Team JoMi, Update, Redeemed...etc...

   Since Mileigh's admission last month we have certainly hit the ground running! We are a family who loves softball and spring has definitely sprung! Opening day was this Saturday and both Brelan and Mileigh did great on their teams. Mileigh even won the homerun derby for her age division! How cool is that?! Our park president and his wife, who also coaches Brelan's team, have been so supportive of Team JoMi. They offered for us to have a booth where we could have various raffles, information on Neutropenia, and tshirts available to sell. We did ok with tshirt sales but have several on hand that need to move. This softball family has definitely come together for our girls. David Bowen is a locally owned sporting good store here and participates in helping with awareness for Team JoMi. They print our tshirts and also gave us an item to raffle. "Thank you" would never be enough!

   Friday night Brelan's team participated in a sister city's opening day and during that game our park president came to me with a date and information for a co-ed tournament to benefit Team JoMi. I couldn't contain myself from hugging this man who has so graciously put effort into my family! I was and still am floored. During a time when life and illness take over our world, it means so much to have support from the folks right here around us.

  We are currently drowning in medical bills from my admission and Mileigh's most recent admission and somehow God is truly showing out! This is where the "redeemed" part of this post title comes in for me. Many of you know from following my blog or just knowing me that we are a "churched" family. Our girls attend the church where we are currently members. However, for the last year or so our attendance has been sporadic at best. No excuses here...I let life get in the way.

   For the last month the girls and I have been attending a smaller church closer to home. While we adore the church we've called home since 2009, things have changed. My health has changed and the size alone became overwhelming for us to attend during the times that Chad couldn't be with us. As you probably know, when you get out of routine with something it's easy for it to fall by the way side. Church did. I have had a tough couple of years in every aspect of my life and some of it I didn't handle so graciously. I royally screwed up across the board I think. I'm honored to serve a God who is bigger than any screw up I happen to create! I think...even though I wasn't "studying" or "looking" He was showing me what "redeemed" really means. I didn't even know it! Funny how that works sometimes. Do I wish I'd handled some things differently? Of course...relationships, words, choices, etc... I'm far from where I need to be but it's reassuring for sure to see Him so clearly even in small glimpses. My anxiety is high much of the time so to think of putting myself in a situation to meet new folks at a new church and to try to restore and "redeem" some of what's been weighing me down is extremely overwhelming. I've been blessed with some of the best friends I could ever ask for, who believed I was worth it anyhow, even when I wasn't.

   A couple of weekends ago I attended a ladies retreat with one of my best friends in another state and I was asked to sing. Do you know how long it's been since I sang in a mic?! It, to me, was God saying "see, I don't NEED you, I WANT you"! I honestly didn't think I was even usable anymore. I felt like I'd disgraced Him so much that He'd never want me again. I came away from that time with a renewed and "redeemed" assurance that He is bigger than anything I've done or can do to screw up and that He DOES want me. Again, we've been visiting a smaller church closer to home and since being there I've been so encouraged. That may sound cheesy but it's really huge to me. Please pray that we find our place there. Pray that I can allow Him to restore that which I've let go.

  This post has kind of been all over the place...sorry. That is a pretty accurate description of our life lately..."all over the place".  Thank you for hanging in there with us and for supporting us anyway. Our latest fundraiser ends this Saturday, March 28th and we are far from our goal.  It's through Booster and we set a goal of 75 tshirts. We are currently at 27. If you would consider checking that out, sharing it with your friends and family, and maybe even purchasing one for yourself we'd really appreciate it. The site is www.booster.com/teamjomi

  I suppose I'll stop rambling for now. Please keep us in your prayers and know that I pray for you too. I am truly thankful for grace and for the blessing of redemption even when I screw up so often. He is BIGGER! #SINGLOUD

Are We Still In 2015?!

