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!

The Quiet

 Hi y'all.  So...it's been a while.  Mileigh and I have both had hemoc appointments since I last wrote and I'm happy to report that so far all is well.  Most neutropenics have a bone marrow biopsy annually.  That has not been the case for us.  For whatever reason it wasn't done.  With our textbook like complications with cyclic neutropenia it's been fairly easy, for lack of a better word, to control.  You could book a vacay by our drops so prevention has proved to be something that is quite attainable.
  My last bone marrow was completed in 1985...I was 2!  I remember it..."traumatic" is an understatement.  Obviously a new one was needed so the discussion with my hemoc was had.  Our pain threshold is high for obvious reasons but the anxiety level for me regarding a BMB was thru the roof.  I'll say the procedure went well and was less than traumatic.  No results to report at this time and honestly it might not be a topic I visit again soon.
  Mileigh is so great.  She is so beautiful and so happy and so healthy.  I am so blessed.  I know that she is cyclic by genetic mutation and I can certainly tell when she drops and struggles through the day to day but I am so thankful for her health thus far.  Her hemoc appointment went well.  She was diagnosed weeks after her birth after sending her blood to a U.S. lab for testing.  A bone marrow wasn't needed at that time.  She has done so well. 
  We are thankful for GCSF but we also know that this medication was not intended for daily use so as a mama my concerns often get the best of me for her future.  Noone really knows what decades of daily use will do but we do know what untreated neutropenic episodes will do and I'll take GCSF daily with a smile because it gives us life!  Mileigh will have her first bone marrow biopsy and dexa scan after the holidays.
  Seems like life has been so busy lately with everything but the quietness of the holiday season is upon me and my heart trembles with that all too familiar ache.  I've said it before but music is my language.  Lately I find myself taking those quiet moments to cry out to the only One who can hold my heart.  Often the words fail...music never does.  Not for me.  That said I want to post a song that I ran across and it's not one that I can really sing myself and get lost in but it spoke to me.  I hope Joeli has the best Christmas.  We miss her so much.  I cannot fathom Christmas in Heaven.  It was once my favorite time of year.  That's a tough topic for me now.  I love this time of year but I don't love the hurt that comes with it.  I look forward to the day that I sit with her in the quiet of Him and celebrate His birth TOGETHER.  Take a minute and listen...I'd love to hear from you =)  Be Blessed!
http://youtu.be/LUtc_olEiRY

Storm the Throne

I stormed the throne for a time, for one that I could call mine.
He saw my tears rain and blessed me with three to name.
Suddenly I was more, much more than before.
I stormed the throne with urgency, for you see I needed Him to hear me.

Storm the throne, He hears all.
Storm the throne, He catches when we fall.

I stormed the throne for them to see, I wanted them to grow in His love and mercy.
He grew them up and made them strong, that doesn't always take so long.
Now, you see, I storm His throne for me.
I storm His throne to see her face, my brokenness is welcome in this place. 

Storm the throne, He hears all.
Storm the throne, He catches when we fall.

I continue to storm the throne, this is not my home.
Precious faces look to me, I storm His throne for them and for me.
I want to teach them the road to take, there are far too many that lead to heartache.
Storm the throne my blessed three, Storm the throne and wait for me.

Today is calm and that's ok.  The calm before the storm or so they say.

Storm the throne, He hears all.
Storm the throne, He catches when we fall.

Just Today

   Hi =)  Today has been rather slow.  I have Mileigh at home with me as she fights an infection in hopes that her counts hold.  Her counts were elevated as she was on the up side of her nadir and I'm thankful for that.  I think even as a neutropenic parent I sometimes take for granted the "normal" range and just today. 

 Just Today:
   I wake in a fog and my attention is immediately directed to the sleeping child in the room next door.  Has she rested enough?  Does she have a fever?  Dear Lord, please give her neutrophils. 
  As I peel myself from the covers I try hard to shake the pain.  Pain from not moving all night, pain from injections to give me today to take care of the little blessings I get to call "mine".
  I make my way across the hall and flip the light and there she sleeps...cool as a cucumber.  Thank you, Lord.  Thank you for holding her tight through the night.  Thank you for giving her the tools to fight.
  Her sister wakes first and immediately checks on her before heading to go through her check list getting ready for school. 
  The coffee brews, lunches are packed, teeth are brushed, and those groggy sleepy heads are beginning to fully wake.   How beautiful are these bed head children of mine!  She kisses her sister and tells her she hopes she feels better.  She heads out to do her best and this right here is why I wake.  This right here makes me thankful for Just Today.  This is it!  This is not just any life, not just any day, this is mine!
  I pray for those who fight with less than enough.  I pray for those who's tools are less than sufficient.  I dream of what life with three girls would be like.  I wonder what words of wisdom Joeli would have for me.  I listen for the random wisdoms that define Brelan and Mileigh.  I pray one day they know their beauty. 

  Much of this is probably completely random but this is me.  This is today.  This is mine.  This is real.  Take a minute today, a minute to feel.  It might be all we get.  Just Today.  Be Blessed!

Hope Today

    There is hope today!  Hope for change, hope for awareness, hope for more.  What do you hold hope for?  What is the hope that compels you forward on your road in life?  Often, as a neutropenic and also as a parent of a neutropenic, life becomes stagnant.  We get lost in just trying to get through another day, another drop, or cold season with no illness.  Praying ourselves through another school week with no extra germs.  I choose hope.  I choose to put my efforts into being different and maybe making some not so comfortable decisions in hope's name. 
    Today started as an average day.  I woke Brelan and Mileigh for school.  I packed lunches, fixed breakfast, started laundry, and fixed hair for two of the cutest little girls I know.  As I pulled through car line I saw hope.  Did you hear me?!  I SAW hope!  Hope was walking into school hand in hand.  That's my hope, that's your hope, they're OUR hope for tomorrow.  It sends my mind reeling to several projects that are still in the works.  I think of their friendship...not just their blood relation.  I think of my neutro friends and family.  I think of the teams of people that are committed to working together all for one purpose.  To be heard.  To give hope.  To BE hope.  All for Neutropenia.  All for healing.  All for people.
   To sit back and read or look into our lives for a minute of time leaves me feeling a bit overwhelmed.  I take that as it's just bigger than me.  This hope, this condition in all it's forms, this life....it's bigger.  He's bigger.  I think of Joeli and what she'd sound like explaining Cyclic Neutropenia to one who has never heard.  I wonder what words she'd choose.  I think of the attitude she'd have in regard to her own condition and in regard to the protection of her baby sister.  Some say her words were stolen from her.  Maybe by some definitions that's true.  Not by mine.  My hope is that I bring her words to life in a way that honors her.  Of course I dream of the day that I can hear them come from her beautiful little self.  This wasn't the way I'd planned.  I knew she was a special little girl. I knew she was destined to make a difference.  Guess I'd never considered the not so common avenues that task could be accomplished. 
   I hold tight to my God and my faith when the road seems too long.  I find Hope there like no other.  I see Joeli, Brelan, and Mileigh who were given to me for such a time as this.  They've taught me more than I could ever dream of teaching them.  He gave me hope all wrapped up in three beautiful little girls.  I look forward to watching them grow and seeing them change and become who He wants them to be.  I feel privileged to be witness to Brelan and Mileigh and seeing their relationship change and grow over the years.  I am blessed to have watched Joeli grow for three years and five months.  I find hope in knowing that one day I'll see them all together at His feet.  All three of my girls. 
   There is hope for us.  There is hope for us as people and there is hope for us as neutropenic patients.  Live loud!  Don't lose your hope!  Be Blessed!

