss my Joeli!  I miss who she was and who she never got to be.  January 18, 2007 Heaven got so much sweeter.  As a believer we are taught that this is not our home....it's certainly been solidified for me that I was not made for here.  So today my heart breaks again and I cry for the baby I no longer hold in my arms.  I cry for the child that I prayed so hard to have.  She was not made for here.  I miss everything about her.  I miss her voice, her laugh, her smile, her eyes, her wanting to be near me every second, her wrapping her sweet arms around me and saying "I love you, Mama, all heart".  I love you my Joeli Lynn, all heart! 
   God has certainly orchestrated divine appointments throughout this day.  A post on my facebook wall, a smile from someone who knows that I know, a hug when I least expected it, a text or a phone call.  He knew how badly I needed those sweet reminders of her.  Today in Mobile, AL it's been beautiful.  I remember that day...everything about it.  Today has been quite the opposite and for that I'm thankful.  She loved to be outside and often pointed out things that are often considered ordinary.  I tend to consciously look for the ordinary that maybe isn't thanks to her.  She was my heart and today I choose to honor her...not to run from what this world says is all there is.  I know better!  Until I hold her again, until I sing with her again, until this earthly life ends...I take one more breath...again.

Aching Night

        Six years ago tonight her head still rested on my chest.  I still counted each breath.  Little did I know what the next morning would bring...and take away.  My arms still physically ache for her.  The panic is physically overwhelming.  I remember how terrible she felt and how sweet she remained through that.  I remember being her hero and the only one she wanted. 
      At that point in my life I had no reason not to believe that mamas could fix anything.  I had so much I wanted to do with her...this was just a bump in the road and we'd surely make it through this one too.  I knew our lives would require an endless fight for proper care and protocol.  I never could have imagined the fight she'd be forced to surrender to for her own breath.  I wish it had been me. 
       As I sit covered in my own tears, my own pain, my heart aches to be with my sweet girl.  I didn't know this kind of hurt was even possible to experience and continue breathing through.  I told myself I wouldn't write today.  I don't know why I feel like someone needs this small window into my soul.  I do, however, know that His plan is perfect and somehow this will all one day make sense.  I cling to His promises because they are all I have.  He promises I'll hold her again.  Until then...Mama loves you Joeli Lynn!