Friday, August 30, 2013

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!

Friday, August 23, 2013

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!

Sunday, August 18, 2013

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 :)

Wednesday, August 14, 2013

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...

Saturday, August 10, 2013

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!

Thursday, August 1, 2013

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