The Struggle

    It's been a while...  I'm a pretty good talker once the heat of the fire dies down some but when the flames are roaring it's a different story for me.  I'm on of those "head down, one foot in front of the other" kind of people, till it's safe to look up again.  I don't speak much of my own health outside of me being Cyclic.  I don't want to get hung up there or for it to ever be about that.  The reason I write and the reason I talk is for her song to be heard and to use that voice to fight for Mileigh and other neutropenic children everywhere.  It's an outlet for me to refer back to when a fight is required. 
   That's all fine and good but this post will include some of my personal struggles that have occurred recently.  In 2012 I was admitted for neutropenic episodes several times with an average inpatient time of one week.  That's enough of looking at four walls to make anyone nuts!  I despise being admitted into the hospital.  It's been nearly one year since my last admission...PRAISE THE LORD!  However, a couple of weeks ago I was one fever degree away from the confining lines of intravenous antibiotics and increased G-CSF.  I haven't felt "right", for lack of a better word, in a while.  Life and it's daily demands have always been a struggle at times.  It's always required a certain degree of pushing through.  Typically I feel better once I've completed whatever it was that required that push, be it a spin class, a softball game, or even the laundry on some days.  Lately however, the push is nearly impossible and I do not feel better after.  Tasks are left incomplete and I'm left exhausted.  I don't even like typing this to be honest right now.  It sparks a feeling of defeat in me like no other. 
  I was able to avoid the admission a couple of weeks ago with monitored counts and daily IV infusions for several days.  I stayed in constant contact with my physician and he was truly a Godsend.  I appreciate his respect for Neutropenia.  I also appreciate his respect for me as an educated patient who knows my body.  His first response was admit and air on the side of caution.  I, again, despise these admissions  and my temp was hovering in the "low grade" category.   We talked and came up with a treatment plan that worked for both of us...I could stay home as long as I agreed to daily IV medication, rest, and constant contact with him.  It worked great and I was able to allow my body to respond at home and the fever never spiked.  AMEN, AMEN, AMEN!  While I'm here...I do not in any way refuse admission when it's absolutely necessary.  It's a fine line we, as neutropenics, walk in regard to admission.  Hospitals are germy places and precautions are serious so, for us, when it's possible to treat at home we do. 
  Anyhow...I write this post to just put me out there a little more.  Neutropenia, regardless of source, is painful and exhausting.  The struggle to live a somewhat normal life often gets put aside because it isn't the point.  The point is to make it and to truly live.  The struggle never goes away.  I choose not to focus on the struggle most of the time because it's just part of life...we all have one and I don't owe the struggle the majority of my time. 
  This post finds itself nearly a month after my last one.  In that time I may have struggled with my health but I've also been blessed to be in contact with people who have truly encouraged me.  Encouraged me in my writing, my fight, my parenting, etc...  I appreciate you.  I'm not sure where this road is leading and I'm uncertain of what's next for Joeli's Song but I am absolutely certain that no matter the struggle, her song will be forever heard.  Thank you for blessing me!  Be Blessed!

Looking Back...

   So, I had a detailed appointment today with my hemoc....Eh, I'll go there another day.  I came home after all was said and done and for whatever reason decided to think back on and even dig into some of my old journals.  I used to physically write in journals daily...long before the blog.  My head was swirling with so much information and planning regarding things coming up in the neutropenia world and I began to think about my Joeli and my Brelan and my Mileigh. 
   I was so afraid when I was carrying Mileigh.  Afraid that she too would be born with failing marrow.  She was.  It took several months to get things settled and the first two years involved several admissions.  Such is life....the neutropenic life.  I came across a journal from the year of Mileigh's birth and found an entry from within one of her hospital admissions.   It's fitting for how I feel right now.  In my opinion, Neutropenia, in all it's forms becomes a "cyclical wrath".  We go through a series of tests, results, the balancing acts of neutropenic life, then just that quickly infection comes in and it all goes to hell in a hand basket and the process repeats itself. 
  Ready, Set, Go....then get ready to do it all again because it WILL come again!  Anyway...here's that entry =)

Here In This Place

 

We're here once again my precious child, we'll be here for just a while.

 

I see you with your precious smile, shining through the hurt all the while.

 

You remind me of her and how she laughed, even in the midst of this cyclical wrath.

 

How I wish she were here to hold you and tell you how strong you were, that was just her.

 

I pray you see her in your dreams tonight, for I know that she is holding you tight.

 

She was a precious soul in every part, know that she loved her baby sisters...ALL HEART!

 

Joeli Lynn, Brelan Renee, and Mileigh Beth, You three share a bond that amazingly takes my breath! 

Where Joy and Sorrow Meet

    Hi there!  Please take a minute to listen...

                           

   This is a song that is so dear to me...music is a language for me when there are no words.  Often we are overcome with a sense of being defeated.  No matter the cause, defeat is often the effect.  I'm in a place of defeat but thankful to be a child of the One who was not defeated. 
  I miss Joeli more than words can say.  When things become dark I'm not always quick to run to His feet but I eventually end up there and it truly is where joy and sorrow meet.  I find her there.  One day I'll hold her there.  Oh Lord, give me strength.  I have so many who are close to me who are hurting and who are in places of life that we'd never want to be.  Somehow I have to find the good here.  I feel compelled to do so.  Otherwise, ears become deaf, mouths become silent, and hearts become hardened to a condition that is already fighting to be heard. 
  Don't lose hope.  We are not called to be hopeless.  Encourage, fight hard, and sing loud!  In times like right this moment it hurts to take a breath.  I feel like part of me is gone...that's true.  The pain often becomes blinding.  The treatments I'm blessed to receive through GCSF and physicians who listen yield guilt that is borderline impossible to bear.  She deserved this too.  Every child and/or person affected by Neutropenia deserve to be treated with appropriate and educated medical treatment no matter the rarity of the condition. 
  Are you in the throws of defeat?  I'm begging you, refuse to allow defeat to send Neutropenia awareness to a holding cell of solitary confinement! 
                                              Sing LOUD!

Bravery Defined...

