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!

One Step at a Time

       We walk.  Even from infancy we are prepared to physically walk.  I remember, with each of my girls, being filled with complete joy as I watched their tiny arms and legs kick and squirm.  That feeling, knowing that precious life came from me.  Seeing them grow.  Watching them move, scoot, crawl, and finally take that first step that quickly turned into a full blown sprint!  I smile knowing those memories are forever embedded in my mind and soul.  They are mine.  I can only imagine the smile on my Father's face when we finally take that first step towards Him.  What a sight to see as a parent!  We rejoice over one step!  He does too.  I'm finding this week hard to document...  I struggle to find the hope that I know is promised.  I have no doubt that it remains.  I take one step then another, one breath then another, one day to the next.  The process of life is full of steps, it's up to us to choose to take them or remain stuck.  I must choose to recall the honor I feel when I remember that He chose me to be her mama.  He chose me to hold her for three years and five months.
       I struggle when I think of what she would be like now...almost six years later.  She was the shorter of my three girls so I wonder where her cheek would fall if she were able to wrap her arms around me as her sisters do.  I'd give so much for that question to be answered.  However, I have no doubt in my heart and mind that her Heavenly Father knows exactly where her cheek falls!!!  I have no question that her voice is music to any ear that's blessed to hear it.  I'm reminded of a song when I think of her sitting with Jesus.  Here's the link. http://www.youtube.com/watch?v=pBg9btpGqKU .  I'm jealous of the angels!!  As I've struggled to compose this post I now find myself able to smile again.  Smile as I remember my little girl.  Smile as I try to bring honor to her life.  So, I take another step.
    Your steps may or may not be like mine.  You may need to take a step through a diagnosis or through a treatment or just through or into another day.  Your or your child's diagnosis may in fact be "rare" by today's terms but you are not alone.  When no one sees, He does.  When no one hears, He does.  Just put one foot in front of the other and eventually you'll be in a different place.  My language is music...it truly speaks to and carries me.  That said I often am reminded of promises that are written...those I can physically put my hands on.  Jeremiah 29:11-14 are a few verses that I've held tightly to even when prayer was only a thought.  That was a "one step at a time" process too!

     Here are those verses: ¹¹ For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. ¹² Then you will call on me and come and pray to me, and I will listen to you. ¹³ You will seek me and find me when you seek me with all your heart. ¹⁴ I will be found by you,” declares the Lord, “and will bring you back from captivity.^[a] I will gather you from all the nations and places where I have banished you,” declares the Lord, “and will bring you back to the place from which I carried you into exile.”

   One step at a time..."exile" is not a permanent place and for me that's one promise I cling to! 
    

A Waiting Game

Life that is...is a waiting game. We wait to grow up, we wait with high anticipation for the child we've prayed to have, we wait to hear their precious voices speak the word "mama" for the first time.  I wait to scoop my Joeli up again and kiss her sweet face and am quickly reminded that I am not made for here.  So, I wait.  I wait in a world that is not my home.  I wait with her Daddy, who she adored.  I wait with her baby sisters whom she never got the chance to truly know.  I'm often reminded that He too waited.  He waited so that we might come.  He waited so to show us how.  I am in no way one to "fit the mold" when it comes to my faith.  I am, however, one who royally screws up on a pretty regular occasion, one who runs fast from the One who gave it all for me, and thankfully one who He sees as the apple of His eye.  I don't know what your "wait" is...waiting for a confirmed diagnosis, a phone call, an approval, a treatment, a hope...  I don't have the answers for my own waiting.  I wish I did.  I wish I had them across the board.  I wish you did! 
     I find myself waiting for the dreaded "day"...the day that marks the last day I ever got to feel the warmth of her touch.  The last day I ever saw her and Brelan together.  The anticipation is excruciating.  It'd be easy to go to sleep and wake up on the other side of that day.  I'm not fully aware of my purpose here but I'm quite aware of hers.  She made me the fighter that I am!  She is fighting for me, for Mileigh, and quite possibly for your baby too!  Often, waiting is part of the fight.  Don't discredit that.  While we wait we are confronted with those who desperately need to connect with us.  Those who desperately need the hope that we hold on to so tightly.  So, for now, I wait to hold her once more.  Another minute, another day, another month, and soon another year I wait.  I refuse to miss the precious smiles of Brelan and Mileigh.  I'm determined to live in a way that clearly displays to my girls how to make it in a world that is not our home.  I try to make the best of my "waiting time".  Do you?  Until we meet again, Joeli Lynn, we wait.