   Hey Yall!! Oh My Word!! Are we even still in 2015 because I'm just about done with January and Feburuary to be honest! Thankfully we are now healthy! After getting through one of the hardest days of the year for this Neutropenic mama in January...8 years my Joeli has been with Jesus, MiBeth came down with croup and influenza A during a drop.  We ended up rushing her to our local children's hospital more than an hour away from our hemoc due to her being respiratory distress.  Her ANC was ZERO...yeah you read that correct! 
   As Congenital Cyclics its nothing out of the norm to hit ZERO. We hit it every 2 weeks no matter the dose of neupogen.  However, we don't always have infection.  Do you ever just feel done? You don't have to be affected by chronic illness of any kind to get there. It's often just a place you hit. Well I've been there for some time now and I'm fighting with everything left in me to get away from it. After stabilizing her breathing and being admitted into a negative pressure reverse isolation room, I sat and watched every breath this beautiful angel took. They suggested I rest while she did...ARE YOU KIDDING ME RIGHT NOW?! Is that even possible after you've seen your little girl gasping for every breath and telling you "I'm dyin, mama"? Not for me. I laid wrapped around her counting every breath and watching her sweet chest rise and fall. It was almost rhythmic. It soothed me to watch but not to listen. It was ragged and struggled. You could hear the air flowing between her vocal chords and hear the sound as she struggled to speak.
   I cannot begin to tell you what it feels like to have one ripped from your arms forever...did you hear me?  FOREVER!  Then to have another tell you they are dying.  NO!  I refuse!  I will not make it through that again and I am NOT saying good bye again!  I don't know His plan for me or for my family but I know He knows what I can handle and He knows I cannot make it through that again.
   She slowly began to improve but not without a fight. Her marrow stayed at zero but the steroids and breathing treatments were helping her breathe. She hated those breathing treatments even though she desperately needed one. I don't recall which night but at one point a respiratory therapist came in and he was a big guy. She began to protest. She didn't want the mask on her head, near her face, or that "junk blowing in her nose". She could care less that the mask looked like a small pink dragon that blew smoke. She was not amused. That was a night straight from the pits of hell to be frank. Some of you may know this scenario all too well. Others, I hope you don't. Do you know what it feels like to hold your little one down by their chest with one hand and hold their head in place with the other?!  While I did this, the respiratory therapist held her arms and legs using more than just his arm and we forced her to inhale the medication her lungs so desperately needed. The tears flowed and splattered on her chest as she looked at me with eyes begging for me to stop, begging for me to let her up, begging to just be well.
   It's MY job to make sure she's well, to make sure she does what's required to be healthy. To some, this scenario may sound like just a brat but you have to understand. Mileigh will hold her tiny arm out for blood to be drawn, she will watch an IM injection be done full of steroids and never flinch, she will explain neutropenia to a health care professional better than they can but that night, she was done. This is where our age difference and the fact that I am Mama and she is mine mattered not!  Two people, two neutropenics, two hearts who live with hurt and do not understand...at that moment she met me at the bottom and we were two DONE FOLKS! Differences aside, I knew right where my little girl was and I couldn't blame her one bit.
   Do you know your directional options from the bottom? There's just one. UP!  She shows me that all the time and this time was no different. She began to respond, she began to heal, her eyes began to shine again. I knew her Joeli met with her in her dreams. I knew that Joeli was there and I know that no matter what, even when we are done, we are loved. I am in awe of the people who have shown their care and concern for our family. I am overwhelmed. We love yall! More than you will ever know. Please take a moment and share our blog. Share our go fund me www.gofundme.com/teamjomi . We are blessed by you! SING LOUD!

An Angel Day

  An angel day is on its way, it wasn't supposed to be this way.

  You had your whole life to live, oh what I wouldn't give.

  Nearly eight years has come and passed, I just want to hear you laugh .

  The pain doesn't change each breaking day, I just get better at hiding this way.

  They miss you too you know, they loved you so much JoJo.

  I miss so much what never was, the three of you together just because.

  There's a new special day coming soon, a special day to honor you.

  You sing loud my Joeli Lynn, the grave did not and will not win!

  You fight for me each time I'm down, you fight for us all without a sound.

  I hear you in the silence of it all, I'm so very proud of your song.

  Keep singing my sweet girl, I'll make sure you're always heard.

  Come see me in my dreams I pray, I need to hold you for today.

  I love you Joeli Lynn, all heart! This world will never keep us apart.

Thankfulness Vs. Selfishness

  Hey Y'all, if you follow Joeli's Song at all you know I haven't posted in some time. I have typed hundreds of words and thought of hundreds more only to delete. One thing I've always strove to do was to find the silver lining in the life I've been given. I want you to find hope and inspiration here. Truth is, hope and inspiration is often found in the most hurtful places. It's harder to see there and even harder to believe. I'm saying this almost as a warning because I don't feel hopeful and I sure don't feel inspirational either. I feel compelled to write anyhow. I feel compelled to let you see even though for months I've tried to protect, even you, from my world, my hurt, and my words. So, with that said, let's talk about Thankfulness Vs. Selfishness.

 I suppose it comes at a good time, with us just on the other side of Thanksgiving...He seems to do that a lot with me. I'd like to pose some questions. Were you thankful as a child? Did you realize what you didn't have? Did you appreciate relationships you were given? Were you thankful for that first thrilling and terrifying moment that you looked your soon to be husband and/or wife eye to eye at the other end of that aisle that seemed to stretch for miles? Did you cry with joy or fear when you saw those two pink lines? Let's stop here.