  Do you look to anyone in your life and see a portrait of bravery?  I have been blessed to cross paths with several people in my lifetime who clearly define the word "Brave".  One of them calls me "Mama" =).   In the world of social networking, I've made life long friends whom I've never had the privilege of meeting and have also become a member of intricate groups of mothers who fight for their children's wellness.  I limit myself on my involvement at times because it's easy to become lost in posts and comments and issues.   Occasionally my name will be thrown out there due to my experience with Cyclic Neutropenia and Joeli's Song.  Last night was one of those nights. 
  For my family, GCSF injections are just part of life.  Mileigh received her first one at 3 weeks of age so she knows no different.  Many may not see that as a blessing but it very much is in it's own way.  I remember starting GCSF in the first clinical trials before dose regulations and before much was known in the way of side affects...she will never know that and that makes me smile.  It's often difficult to explain to our babies that we need to give them a "shot"...the word itself causes grown folks to cringe.  Typical children require that conversation once a year or so in regard to immunizations or maybe an injection for a random illness here and there.  Being required to have that conversation with your 2 or 3 year old on a daily basis can quickly become exhausting and somewhat depressing.  We become the "bad guy" in order to keep them well and that's a hard pill to swallow when the stress of it all has compiled. 
   All of this said, we are pretty creative creatures and often come up with ways to explain and teach in even the most difficult of situations.  I've used countless analogies as to what exactly GCSF does and why it's so important that Mileigh gets her injection.  I'd never thought to video her during this and I'm not sure why, other than it was just a normal procedure in our day.  One of my friends in one of those virtual settings threw my name out there last night in a conversation regarding Mileigh.  Mileigh is now 5 but started last year giving her own injection.  Once a part of the conversation I thought maybe a video would help.  Often the nerves of a child, and even an adult, can be calmed if they can just SEE what's going on.  It gives a certain degree of control to them.  So...I talked to Mileigh and explained to her that there are other kids like her who take shots every day but sometimes they get very scared.  I asked if I could video her on my phone so that, that little one could see how brave she was so that they could be brave too. 

 

  For those of you who know Mi, she was eager to help and ready to hit record before I had the injection drawn up.  I love that about her.  She did great and I posted the video so this mama could see and show her child a new perspective on injections.  Before I could set the phone down it was lighting up with notifications of response.  I needed that encouragement just as much as they needed a fresh look into GCSF injections.  I wanted to post the video for you to see.  I am so proud of my MiBeth!!!  She is fighting for Neutropenia awareness hand in hand with Joeli.  The vision of that nearly takes my breath because she never got to hold Joeli's hand on this earth but nothing, not Neutropenia or anything of this world, can take away what all three of my girls share and what they were born to do!  Neutropenia may never affect you or anyone close to you but please know that it is a silent, daily struggle for many.  Please share and Be Blessed!
 

 

 

Questions I Never Wanted To Hear

  How often do you take the time to truly listen to your children?  Well, for me, I find myself rushing through daily tasks begging for one more minute because I don't seem to have enough hours in the day.  We don't always find ourselves seated to dinner at the same time and/or place in my family.  However, when we do I try to make it count.  In a perfect world there would be enough room and time for everyone and no one would bring a phone in hand.  I try to make it a point to leave my cell away from the table for the most part but there's an occasional slip. 
   I've been thinking on this particular post for a while now and that's not like me.  I typically decide to blog on a whim and sit down and out it spills.  However, this has been one that has truly taken me back.  About a week ago I sat down at the table with Brelan and Mileigh for dinner and in usual fashion Mileigh was more focused on yakking then on eating.  Ever been around one of those children that you have to constantly remind them to get a bite?  Yeah well that's Mileigh...for every single bite! For a while I thought and even hoped it was a phase and maybe that's true but if so it's one that is here to stay for while.  I'll take her yakking any day though.  I remind myself that there will come a day when she doesn't want to tell me every single detail and I'll think back on these days to get me through. 
  Anyway...speaking of details right?!  We were sitting at the table and it was soon after I'd returned from my trip to New York for Joeli's birthday run so Joeli's birthday was still very much in the forefront of every one's mind.  MiBeth is full of questions and often doesn't hear the answer to her current question for asking the next one.  As you can imagine, emotions were still running high and I'd found myself in a fog at the table, exhausted from the day, just watching my girls enjoy dinner...well, Brelan was enjoying it LOL...Mileigh was yakking away.  I don't think I even know what all she was saying because I was just watching them from what seemed like a far away place although I was seated right next to them.
  I was quickly thrown face down and sucker punched back to the reality that I live in when Mileigh looked up to me and said "Mama, am I gonna die like JoJo did because I'm 5 years old now?".  ARE YOU KIDDING ME RIGHT NOW?!  I was floored...what do you say to your 5 year old who, understands Cyclic Neutropenia to her fullest capacity, when she questions her own death????  I took a deep breath and cleared my throat and looked at this amazing child of mine and said "baby girl, we never know when it's our turn to go but I do know that today you are here and today we have neutropenia and JoJo doesn't".  She latched onto my words like a parent of newly diagnosed child and said with surprise "JoJo ain't neutropenic ever again?!".  I could only smile when I answered her..."she sure isn't".   Just like that, she believes.  Oh to have faith like a child!!  I've come to understand exactly what that means when He speaks of that in His Word through parenting Brelan and Mileigh through Joeli's death and now legacy in this life. 
  I walk this life broken hearted for part of my heart is no longer here but this night I was quickly reminded of the love He has for me no matter what state my heart is in.  I felt like I'd been punched in the throat when those words came from my little girls lips.  She should never wonder those things.  She shouldn't have to ask if she is going to be ok or if her big sister is ok now.  There's so many things, in my mind, that I say she shouldn't have to question or try to understand.  Who am I?!  This world is far from fair...  I'm not a parent who raises my girls to think this world owes them a thing or that it's going to treat them properly let alone fairly.  Joeli came into this world a fighter and by my own definition fought her way to the ultimate healing all the while leaving a voice and a song to be forever heard.  Brelan came into this world with a saving purpose...she saved this mama from the grave and I know He has big plans for her sweet soul!  MiBeth came here with a bang and hit the ground running!  She has a connection with Joeli like I've never known.  I can't explain it.  She never met Joeli but swears she knows her.  Brelan was so young but demands that her memories are her own.  MiBeth is a fighter to the core and I can't wait to see how she is used in the world of neutropenics! 
  I've said it before but I'll say it again: Joeli made me, Brelan saved me, and Mileigh sanctified me!  God uses Brelan and Mileigh to restore a faith in me that I feel gets lost often.  I find myself an emotional wreck...again...and here comes Brelan or Mileigh with an insightful and from the heart comment or question that reminds me who I am.  I don't mean who I am according to the definition of this world but who I am in His eyes. 
  I rarely get this life right but I am blessed by the gifts He gave to me in Joeli, Brelan, and Mileigh.  I wish Brelan and Mileigh didn't have to understand such grown up emotions but I'm continuously taught by their hearts.  I'm honored to call them "mine" and oh if I could stop time!!  For now, I look to these conversations with my girls and remind myself to slow down and clear the fog for a while.  Sit down, listen, and enjoy the smiles.  What I'd give to see three smiling faces around my kitchen table!  Oh what a day it will be when we all get to His kitchen table and all my girls are with me.
   Listen to your babies...they may be precious messengers from the One who hopes to one day see your smiling face at His kitchen table.  He is ABLE!

Love Grows...Still!

  I couldn't post my NYC celebration for Joeli without posting the intimate and heart felt celebration given by Joeli's baby sisters and cousins.  Brelan and Mileigh may not have tangible memories of Joeli because they were so young but they know exactly who she is and what she means to them.  Mileigh, who is also Cyclic, knows that Joeli's Song fights hard for her too.  Some images I'll keep in my heart.  Others I'll share with you.