Fear

                 I suppose the title is pretty broad to say the least.  "Fear" could definitely be used widespread in relation to a rare illness.  I think fear becomes a permanent fixture within the walls of our "normal" daily lives with Neutropenia.  Today, Jan. 14th, was a pivotal day for us six years ago concerning Joeli.  Six years ago this evening Joeli spiked a temperature and our "protocol" began, or so I thought.  Being sent home with a severely neutropenic child with a history of fever scared me to death.  There's fear again.  I'd made the calls, packed the bag, waited in the waiting room...only to be sent home.  What sense did this make?!  Who does this?!  I don't profess to be a physician or know what they know.  I respect their education and I respect their drive to care for people.  That said, I know my baby!  I knew she was sick.  I knew she couldn't wait till the following morning to be seen otherwise we wouldn't have risked waiting in that emergency room.       
                                                                                                   
       At that point all I knew to do was take my sweet girl home in those early morning hours and hold her till I could reach someone else within normal business hours the following morning.  She slept off and on in my arms and I watched, prayed, sang, and trusted that surely they'd reconsider in the morning.  NO appointments available.  REALLY?!  I was encouraged by the lack of fever so agreed to an appointment for the following day.  I'm struggling for words right now.  The searing and heavy pain in my chest is almost unbearable.  I have to allow myself this week, these tears, this pain.  How I wish I was holding my sweet girl again.  You can't live through a situation like this and not consider the "what ifs"...what if I'd fought harder, could I have fought harder, spoke louder, etc...  Would God's plan for my girl have changed?  I can barely see my screen through the tears.  If you don't ever read my blog again, please know this:  You and your gut instincts MATTER!  They're REAL!  They are God given and don't EVER back down when you know you're right about your baby.  I wish my Joeli had been given that kind of time.  The time necessary for the fight.  I can clearly see His hand in my life, all circumstances included.  I can hear my sweet girl's voice, see the differences her life is making, and smile through streams of tears because I am so proud to be her mama!  Your children are a gift, treat them accordingly....don't ever be afraid to fight.  The fear that we are forced to coexist with doesn't have to rule.  Take it for what it is and redirect it.  Don't back down. 

What's your copay?

Co-pay and Doctor?  Don't you love that question?!  You might be lucky enough to get a hello or maybe you're one of the lucky ones who have a team of physicians who are just as interested as you are in your or your child's diagnosis.  If you are blessed with that team, make sure they know it!  This is not partial to Cyclic Neutropenia by any means.  How often is there a diagnosis that you hear for the first time?  There's an overwhelming amount of illness especially those who directly affect children.  Often I've been greeted with "doctor and co-pay?"...  How about asking for my name or better yet greeting me using my name because you already know it?!  There's a thought!  What happened in our health care to make people so cold?  For me, my heart breaks for the complete stranger I happen to be behind in a local grocery store who's having to select what item of necessity to put back.  My heart is torn apart when I'm singing Mileigh to sleep in the midst of an admission for neutropenic fever and I stop to listen to cries of the sick baby next door.  Where has the passion gone?  Is it gone?  Was it ever there?  Surely at one time people weren't wrapped up in the electronic charting, insurance filings, and co-payments.  For the sake of humanity I have to believe that there was a pivotal point in every health care professional's life that drove them to care for people.  I believe there's a compassion there that somehow gets covered with all the logistics.  I know in my heart that we, as people, were put here to love on people...not to count co-pays.  Now don't get me wrong; charting, co payments, logistics are all very important but I feel their place on the list of priorities has gotten off base.  I have often wondered in the past what was more important, my co-pay or my mama's intuition.  At times I've found myself almost saying out loud "hey, did you just hear me?".  It's up to us to be heard, to keep pushing, to fight for our children and ourselves for that matter.  I wish my pushing would have benefited my Joeli.  She didn't have that kind of time.  The time it takes for pushing and phone calls and "logistics". 
   My goal in raising awareness for Cyclic Neutropenia, Idiopathic Neutropenia, Congenital Neutropenia, and Autoimmune Neutropenia is not just for Neutropenia.  It's for every parent, every child, every person who's been handed a diagnosis that is virtually unheard of to be heard.  The goal is to one day not have to jump through flaming hoops to be taken seriously.  Maybe if people care about people, and start speaking up about some of these illnesses they won't be so unheard of.  I believe medical practices need that much more than the co payment information that they have direct access to before asking you.  I do know that there are practices and physicians that truly go above and beyond to care for their patients.  Those are the ones that give me hope.  Those are the ones that will one day assist in the change of perspectives.  To those, I say thank you!  From the bottom of my heart, thank you!  You are more than a co-pay...don't forget that!  Make yourself heard in a way that is respectable and educated.  The world is now at our fingertips. 