 We spent our Thanksgiving Holiday in the mountains of Tennessee. I dream of living there. I'm thankful for a place that allows me to breathe a little easier for some unknown reason. I thought I'd do fine. I was away from our home, with immediate and some extended family, and had a jam packed itinerary of things to do with our girls. I've been seeing a therapist almost weekly, given medication to help with anxiety, advice for coping, and just in general preparing myself for this time of year. My current hemoc is fairly new to me but has taken my care and treatment seriously and more than just my body. He has been phenomenal in caring for the emotional effects of chronic illness and has truly shown his passion for what he does. So, in my type A fashion, I was more than prepared for Thanksgiving. NOT.

 In reference to the questions I asked earlier in this post. All I ever wanted was to be a mama. I was thankful for my husband and for the simple life we started. I didn't want fancy. Never have. Nothing wrong with fancy but you know. More importantly, to me, I WAS THANKFUL FOR THOSE TWO PINK LINES!!!!! I was told pregnancy, if even possible, would most likely be a challenge for me. I WANTED MY BABY. Come to find out...I wanted ALL of my babies. I had four pregnancies..Joeli, an angel we lost at ten weeks, Brelan, and Mileigh. Every one was planned and prayed for. Every one was wanted. I cannot for the life of me understand how women are blessed with healthy babies that they never planned or wanted and some even abused. How is that justified?! Why do they get to keep their babies and why do they get to go about life not giving a damn when that sweet child looks at them and sees a hero instead of the sorry pieces of trash that they are?!  Call me selfish, I don't care.

 I don't have SCN, I'm not severely neutropenic all the time.  I am Cyclic and only down for parts of the month.  Joeli was the same way.  Mileigh is that way. Should I be thankful for that?! I'll be 32 next week and for 32 years my body has been on a never ending roller coaster of constant highs and lows that wreak havoc. I hurt EVERY DAY. Add to that, that I've now buried my little girl and I hurt in a way that has no words! I look into the eyes of a healthy eight year old Brelan and wonder what her life will be like later because she has a sick mama and a sick sister and because she has to understand that her big sister DIED! I look at Mileigh and hope and pray for a cure in time for her. Mileigh has done so well and hasn't had serious infections in so long. I suppose that's where I should say I'm thankful. Why can't I be thankful for normal stuff like chicken pox and crap...nope...let's be thankful for neutrophils and no pseudomonas. I'm sorry, but WHAT?!

This pain makes me want to run away but where the heck do you run? Will it be different anywhere else? NO! It won't and it won't change. My heart will break every day for the rest of my life. Every morning that my lungs fill with air her's do not. Every morning that I fix them breakfast and pack their lunches and praise their good grades and kiss their bobos I can't do any of that for her. EVER! I AM NOT THANKFUL FOR THAT CRAP! I want to fix her hair, I want to kiss her good morning and good night, I want to fight with her over her outfit, I WANTED MY BABY! I wanted to watch her grow up and teach her how to live, how to love, how to cook, how to be a good mama, and I wanted to hold her for longer than three years and five months to the day. She was mine. She is mine and I can't even touch her.

I don't mind fighting to raise awareness, I didn't mind before. Why must I fight for everyone else's child when no one fought for mine?

I think I'm done. I don't even know how to end a post like this other than to say kiss your babies, hold them while you can, play with them while you can, because one day they may slip right from your hands.

Selfishly I'll ask you to pray for this broken heart of mine.

Sing Loud, Joeli Lynn...until I see you again!

Forsaken Much?

  Long time, no post huh?!  Our lives have been slightly nuts recently with Chad traveling half way around the world, the girls' school and softball activities, and throw in a neutropenic admission for me and things get real fun! Schedules are finally back to our normal and the ebb and flow of our lives have resumed. Chad is back to work, homework and softball rule our night lives, and my veins are slowly recovering from the empirical iv antibiotics required for fever and an ANC of zero. 
 
  I've had some time to think lately as my body required me to slow down in order to heal. During that admission there were several very painful times when I felt "forsaken"... Have you ever felt that way? Just thrown to the wolves and hope ya make it out alright? I have recently, due to several different types of situations, found myself feeling that way. It's not even in my beliefs to be forsaken! How does this happen? As I laid in my hospital bed with my ninth iv placed and connected to life saving medication that my Joeli was denied, the feeling of being forsaken took hold in my soul. I couldn't even pray to ask why. It didn't matter that I couldn't pray. He heard my heart and He reminded me in so many ways that HE WILL NEVER FORSAKE ME!

                   "Be strong and courageous. Do not fear or be in dread of them, for it is the Lord
                         your God who goes with you. He will not leave you or FORSAKE you."
                                                                                    ~Deuteronomy 31:6

    I wish that I were better at living His word. Sometimes it seems my errors are too big. They're not. I know I mess up a ton but I also know somehow or another I'll get to the other side of all of this. You will too. He will never just be ok with us walking the other way. Funny how life and all it's curve balls happen and there's still that something that sends you reeling back, back to what you know at the core of who you are.