                  (sweet girls who grow closer to an angel with each passing moment)

                      (Happy 10th Birthday, Joeli Lynn!  "See ya on the flip side"-JLM)

                   (Live strong, sing loud, make the only One who matters proud!)

 When I returned from NYC it was early morning hours and as I sat at the feet of my sweet Brelan and Mileigh's beds thanking God for giving them to me I cried tears that only He can understand. 
  The following afternoon I picked up a cake and a balloon order complete with polka dots and pink icing and a truck full of excited little girls.  They have an uncanny connection with Joeli and for that I am thankful.  That is one that is divine, in my opinion.  Joeli's role as their big sister has not been defeated by her passing.  I respect these little people that I am privileged to call "mine".  I respect their love for a big sister they never got to grow up with.  I am so blessed to be the one who sits back and sees the love they share even if in different worlds.
  I'll spend this life "singing loud" and listening when they do the same.  Be Blessed!

My partner in awareness, my friend, thank you!

   Hi there!  I've been pondering what exactly to say about Joeli's birthday and birthday run.  I am in complete awe of the response to Joeli's birthday and to the Ella Jewell Foundation last week.  I want to include a few photos before I continue.

 (the release outside Yankee Stadium)

 (A night in the city with my best friend, Leigha, from college and Kristin)

                                (I love this friend of mine!)

   (The back of our team shirts in honor of my sweet girl!)

                             (Bobby and Kristin McGuinness with myself post race)

                         (The beautiful cake because there was definitely reason to celebrate!)

    These images are just a few but some that have very special meaning to me.  Some I will cherish forever.  Eight months ago I launched this blog in hopes that people would hear.  In my heart I knew Joeli was destined to do big things.  Boy, has she once again surpassed everything I could have imagined!  Some of the faces in these images may be familiar to you and not so much to others.  Kristin McGuinness, you my friend, my partner in awareness, have been an incredible piece to this puzzle I call "life". 
  Kristin and Bobby McGuinness have two beautiful daughters and one of which fights Neutropenia in the SCN form daily.  They make a pretty amazing team!  What a blessing it was for me to be able to hang out with them and play with their sweet girls before we hit Yankee Stadium for the 5K responsible for raising funds to benefit cancer research!  Our team for the Ella Jewell Foundation raised over 15,000.00 to go directly to neutropenia research!!  That's HUGE! 
  I look forward to the day when our children no longer have to consider neutropenia in any form.  There's a cure out there, we just have to find it.  Research is paving a way and I'm honored to be a small part of that.
  As you probably can imagine, Joeli's birthday is a very emotional day for this mama.  One of the best and happiest days of my life is now filled with only memories of the short time we shared and thoughts of what should have been.  I was left speechless when I saw balloons for Joeli outside the stadium.  Each team member held one..42 in all.  I held 10.  I included a photo of that release that was lovingly taken by a fellow runner.  I'm left amazed at how people can love a little girl they never got to meet.  Simply amazed.  I spent much of the run alone (and not always running).  I ran/walked and reflected on what had just happened outside that stadium and cried for the sweet girl that I missed so much.
  I cried tears of happiness because I got to call her mine.  I cried tears of happiness for the children her story may one day help.  I cried tears of pure joy for the beautiful people God has allowed to cross my path and hold me up on such tough days.  The words escape me.  I'm left at a loss. 
  Kristin McGuinness, I am amazed at your strength and in awe of the love you seem to find for so many!  Thank you for loving my girl and thank you for being my friend!

10 years ago today...

   Ten years ago today I became brand new.  Love was redefined all because of you.  You made me a mama for the very first time.  I love you so much and am proud to call you "mine".
    Today my chest is heavy and my heart breaks for what should have been.  My arms ache for you...I miss you, Joeli Lynn.  I lie awake and think of happy times.  I'm so sorry I didn't get to say good bye. 
    Ask Jesus to sing to you today.  I promise I'll hold you again one day. Happy 10th birthday my beautiful girl.  I'm so proud of you...you're changing this world!
    I love you, all heart!  Don't ever forget that part :)

Still...

  It's midnight here in south Alabama and still I wake.  My bags are packed for New York, the girls' lunches and snacks are made for their first day as second grader and kindergartener, the house is settled and I've rounded on those who sleep more than once and sniffed their sweet heads, and here I am...still.
  My home is still and still my mind races of what is to come in the next 24 hours.  I've never been to New York, I've never met so many folks face to face who care so deeply for a child they never got to meet, I've never faught so hard than in these last 6 years, 6 months, and 28 days.  I find myself actually hearing the stillness...is that possible?  There's a rhythm to it.  The relaxed breaths from across the hall, the click of the AC, the random sighs from one of the girls, then the pounding of my own heart.  How is it possible for a heart so broken to still function with resounding rhythm?!  Be still. 
  Psalms 46:10 says to "Be still and know that I am God"...Surely He is.  Surely it is Him who strengthens me in this stillness.  I wonder what life would be like if this wasn't my life.  I wonder if I make her proud.  I wonder if justice will ever be.  Surely.  I wonder and then I am still...still in my thoughts and still in my heart.  Still, because if I continue to wonder it will quickly overcome.
  I had the privelege of putting my arms around a lady today that has recently been thrown into the world of sudden loss and for a moment, in that public place, all was still.  No words were spoken...they weren't needed.  I understood, so did she.  I often fear not being understood or being taken wrong.  There's a stillness in this life that follows and intrudes on even the busiest of times.  Life becomes still in an instant and all else fades away.  I remember the times that I was still with Joeli and she was still with me.  I look on those memories now and smile.  There's improvement there...there was a time when even happy memories became searing pain. 
  The tears that fall set fire to my face.  The sting reminds me...reminds me that here I am...still...still in this place.  He's not done with me.  I have a job to do and people to reach and a song to make known...Joeli's Song.  I hope to make her heard in New York, I hope to do well by her, and I pray to make some headway in Neutropenia work.
  Be Still...