A day in the life....the Neutropenic life!

  So...after living with my own Cyclic Neutropenia for 30 years and caring for my neutropenic children, I've often wondered how our lives may differ from yours. Do they differ?  Initially my answer would have been "no, not really".  However once I gave the thought a little more attention my response became more like "hey, ya know....how would I even know"??  This constant state of caution and preventative care has been all I've ever known.  Most folks don't give much thought to live bacteria from our own skin being transferred to a pair of jeans. How often do people truthfully clorox wipe their t.v. remote???  Any given day with Brelan and Mileigh and you're likely to hear "hands away from your mouth", "remember we get germs and give germs that way", "Mama, can we clean something too?".  Brelan, who thankfully is not neutropenic, is very much aware of neutropenic precautions. Well, as much as her precious 6 year old mind can comprehend.  She is in a steady mode of making sure that Mileigh, her baby (neutropenic) sister isn't in harm's way by any definition.  She recalls scary admissions from years past. 
So...we wear pants once between washes and everyone uses a fresh towel for each shower (that makes for lots of laundry).  I don't mind the laundry all that much.  Its a small price to pay to prevent skin infections.  We swipe as we go and hope by the end of the day something is completely clean (smile).  Life is crazy busy and we love every minute of it.  Our home is clearly very lived in and in no way "spotless" by my definition.  It is a constant effort.  Mileigh who is 4, 5 in March, is very much aware of her neutropenia and the structure her life requires.  She will be the first to speak up about hand washing or hand sanitizer, she never fails to remind me if I'm late on her GCSF injection, she doesn't forget a thing!  Do any little girls?! HA!  Out of all three of my girls, Joeli and Mileigh have been the sassy ones.  Mileigh might have Joeli beat by a hair (smile)!  Brelan is my tender-hearted, snugly one who absolutely adores her Mama.  I'll certainly take that any day.  I suppose to sum it all up, if you get into the every day, there's lots about our lives that may not be "different" by this world's standards but their affects on our lives are insanely different.  Most of these things become natural for neutropenic families but I for one will testify to the occasional weariness of it all.  Being a parent is a 24/7 job in general complete with the often bouts of exhaustion for the typical mama.  The diagnosis of "Neutropenia" in any form hurls us into a completely different category far from "typical".  As they say, "the show must go on"!  Our days don't allow for slack.  Slack equals "RISK" in a neutropenic world.  For now, my girls are small and teachable.  It's my job to show them how to take care of the bodies that God blessed them with.  Once they're grown and on their own, and hopefully still doing every single thing their mama said, haha...this mama will rest.  I know the daily grind of neutropenia gets me down at times and it's all I know.  That said I'm quite sure it's the same for some of you and potentially more so due to the rareness and newness of it all.  Be encouraged!  Often being "down" and realizing just how much strength it takes to do what you do day in and day out will be the fuel you need on another day.  Stay strong!!  Happy Friday ;)

A Beautiful Mess!

