Time...

   Hi there!  My posts seem to come fewer and fewer lately.  It's certainly not on purpose.  Time seems to get away from me some days especially lately.  The anxiety that comes with holidays and missing loved ones tends to take over here and there.  January 18th was 7 years that Joeli has been with my Jesus.  At times it seems like just yesterday I was scooping my little girl up and wrapping my arms around her and other times it seems like 100 years since I heard her sweet voice and smelled her hair.  It's difficult to explain how in the same breath it feels like yesterday and then so long ago too. 
   Last year at this time I was launching this blog for the first time.  I have been amazed at the response.  It's because of you that people hear Joeli sing.  It's because of you that I find encouragement.  I know how hard it is to be on your side and how often you fear saying the wrong thing.  I have found strength here.  Your comments, your stories, even your struggles that you share with me have brought me to this place in time.  Thank you. 
      So often we hear that time heals all wounds.  I'll say that's a bold faced lie.  I've lost  many that have been close to me including a parent.  Time often dulls the ache and creates a new normal but it doesn't "heal".   7 years later and the death of Joeli, my first born, is just as searing today as it was on Jan. 18, 2007.  I can't replace those memories or that hurt.  Time has given way to awareness.  It has provided situations and circumstances for me to share her and to help others.  It has given me perspectives I never wanted to know.  It has also stolen from me that which I'll never get back.  Oh, how I miss my baby.  I know she wouldn't be a baby anymore...she'd be my 10 year old 5th grader but time took that from me.
  Time, along with the cruelty of this world, have taken much.  However, there are things it can never take.  It will never take away my security in scooping her up at His Feet on that glorious day that I walk thru His gates.  It will never take the closeness that I have with her to this very day.  It will not touch the bond she has with her baby sisters and it will not take her song.  She won't be silenced for as long as there is breath in me. 
  Late last week my family battled illness and while resting MiBeth came to me.  She came with a familiar randomness, that defines her, and said "Mama, I wish Joeli could walk me to class".  I questioned my own ears and said "what, baby?".  She knew exactly what she'd said and repeated to me "Mama, I wish Joeli could walk me to class but she can't.".  With big alligator tears she waited for my response.  How do you respond to that?!  I swallowed, hard, and said "My sweet girl, your friends might not see your big sister with you but I promise you she is with you always.  She walks with you every day just like Jesus does and don't ever believe any different".  She, being 5, was satisfied with my answer and simply said "ok, Mama".  There are times that I wish I was satisfied with His answers for me.  He tells me and I know that He knows better than me.  He tells me that His timing is perfect.  He tells me that all things work together to glorify Him.  I know all of these things and I do believe them.  Often,  it's hard to find comfort in these things when He's the One who holds my little girl.  I have to remember that in His time I will be healed...so maybe time does heal.  Just not in the way we define.  I believe this is true.  It leaves me clinging to a verse that I learned a long time ago but have recently found new meaning in. 
     "Now faith is being sure of what we hope for and certain of what we do not see."
                                                                   -Hebrews 11:1
Be Blessed!

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!