Joeli's Birthday Run

  Lately my thoughts and actions have been racing in every direction but "productive" and blogging has somehow found it's place smack in the middle of the chaos.  For those who know me personally you have heard about Joeli's birthday run but for those who keep up with us via the blog this is probably the first you've heard about it.  I am honored to be a part of The Ella Jewell Foundation www.ellajewellfoudation.com and blessed to call Ella's sweet mama "friend".  The Ella Jewell Foundation raises awareness for Neutropenia and also raises money for the SCNIR (the registry that researches and provides our medication). 
   This year I was presented with the opportunity to be a part of a 5K hosted in New York inside Yankee stadium.  What's even more mind blowing to me is that they wanted to honor my sweet Joeli for this race!  Wanna know how cool God is?!  It wasn't planned this way but it happens to fall on her 10th birthday!!  August 18, 2013 my sweet girl would be 10 years old and I'll be running for her along side many other supporters of cancer research.  I am borderline speechless!  (keep in mind I did say borderline so this post isn't over) haha. 
    I have mixed emotions about this year.  This will be the first year that I am away from my family on one of the most important days of my life.  The day that sweet girl was placed into my arms for the very first time will forever be one of the best days of my life.  I struggle with my own sadness on that day but not because the day is sad...because I miss her.  I miss what should have been.  This year will be very different.  I won't have Chad, Brelan and Mileigh by my side.  I will have a team of new friends by my side who care about and love a child they never met and that my friends, is an honor. 
    We tend to keep Joeli's birthday celebrations private and just within our own little family on that particular day.  We get a small cake, complete with candles.  We visit her marker and release balloons.  We add a balloon for each year.  This year I will release balloons in New York.  Part of me is excited about bringing my Joeli to a new part of the U.S., another part is sad that I won't be standing near her resting place at that time. I will definitely celebrate with Chad, Brelan, and Mileigh once I'm home so Joeli will get double the balloons this year...I smile when I think of what her potential reaction would be to the double celebration.  This reminds me of a recurring dream I often have of her.  Her smile, her laugh, her eyes that her soul shines through, and all that is Joeli reminds me to smile even when it hurts.  As parents we tend to dream FOR our children, help them set high goals and reach them, push them to be whatever they want to be...the difference for me and Joeli is I dream to see her.
    Each new day that we are blessed to inhale and wake our sleeping children is a gift...I'm required to meet Joeli in my dreams for now. 
    Take a minute and look into the link I listed in the beginning of this post, pray for the runners, pray for the families affected by different forms of Neutropenia, pray for the physicians who care for us, pray about maybe what YOU can do.  Encourage with your words even if it's just to share what's been shared with you.  Consider a financial donation...none is too small and each cent matters. 
    I'm going to be quite blunt at this point.  I NEED your prayers.  I need to run this race for my girl.  I need for this breaking heart to be still.  I need to be strong at a time when being strong is nowhere in sight.  Thank you from the bottom of my heart!  I am blessed by you!  I am blessed by your support and your comments of encouragement.  Thank you for reading and sharing and for loving a child many of you never got to meet.  She was truly one of a kind!  Here is a direct link to support Joeli's Birthday Run (http://longrace4tate.com/joelis-birthday-run/)    Be Blessed!

A War...

Please be warned...this post is lacking some of the careful thought in regard to choice of words that I typically try to exhibit.  The title is pretty accurate to me.  At this point in my life the word "war" doesn't send me reeling to a civil reinactment or a time when regular people were fighting for their freedom and often losing their lives.  NO!  Instead I'm quickly thrown into my own battle every waking moment.  A battle to be healthy, a battle to live, a battle to be positive, and even a battle to force my Joeli into existance because those who are no longer here are so easily forgotten. 
  Have you forgotten?  I don't get that option.  Period.  I'm tired.  I'm tired of hurting.  I'm tired of feeling my heart break each time I look at my girls and she is missing.  I'm tired of missing out on things because I physically hurt.  I don't understand why my life has to be such a struggle, why I am required to fight so hard just for some kind of normal.  When I say I fight for her people say they get it..do they?  Do you???? 
  I feel compelled to fight for your child when no one faught for mine.  I'm a mama who knew full well the war she was in and shouted it to the top of my lungs and it was as if those around me, who could help her, were deaf!  Maybe they only thought they knew the realness a parent goes through when they've "done all they can".  How stupid!  Unless they've held their own lifeless child and kissed their cold lips how in the hell can they know?!  Part of me feels like I should apologize for putting these emotions into words because I know they're harsh but everything in me won't allow it.  I'm not sorry and this is REAL! 
  I wanted my little girl before she was created and I want her now!  I'm honored that her story has helped so many but for the life of me I often wonder why no one else's helped her??  I rack my brain to figure out what I did wrong and what I could've done differently and I come up with nothing but "why".....why, why, why couldn't I make a difference then?  Why didn't people hear us then?  Why did the world wait till her life was stolen from her and everyone who loved her before they decided to hear?  I seldom let myself go here to this place...it's truly one to stay away from but it's been a long time coming. 
  Life vs. War...what if they became the same?  They did for her, they did for me, what's your story?  Cyclic Neutropenia for us was like being thrown into a war with no weapons.  GCSF wasn't an option for Joeli.  I often feel like it shouldn't be an option for me.  How did physicians expect her to fight without equipping her?!  How do I choose to equipp myself when she didn't get that option.  It simply isn't fair.  I know this world isn't fair and my knowledge of that comes directly from the fall of man that my Jesus talks about in His word but in the midst of this war I JUST WANT MY BABY!!!! 
   I want to hold her again, smell her, feel her, watch her grow!  I don't want to release balloons on what should have been her birthday party.  I should know what it's like to get ready for our last year of elementary school.  I should already know what it's like to live with a 10 year old little girl and I DON'T!  Being the big sister shouldn't fall solely on Brelan's shoulders and it does!  She doesn't get to be Joeli's little sister....not for real.  We all know she is and she knows she is but how is that ok?!  It's not!  Mileigh is a different story.  She is now the only neutropenic child and she didn't have to be.  She should have Joeli here with her to understand her hurt, to understand the pain of expanding bones trying to accomodate the new neutrophils, to hold her hand through lab work and hospital admissions....REALLY?!  
    I NEED her now. I need all of my girls right here in this oversized chair with me at the end of summer figuring what we can do today. Instead I have two little girls in this oversized chair asking "do you miss Joeli, mama"? They know this pain all too well. They know because this war is our life
 

 

   
   

A Fight Worth Fighting!

  For years I've been tossed around as a neutropenic patient.  I have found physicians here and there who tolerated the rareness of Cyclic Neutropenia and all that the condition entailed.  I have been in situations with physicians where I thought they were truly interested in my condition only to be let down years later when that interest was desperately needed for appropriate treatment.  As long as my health was maintained and severe infections were kept at bay all was well. 
  Over the last couple of years I've run into several severe infections that required hospital admissions, picc lines, empirical intravenous antibiotics, and pain medication.  For the most part things were handled well but I felt like that child who just couldn't be satisfied.  I needed communication on my condition and due to the treatment and the doses I also required major pain control.  As a result of these needs, I was left feeling like I was causing a problem and becoming a patient who required too much.  That's a terrible feeling when you rely on these health care professionals to continue a healthy lifestyle.  I'd love to be a "normal", healthy person who didn't require additional medical attention.  The fact is, I'm not "normal"...not by today's medical professionals and I DO require more medical attention and interest than most. 
   After years of advocating, talking nurses through my assessments, schooling hematologists on my condition, and teaching neutropenic precautions in the midst of febrile neutropenic episodes, I was done.  DONE.  I didn't just NEED a physician who cared enough to learn about what I had, I DESERVED one!  We all do.  I have no problem having an educated conversation with a health care professional and explaining what I know and have learned about my own body and condition.  Matter of fact, I welcome it.  I welcome anyone who will listen.  I do not, however, have time for those who work in the health care profession and think they know it all and that I'm just a cocky patient/mom who thinks I know it all.  Every now and then if we all take the time to listen to someone else, we might just learn something.  Maybe that we don't know all there is to know after all and that it doesn't take a medical degree for someone to understand their own condition that they live with on a daily basis.
  I have fought to be heard my whole life.  Many of those fights were won easily and others not so much.  For those of you who know me personally, you know I don't mind making myself heard when it truly matters.  I have found that unfortunately some do not care how passionate you are about your or your child's care.  In those instances, I've learned to recognize them for what they are and move on.  Some folks will never hear.  They're too busy focusing on the next words coming out of their own mouths that they'll never process what's just come out of mine. 
  All of this to say KEEP FIGHTING!!!!  It's worth it!  After 30 years of fighting to be heard I finally have a physician who is truly interested in Cyclic Neutropenia and so much more...ME!  He's concerned with how I feel and understanding where my counts are at and bone pain and everything else that goes along with the different forms of Neutropenia.  I've only seen him twice so far so we haven't addressed a Neutropenic admission together yet or an infection but to prepare for that he chose to give me his personal number so that if I'm not taken seriously in an emergency room once again, I'll have back up.  It was a small gesture on his part...one he probably hasn't even thought about again.  It was HUGE for me.  In thirty years as a patient and as a mother of a patient this is a first for me.  Proves to me that this long and tiring fight has been worth it. 
  I could easily get lost in the "what ifs"...I refuse!  What matters is that I'm still fighting and living and making a difference. 
  Fighting for the care you deserve is a FIGHT WORTH FIGHTING!  Don't give up!