I am in complete awe!!!  Yesterday Joeli's Song was posted for the public...yesterday over 1700 views were made!  That means "Neutropenia" was more than just a word yesterday.  I cannot begin to describe how that makes this Mama feel.  My heart swells with joy when I think of my angels face and her sweet voice.  She would be so happy that so many children are getting the information they so desperately need and deserve.  I am amazed at the greatness of my God.  It's been nearly 6 years since Joeli left my arms and at that time I'm not sure I'd have believed anyone who told me that God would make this work.  He took this mess, that is me, and made something beautiful!  He made her beautiful!  As often as I fail miserably I'm more inclined to think that He can't do anything with me.  For so long I've thought to myself geez Lord, you got the wrong one here.  I can't do this.  I can't be that person.  I mess up far too much.  BUT GOD! He is so much bigger than my mess!  I am honored to be His.  I am honored to have the support of those of you who played a huge part is sharing this blog.  Thank you.  Please continue.  Joeli would be so proud. 
  You know, as parents, we think we speak for our children.  We never imagine our children speaking for us let alone children around the world.  Joeli speaks for me, for Brelan and Mileigh, for you, for your babies.  I am moved to tears when I think of what could be.  What could be if Neutropenia was given the respect it's due?  The research efforts, resources, potential cures!  It's been 30 years of my own personal daily battle, fighting for Joeli, saying goodbye too soon, fighting for Brelan to understand, and Mileigh's medical care.  Neutropenia, in all forms, deserves exposure.  I can't imagine life without this current struggle but I'd love to have the opportunity to have to figure that one out!  Many of you probably think this particular post is a "mess" haha...that's OK.  For those of you who don't know me personally just imagine the high pitched squeal of excitement combined with a few tears and talking with my hands.  It kind of makes me laugh to think of what possible visions and opinions are of me right now but I am just flabbergasted and overjoyed with the response!!!  Keep sharing, keep fighting!  It may look and feel like a huge mess when you're sitting in the middle of it but He can make all things new!  Thank you so much again and Be Blessed!

Attitude Check

     Attitude... it can make all the difference.  When speaking of Neutropenia and trying to inform those assisting with our care or the care of our children bad attitudes simply cause a traffic jam where education is at the bottom of the "to do" list.  Personally, I am more likely to listen to someone if they speak to me in a way that doesn't cause me to feel like a complete idiot.  I believe that's a two way street.  How can I complain about some one's lack of knowledge if I fail to educate them in a way that they can learn?   Neutropenia is frustrating to put it nicely!  If it's frustrating for me as a patient/parent of a patient then I can only imagine the frustration level of the one left to care for us who has never been informed.  It's easy, as a parent, to let emotions run high.  It's easy to just get pissed and expect medical professionals to know it all.  Fact is, they're people too.  What we have and live with daily may be our "normal" but it certainly isn't theirs.  I'm about to tell my age here (smile)...  I was born with Cyclic Neutropenia 30 years ago.  YIKES!!!!  I turned 30 in December, like last month December, so I haven't seen it on wide screen till now HA!  I say all that to say it's taken me a long time as a patient and eventually as a parent living with Neutropenia and all it's shenanigans to find a way to speak to health care professionals that doesn't automatically yield defensiveness.   If we are to make meaningful strides in Neutropenia research and health care world wide for neutropenics then it is imperative that we learn to speak with the respect that we so freely demand.
    I am in no way saying that some situations don't demand a fight.  I've had my fair share of fighting for appropriate medical care.  I just believe that it shouldn't be our first teaching tool.  When it comes to my own hospital admissions I typically end up educating every health care professional that comes into my room on some level.  Obviously, Neutropenia is related more so to cancer in our medical community, so when we require admissions we are mixed into the cancer population.  I cannot tell you how often I've said "but I don't have cancer" in response to a physician or nurse asking what my cancer diagnosis is.  Pure CRAZY if you ask me but again.... they didn't know!  If I want them to listen and if I want them to know and to be interested in more then I have to take a step back.  Easier said than done, I know, especially in the midst of an episode.  It's not impossible.  We live with neutropenic conditions that are "hard"...so add education while admitted to the list.  At the end of the day it's us who benefit anyway.  We will always require medical treatment.  If we establish a relationship that respects them then they'll respect us and as the knowledge grows the fights will lessen.  All of this said I do understand there are some situations that just call for a mama bear.  Never be afraid to fight for your baby!  You know your child best and are your child's best advocate hands down.  This is definitely one of those posts where I've got three fingers pointing back at me...it's tough for sure.  You can make a difference.  Speak up and most importantly teach your child because one day they'll be required to fight for their own medical care.  Teach them to speak and educate in a way that demands respect.  You got this!  As Joeli would say "Peace out, see ya on the flip side"! 

Who is your support?

