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!