Violation by Genetics

  Long time no see!!  Things are definitely crazy in our family this summer.  From softball to home improvement projects.  We are currently guests in Chad's parents' home while work is being done in our home.  Hence, my time to write =). 
  About "violation"...  I'm aware that's a pretty broad topic but for this post, the word "violation", will be in regard to our own bodies.  I find myself feeling violated by gas prices, cost of living, medical professionals, etc.  Recently I've even felt violated by my own genetic make up, both as a neutropenic and as a parent of a neutropenic.  Don't get me wrong, Mileigh and I are doing well.  GCSF is working and we live a "normal" life, for lack of a better word.  That said, the violation is still felt from within. 
   Our busy schedules and active lifestyle often comes with a heavy price.  At the end of the day my body is revolting.  During our nadir that revolt is extreme.  The sun sets and girls are bathed and tucked in and I finally find my tub.  When the softball games are called and the dirt is washed off and all is quiet, this body screams.  The soreness and tiredness is more than a "good hurt" after a workout.  It's a hurt that just can't go any more.  So, I fall into bed long after my sweet husband has slipped into his dreams and my girls have said their prayers.  I find a place of stillness and pray myself to sleep. 
   Mileigh is often that child whose second wind comes with a vengeance.  I've grown to love that about her.  It's a familiar place that I have just recently put my finger on.  We've called her "Sassafras" since she was small and I've always said she'd need that sassiness one day.  There are many nights that Mileigh crashes.  She goes until there is nothing left and she passes out.  You'd think that would be a peaceful and restful place but it's short lived.  She reminds me of an infant who has been over stimulated and become over tired.  The sleep is interrupted.  She cries out for me and I know all too well why.  She is too tired to fully rest, she is too tired to sleep soundly, and she is too tired to escape the aches of fatigue.  This, my friend, is Cyclic Neutropenia at it's finest.  This, is violation by genetics.
  Our natural instinct is to remove ourselves by any method possible in the event of being violated.  How do you remove yourself from your own body?  It's not possible.  It's a constant internal struggle and the end result is complete exhaustion.  I can't prevent these invasions.  I can't take away the feelings of being violated.  I couldn't for Joeli, I can't for Mileigh, and I can't for myself.  I can however deal with these invasions by structuring our lives, resting when we need rest, and being sensitive to what our bodies say we need. 
  I fully believe that one day there will be a final defeat for Neutropenia in all it's genetic forms.  It's important to share what we know, who we know, and what we live for this purpose.  Be heard.  Take action when your genetics begin their violation.  Listen to your bodies. 
  Thank you for supporting my family and I.  Thank you for sharing Joeli's Song!  Thank you for making her be heard.

A Heart Confused...

   How can a heart be so happy and full of joy and so broken and sad in the same moment?  How can you look into the eyes of the child(ren) looking back at you with hand made cards and split faced grins and still feel like shattered glass on the inside?  Many times I question what my heart feels and what's wrong with me...  I just want a Mother's Day or holiday free from confusion, free from hurt, free from wonder, just happy. 
   I hurt for my baby.  I'm happy and full of joy and thankful for Brelan and Mileigh.  I'm thankful for the three years and five months I was given with Joeli.  I'm proud of the mama that Joeli taught me how to be.  I wonder how other mothers who have been forced to say good-bye too soon "celebrate", for lack of a better word, this day.  I can not begin to fathom walking this life without my faith.  I find myself broken for those who choose to walk alone.  Then, I find myself in awe because I don't know how they do it.  I know with everything in me that without my Jesus they'd have buried me with my angel.  I'm not that strong, I'm not that good...I know the One who is though!
   I won't pretend that my life is "together" or even what it should be.  What's "should be" anyhow?  My faith isn't flawless and neither is my life but He is...  I have to keep reminding myself that He is.  He is, He is, He is!  At times it's hard to believe considering the path I've walked and am currently walking.  Something in this story has to be good but good for who?  Don't get me wrong, I'm honored to help others by being honest about this hurt, but where was a story when she needed one?  She deserved that too.  She deserved to be playing with her baby sisters on this Sunday afternoon in her Nannie's backyard while I watched from the swing under the pecan tree.  She deserved to have been with her Daddy picking out cards for me with Brelan and Mileigh. 
  Guess I got a little carried away with the word "deserved" huh?  As "Mama" I'm pretty quick to say what my girls deserve and in regard to Joeli passing I could even go as far as to say I'm a little quick to say what I deserved.  There my faith comes again.  Many say they hear that "still small voice"...not I!  He has to holler at me and often join it with quick SMACK due to me having a slight case of hard headedness!  Joeli is whole now.  No Cyclic Neutropenia, no pain, no effort to understand a sick world, she's perfect.  What exactly is it that we are all fighting for?  A cure right?  Maybe I should have specified the type of cure...there's a thought.  His ways are not always my ways and that's clear.  I didn't deserve Joeli or Brelan or Mileigh...they were gifts.  I'm trying to hard to keep that perspective today and not accuse Him of being an Indian giver.  I say that in a light hearted way...He didn't take her away.  He cured her.  She's waiting for me and will always be mine. 
  I might not be able to scoop her up and hug her tight today or for the last six years but no one can take the bond we have and developed long before I ever saw her sweet face.  This entire post may leave you confused....  that's appropriate huh?!  LOL....  Welcome to my life =)
  I am blessed in the midst of confusion.  I love you Joeli, Brelan, and Mileigh!  All Heart!