    Once receiving a diagnosis of any type of Neutropenia, a severe feeling of isolation sets in.  The statistics are overwhelming.  Likely, you and/or your child/children are the only patients within your hematologist's practice with Neutropenia that isn't chemically induced.  Take some time, let it set in, then get busy!  You are not alone.  You may be the only one or part of a select few in your immediate practice or area with your diagnosis but there are many of us out here.
    Personally for me I could never have imagined the impact of the National Neutropenia Network  (www.neutropenianet.org) and the SCNIR (Severe Chronic Neutropenia International Registry) http://depts.washington.edu/registry/.  At the age of 8 I was part of the second drug study for GCSF, also known as Neupogen.  The NNN and the SCNIR work hand in hand and often provide this drug free of charge.  It will change you and/or your child's life!  Connect there, send emails, make the phone calls, put the info in your physician's hands.  A rare diagnosis often means that the road is narrow, long, lonely, and hard...however, it does not mean that it isn't there.  There are also support groups on social networking sites for parents of neutropenic children and adults with neutropenia.  I am a part of one in particular for parents of neutropenics.  I've found lifelong friends there.  I've found mamas who understand the devastation of Neutropenia.  I've also found mamas/friends who've come to appreciate Neutropenia as I have.  As a parent who has been forced to say good bye too soon at the hands of Neutropenia and a parent who has sat countless nights awake praying over a hospital bed graced by the presence of a neutropenic angel, it could always be worse.  Those hospital admissions that are often more frequent than we'd like are at times some of the most enlightening processes of our lives.  Personally, I've come to be thankful for Neutropenia.  So many sick children, so many horrendous illnesses, so little hope for so many.  I'm thankful that Neutropenia is our only hurdle. 
   All of this said, please don't think that I'm making light of Neutropenia.  It's a hard condition to live with.  It's hard to always stay on top of every little thing.  It's definitely a condition in which the small things matter and add up quickly.  It doesn't offer breaks.  It's 24/7!  It is not impossible!  Hopefully if your life is affected by a form of Neutropenia you have a support team.  If not, I hope the references included here help you see the way a little clearer.  Speaking of support (smile)...thank you for supporting me in my efforts to make Joeli's voice heard.  Thank you for taking time out of your endless list of "small things" to read part of my heart.  Be Blessed!

A day I still struggle to comprehend...

So...I'm not one typically interested in the negative.  I try to speak positive and live positive so that my girls learn to see the good in all things.  That said....there are times and circumstances that prove nearly impossible to find the silver lining to.  I believe that lining is always there but often in the midst of tragedy "it is what it is"...terrible.  In my previous post I mentioned how we had such a great Christmas and how little did we know our lives were about to change forever.  Well, on January 14, 2007  Joeli spiked a temp.  This came a few days after seeing a new hematologist for a routine appointment.  I did the "normal" protocol for us and went to the ER for counts.  Her ANC was ZERO.  We were not admitted due to a reliable source of her infection.  After medication and instruction I took my sleepy girl home.  The next four days are, at times, foggy and overwhelming and at other times clear as day.  She remained sick and, on January 18,2007, after constant communication and endless days, nights, and prayers over my sweet girl I held her for the last time.  Pseudamonas Aeruginosa had invaded my precious baby's blood and because of a neutropenic episode she was unable to fight such a nasty gram negative bacteria.  Sepsis.  The word every parent fears when taking care of a sick baby.  It was very unexpected and honestly I felt as though I could not take one more breath.  I held her close, I kissed her sweet face, I unwillingly said good bye to the child I'd fought and prayed so hard for.  How do I do this????  I just kept saying "MY BABY, MY BABY".  I'll never forget the searing pain, the look on my sweet husband's face, and the utter confusion that had been thrown at me.  That day a piece of me died with my Joeli.  That day Heaven got so much sweeter.  That day she sang in the arms of the One who knew her before me.  As a believer my ultimate goal as a parent is to one day worship at the feet of our Jesus WITH my children.  I find comfort in knowing that she's already there.  I will never worry if she'll choose Him...HE CHOSE HER!  The anniversary of Joeli's death is quickly approaching.  Again, I find myself struggling to breathe freely.  Struggling with the pain in my arms as they ache to hold my sweet girl.  Wondering what she'd sound like now, what she'd like to do, who her friends would be, what the bond would be like between three sisters instead of two, etc...  I could continue but I won't.  Now, most importantly, she sings...she sings in praise of Him but she sings loud and clear for every neutropenic child and parent out there.  I pray people hear and I pray they listen.  I'll continue her song until I hold her again.  Until then.... 
   Consider Him, consider His love.  I wouldn't be here without it.  Be Blessed.