There's More Than Meets The Eye

   How often do we go about our day checking off things on our "to do" lists and still fail to get any further than the surface?  Sure, we include lots of detail and keep up with the day to day, but how often do we see clearly?  I get wrapped up in homework, softball, pigtails, is the laundry clean all day every day, and the list continues...  At times the overwhelming feelings of a new day with new tasks tend to cloud my view and often my purpose.  Of course, being a wife and mom includes millions of boxes to check off but it also demands that I feed the souls and personalities that I've been entrusted with. 
   Last week I had a conversation with my five year old, who also happens to be Cyclic.  For those of you who've spoken to a five year old for longer than thirty seconds you are quite aware that those conversations are often scattered and humorous.  In the beginning of this chat with Mileigh I automatically assumed that it'd be another one of those silly talks that appropriately reflected her outlook on life.  I was wrong on every level! 
   My two younger girls, Brelan (7) and Mileigh (5), have been handed more of this world's "blows", so to speak, than most adults.  They understand far more than they should about life, death, hurt, and faith.  That said, Mileigh came to me and wanted to talk about Joeli.  I've never kept anything away from them in regard to her.  In my opinion they'd never know her if I hid her memory away in my own heart.  Mileigh is very outspoken and hasn't developed a filter yet...not sure which parent she got that from but you know, HA!  Mileigh told me, very matter of fact, that she "missed Joeli".  This wasn't the first time I've heard this from her but something in her innocent voice struck me in a way that it never had before.
   I was at a loss.  I looked at this curly, blond haired, blue eyed little girl and did my best to not let her hear the strain in my voice.  I simply replied, "me too, baby, me too".  Mileigh's resemblance to Joeli is uncanny.  She quickly brought me back from my tears and said "No Mama, I REALLY miss Jo-Jo!".  What do you say to such a demanding and serious conversation from your five year old?!  I decided to let her talk.   Some may think that's the easy way to handle such a sensitive occurrence.  I disagree.  Have you ever listened, with your heart wide open, to a child who genuinely misses the sibling they never got to meet?  As a mother, my heart broke all over.  She began telling me about playing with Joeli in her dreams.  She told me that "Jo-Jo" was her "best friend".  As the tears began to pool and burn in my eyes it was all I could do to remain seated with heart and ears open.  I wanted to wrap all of this sweet innocence up in my arms and never let her know the feeling of absence again.  I couldn't.  I couldn't protect Joeli from that and I can't protect Brelan and Mileigh from that either. 
  The tears fell, searing my cheeks on the way down and I hugged Mileigh tight.  I whispered, because it was all I could manage, and told her that Joeli would always be with her no matter what.  I told her that Joeli would watch over her, love her, and be her best friend forever.  She was quick to say "I know, Mama...you have black stuff all over your face" LOL....  There it was, the scattered and comedic return of my Mileigh.  As quickly as that moment came, it left.  That's all she needed. 
   We, as parents, sometimes think that because they're small they don't see clearly.  They do.  Maybe clearer than we do.  There's more to Mileigh than blond curly hair, blue eyes, and sassy carefree mannerisms.  There's truth.  There's heart.  There's joy.  There's hurt.  There's a friendship with a big sister that she never got to meet.  You would never know.  I am in awe of the One who can give them what I can't.  I pray they always meet in their dreams.  Nothing is above Him... He orchestrates much more than we will ever be aware of, maybe even divine friendships.  This makes this mama's heart smile in a way I can't express.  Listen to your babies...you might learn something!  I did =)

"I wanna know a song can rise, from the ashes of a broken life..."

   
 
   Hey Y'all!  Please take a minute and listen to this song.  As I mentioned yesterday, lately I've just felt run down and just plain exhausted and emotional.  I chose this particular part of the lyric for the title because it really speaks to me.  Music is my language when I have no words.  I want that for "Joeli's Song"!  I want her song to rise and be heard and to make a difference in the Neutropenia world and in the lives of children and adults currently living with any form of Neutropenia.
  It's overwhelming to think about, truth be told.  I have lyrics for Joeli's physical "song" and I want them edited and put to beautiful music and I want to sing them.  I plan to do this with the help of a friend or two but the emotions involved in those lyrics take my breath.  Some of those lyrics I wrote days after she left my arms.  To go back to that place causes my chest to feel heavy, my heart to ache, my throat to burn, and my arms to physically hurt to this very day.
  I want to write!  I want to write things that I don't currently have words for!  I want her story to be heard so that it NEVER becomes the story of another soul affected by Neutropenia.  I want all of these words, thoughts, and ideas put on paper and in one place.  Can you see why I'm "worn"?! haha... 
  I'm pretty good at figuring things out... Monday I taught myself how to change the head on the weed eater and add line!  Three hours later my backyard was weed free and in the midst of it all it never occurred to me to wear pants in place of shorts!  Needless to say... I have now figured that out too, a few nicks and scratches later!  (You can laugh...I'm ok with that!).  I mention the "figuring things out" bit because you'd think I'd be fine when it came to editing my lyrics or seeking publishing opportunities for a book but for whatever reason I'm not.  I'm completely overwhelmed.  Maybe because I want it to be perfect and maybe because I'm slightly OCD!  Some of you who know me may disagree with my decision to use the word "slightly" LOL.  That's ok too...especially considering I have to approve your comments before they post =D. 
  All of this said, I often find myself worn.  I find myself on my face at His feet.  I find myself breathless from the constant struggle to keep on keeping on.  This is where music comes in for me.  When I'm in this worn condition, I'm often at a loss for words.  Imagine that!  Music and writing speaks to my soul in a way like no other.  At times I find myself singing right by myself and it feels so real I promise I hear her.  That may sound silly but to me it's just His way of saying "she's ok, Mama".  I have no doubt that it's her I hear...just as I have no doubt that it's Him I hear.  He is bigger than this world and anything it has to throw my way, death included! 
  Are you worn?  He hears...He knows...He holds and heals! 
I love y'all so much and I appreciate your encouragement after yesterday's post.  Please don't ever hesitate to comment or contact me in any way with your suggestions or questions.  It makes my heart smile when I hear from you!  Be Blessed!

Hall Pass

     Do you ever feel like you can't really catch your breath?  Like you just need a second to catch up...  Life for my family has been pretty hectic lately thanks to softball and celebrating the births of 2 of my sweet girls.  The last few days I've found myself missing Joeli so very much.  I don't have an explanation of why or a trigger that caused it...I just do. 
   I often wonder what she's doing, what she looks like, sounds like, and even smells like.  She MUST smell like Jesus.  I'd give anything just to be able to have a "hall pass" into Heaven.  Surely those aren't allowed because if we had them, we'd never leave.  It's times like these that I cling to what I know.  I cling to what I believe.  I don't always get it right... who am I kidding... I rarely get it right.  I'm drawn back time and time again because I know that I know that I know that He loves me.  I suppose maybe, in a sense, we do get a hall pass here and there.  Those brief moments when our faith shines thru and we don't struggle so hard to see.  The times when we blink and see clearly. 
   I saw a new Hemoc last week, speaking of clear moments.  It was refreshing to be heard for over an hour by a physician who didn't know me from Adam.  There was genuine interest and concern in that appointment.  I am cautiously excited and looking forward to my next appointment.  I feel somewhat scattered as I type.  I began this post thinking "I just need a minute to breathe" when in reality that's exactly what this was.  He shows up when I step back and let Him.
  I'm reminded as I look at the clock that it's almost time to go pick up Brelan and Mileigh from school.  I wonder if they need a hall pass too.  Maybe they just need to know that I'm proud of them and that they are good kids who's "best" is enough.  We get so wrapped up.  I miss my sassy Joeli but I'm quite sure some of these Divine appointments are scheduled with her assistance.  I smile when I think of possible conversations between God and Joeli.  They are tag teaming me =). 
  I've dreamt of her lately.  I just needed to see her.  That need drives me to His feet, a place where we all meet.  A hall pass... Maybe I just needed to look a little harder.  It was here the whole time. 
  I apologize for this scattered mess I call a post.  I'll take a pass today ;).  I truly appreciate your prayers and support.