2006 brings new life and genetic testing!

In April of 2006 we welcomed our second baby girl, Brelan Renee.  At 8 lbs 12 oz. she was pure sugar!  Joeli was a big "sisser" and loved every minute of it.  Of course with this new life also brought a new worry.  Would Brelan also be Cyclic?  How would our lives change?  How would I find so much love within my own heart to love two angels?!  Well, Brelan never showed signs of Cyclic, our lives were rich with pink stuff, smiles, lots of laughter, and oh the love!  I'm amazed at how much love is already there when they put that sweet baby in your arms for the first time. 
  In the fall of that year Joeli had a neutropenic admission and we were informed of new testing.  GENETIC TESTING for Cyclic was now an option for us!  The paperwork was done and blood was drawn and shipped.  Weeks later we received the confirmation on paper that we were already so aware of.  Joeli was genetically Cyclic and was positive for the mutation on her ELA2 gene.  Our lives continued as normal but now with a peace of mind that there was a method to this cyclical madness.  Joeli was happy and healthy and Brelan was right behind her.  What more could this mama ask for.  Not long after the testing Christmas came.  Can I just tell you how much fun Christmas is with a 3 year old and an 8 month old?!  I'm sure many of you know but it still amazes me to think back to that Christmas and how blessed we were.  I couldn't tell you just how much paper Brelan ate and how loud Joeli squealed with excitement over each gift and aspect of this special time of year.  I remember thinking that one day I'd be the one to share with both of them the true meaning of Christmas and what our Saviour had done for us so long ago.  That Christmas was a very pivotal time for our family.  One we will never forget.  One for the BOOKS!  Little did I know how our lives were about to change.
      P.S. This blogging stuff is addictive and emotional!  Thanks for bearing with me and being so supportive.  Be Blessed!

Forms of Neutropenia

Although my family is affected by Cyclic Neutropenia, it isn't the only form of Neutropenia out there.  It's one of four.  Cyclic Neutropenia, Idiopathic Neutropenia, Autoimmune Neutropenia, and Congenital Neutropenia are all forms of Severe Chronic Neutropenia (SCN) that affect a person's ability to fight off bacterial infections.  For us, our CN is genetic but it doesn't have to be.  I was diagnosed at the age of 2 after countless infections and admissions.  My mother and half brother are also Cyclic so when planning a familiy we knew there was a chance our children would be also.  When Joeli was born the gene and genetic testing had not been developed so our plan was to watch her close for the first sign after her birth.  It wasn't long and she spiked her first fever which brought her first admission into our local PICU.  Her absolute neutrphil count (ANC) was ZERO!  This confirmed our diagnosis of CN for Joeli.  After a few days in the hospital, broad spectrum antibiotics, and lots of prayers and kisses from Mama and Daddy we were back on our way with a life long diagnosis for our sweet girl.  Many live daily with some form of Neutropenia.  Obviously I know more about Cyclic because that's our diagnosis but I also know that Neutropenia in any form brings a small group of us into the same circle.  The more we share about our own neutropenic experiences the more we know...and the more we know the better our chances at a "normal" life.  I use the term "normal" loosely!

Meet Joeli!

Hi!  I'd like to introduce you to the precious face behind this blog.  This is Joeli Lynn Mothershead.  My heart!  Joeli was my first daughter (I have three).  Joeli was born in August of 2003 and this mama was forever changed from that moment.  Joeli left my arms for the arms of our Heavenly Father on January 18, 2007 due to an overwhelming infection in her blood combined with Cyclic Neutropenia.  Neutropenia left her with nothing to fight with.  I am new to the blogging world.  Well, new from an author's perspective.  My purpose here is to give a voice to my sweet girl so that no one else has to endure the pain she and our family have.  Neutropenia doesn't have to remain "rare" by this world's current standards.  I'm not just the parent of a Neutropenic...I am a Neutropenic.  Our Neutropenia is technically Cyclic Neutropenia by genetic mutation to the ELA2 gene found in the bone marrow.  Many are affected by Neutropenia in it's different forms and many remain undiagnosed or misdiagnosed.  Good news is we don't have to remain that way!  Thank you so much for taking time out of your day to visit and to meet one of my angels!  Be Blessed!