That's just how I roll...

   Hi there!  Been a while.... I know, I know. Softball season is in full swing and both Brelan and Mileigh play.  I coach their team and play for my church team as well so to say we are a softball family is an understatement.  I've often been asked how I stay so active while living with two chronic illnesses.  Cyclic Neutropenia surely throws a kink in things from time to time and occasionally so does Fibromyalgia. 
   I remember when Joeli was little, and I'm not sure where or who she got this from, but she'd say "Dats how I roll" ha ha.  She was a character.  I felt like it made for a perfect post title.  As neutropenics, Mileigh and I live with a certain degree of pain on any given day.  My goal as a parent is to teach my children to persevere.  There are definitely times that rest is required.  There are times that we have to "take it easy"...  For the most part though pain is pain.  We can sit and hurt OR we can participate and hurt. 
  Fatigue comes with the neutropenic territory.  It also comes with the GCSF territory and the Fibromyalgia territory...well dang LOL!  I do have days where I just can't go but most days I just push through it.  I work out when I don't feel like it.  I play softball when I don't feel like it.  I take my girls skating when I don't feel like it.  Normally once I get out there in the middle of it all I'm fine.  The hardest part of working out is putting the tennis shoes on and the hardest part of eating right is ordering the healthier option.  Once you're on the elliptical or eating the grilled fish you're fine and you soon realize your body is thanking you.
   I've always been an "on the go" person, maybe that's in my genetic make up too... who knows.  I do struggle with soreness on a regular basis be it from work out routines or illness.  By the end of the day my bath tub is typically screaming my name and the hot water soaks truly help relax my body enough to sleep.  I see a chiropractor twice a week if schedules allow and that helps tremendously.  I also do massage therapy when I can arrange it but once a month would be ideal.  Insurance companies should really check this stuff out!  It's better than being medicated that's for sure.  I say that, about insurance companies, because mine doesn't cover massage therapy and minimal chiropractic care. 
   I don't want it to sound like my opinion is that you should push yourself too hard.  I do, however, think that for those of us who are affected by Neutropenia or any illness that takes our strength that we are required to evaluate ourselves more often than not.  Our bodies will gladly shut down.  I know, for me personally, I have to push my body to a degree otherwise I'd get stuck in some random pose and never move again.  Some days illness wins.  Most days, this is just how I roll!  Britt-1, Neutropenia-0! 
  We are not promised tomorrow.  I know that all too well.  I want to make today count.  If I push this body of mine to be healthy then I'm going to be "Mama" for a really long time and that makes my heart smile!  If I teach them to push their bodies to be healthy and active then one day they'll be "Mama" for a really long time too and I feel like I owe them that.  If I try to live right and seek His face even when I fail miserably they'll see.  More importantly, He'll see.  I want them to have the tools within themselves to do the same and who better to give that to them than their mama?! 
   Today my sweet Brelan turns 7!!  So I did all her chores and no homework on Wednesdays and no ball!  So this afternoon we take a break and celebrate Brelan!  She is often mistaken for "the oldest"... she knows she isn't.  She knows exactly who she is and who her big sister Joeli is and I couldn't be prouder.  I'm one blessed mama!  I've said it before but I say it again:  Joeli made me, Brelan saved me, and Mileigh sanctified me!  Be Blessed, y'all!
 

Look up

You looked up and our eyes met,
You looked up and I'll never forget.

The sparkle in your breathtaking eyes,
The first time I truly felt alive.

You looked up when you needed me,
You looked up and your hero became me.

I looked at you and my world was brand new,
I looked at you and saw more than I could do.

What perfect work He did,
He knew I needed such a spunky kid ;).

You looked up and taught me how,
How to look to Him right now.

Now I look up and see His Grace,
Amazing Grace and your sweet face.

I look often for glimpses of you,
He never fails to see them through.

I look at life and this world anew,
I look at your baby sisters and I see you.

I look up and accept His love,
He is surely true because you could only come from above.

My friend, look up...look into His face,
His love flows down in fields of Grace.

When it becomes clear that this is not our place,
Steady your pace and seek His face.

Look up!

Ulcers are from the Devil!!!

  If you or anyone that you love is affected by a form of Neutropenia, I'm quite sure you have complete understanding of the title of this post.  I remember when I was a kid and when my brother was a kid, pre GCSF, our counts would bottom and ulcers came running.  Running to our mouths straight from the pits of hell!  For those of you reading in support you may be thinking this is a little extreme...I assure you it isn't!
  What exactly is a neutropenic ulcer?  Its when our absolute neutrophil count drops to severely low levels and opens a window for bacteria to grow.  Bacteria levels in the mouth and any mucus membrane grow rampant when there's nothing to fight it ie: neutrophils.  Once the neutropenic body begins to wake up and get with the program new neutrophils rush to those areas of potential infection causing painful clusters of neutrophils.  Thus, an ulcer.  They're a double edged sword in my book.  The development of ulcers are a clear indication of the body's defense handling business but they are also a sign of potential intestinal ulcers due to the body being weakened by the drop in neutrophils for so long.  For those of us on GCSF mouth ulcers are a clear indication that our meds need to be adjusted.
   I have, personally, had mouth ulcers the size of a dime.  They leave devastation behind them.  The ulcer itself is painful and often makes even the smallest sip of water excruciating.  However, when the core of the ulcer releases, a hole is left to heal in its place.  It soon becomes a gaping wound that feels every movement and everything that's put into the mouth.  Once the core is gone its a matter of just a few days before all is well again but for those few days you wonder if you're mouth will ever be the same again.  You wonder if you'll ever be able to drink or eat again without fear of pain. 
    You may be wondering why I'm writing about something so random, or maybe you aren't, but at any rate.... I'm writing about this because in the last few weeks Mileigh, my youngest with Cyclic, has experienced mouth ulcers.  They haven't been huge but looks are deceiving.   We have used "miracle mouthwash" on a regular basis and she is now doing better.  Before this last bout I could count on two hands how many mouth ulcers she's had in her almost 5 years.  This tells me my sweet girl is growing and potentially needs more of the medication we inject daily.  I'm thankful for this medication but it terrifies the mama in me.  It scares me because no one truly knows how this medication will affect her in 50 years after daily use.  It scares me because of the adjustment process and the potential increase of bone pain.  It just scares me.  I know that its good and that it saves our lives on a daily basis but it does absolutely nothing for fear.
  Do you know what does do much for fear?!  Him!  His promises!  I don't have to fear this life or anything it has to throw my way because He is bigger than all of that! Thankfully He's bigger than my outspoken mouth too and He can handle it when I let Him him have it about whatever happens to be at hand. Yep!  That, right by itself, makes me smile!  Thank you so much for your support!  I know one precious girl who must be smiling down knowing that she is helping someone else!