   There are so many neutroheros fighting right now. Fighting for life, for wellness, for tomorrow and some just fighting for today. I'm positive that even in my struggles there are so many with so much more and yet I found myself feeling forsaken and alone. I know that somewhere there is a cure for Neutropenia. I know that even when I feel forsaken, He is bigger! He is big enough to handle whatever I feel and whatever we have to throw at Him. Sometimes, it's hard to reach out, ask for help, or just admit we need the help when it's offered. It's hard to trust in a world that finds humor in pain. Truth can't be shaken...it may be hard to see for a time but it's there. We are not forsaken!  SING LOUD!

When A Little Heart Breaks

  Hey there.  I'm just gonna jump right in on this one.  My sweet Brelan has been dealt enough in her short eight years.  She was forced to say good bye to the only big sister she had before she was even capable of understanding what that meant.  She was thrown into the role of big sister when Mileigh came along.  She's had to take a back seat often simply because she's healthy and Mileigh isn't.  She's been given way more than an eight year old should have been, in my opinion.  I have to believe that this is just part of God's plan in shaping her and molding her into exactly who she needs to be.  Sometimes I wish that process wasn't so hard especially when they are so young.

   This last week has proven to be pretty tough on my girl.  As a mama, I'm supposed to fix it.  I'm supposed to ease her aching heart and make things better.  Some things, I just can't.  I wish I could.  This world, this life, these circumstances aren't fair.  I'm not raising little girls to believe that we live in a world that is fair, because it isn't.  Life happens.  Being the big sister of a neutropenic has played a pivotal part in who Brelan is.  She is very knowledgeable about neutropenia and has a huge heart for those affected by it in any form.  She truly cares.

   I've watched my sweet baby grow into a beautiful little girl who cares about people.  Maybe I have neutropenia to thank for that.  It's odd to take that perspective when neutropenia has taken so much from me.  I am compelled to find good.  Good in the one thing that was meant to destroy my family.  My Brelan is teaching me that.  Sometimes I am at a loss...a loss for words, a loss as to what I need to do, just lost.  I'm thankful for tiny hearts that are resiliant and that love so big.  No matter what neutropenia has taken from my family, no matter how it's changed our course in life, and no matter what the future holds for us I know that I have been so blessed to be called "Mama" by three of the most precious little girls this world has every seen!

   My heart aches when hers breaks.  I find myself crumpled at His feet and begging for the right answers.  Teach me to teach her the right way.  This morning I was driving home from car line and found myself begging for God to hold her heart today when I cannot.  Tears scortched my face and fell to my lap as I begged for Him to just give peace.  I believe that He will because He never fails.  I steer her to Him when my words fail.  I have to believe that she will grow in Him and that peace will come when nothing else seems to soothe.
  Pray for your little hearts...please pray for Brelan and Mileigh's too.  We are truly thankful for you!  Sing Loud!

He REALLY hears!

  Hey y'all! I have some crazy exciting news...I've been humbled to tears. When everything in life seems to be going to hell in a hand basket here He comes.  I am so, so glad that He loves even me.  I have done nothing, especially lately, to truly seek His face. Much of that comes from just being mad to be honest. As many of you know, our girls attend a private, faith based school that also happens to be our current church home. It has been a blessing when dealing with the neutropenia and school aspects. This year is very different for all involved in Brelan and Mileigh's education. Mileigh started first grade...did I just say that out loud?! Wow... Anyway, first grade means no naps.  It also means, crap just got real!
 
  I wasn't quite sure how to go about everything that neutropenia entails with these changes aside from what we already had in place.  We do chronic illness letters, pull them both if illness presents in their peers, provide clorox wipes and hand soap, etc...  So far, things have gone very smooth and communication has been above par from their teachers and school staff.  I spoke with their headmaster shortly before school started because I wanted his opinion on how to go about these changes for both of them but especially for Mileigh.  He was aware that we'd been to the family conference this summer and I filled him in on that trip as well as Mileigh's recent bone marrow biopsy.  Part of that conversation led to us discussing Team JoMi tshirts.  That tshirt fundraiser is what made that conference possible for my girls and I.  He asked for a flier with info on them.  We continued the conversation about Mileigh and where to go from here and decided a meeting with all staff involved would be appropriate.

  Last week after school one day we had that meeting.  Mileigh's teacher, Brelan's teacher, P.E. Coach, and Headmaster all in one room with one purpose...to keep Mileigh safe. In preperation for this meeting I thought I'd be intimidated...I wasn't.  He heard there too! We gathered in Mileigh's classroom and there things became surreal.  Here I was telling these people, who care about my little girls, about neutropenia!  IMAGINE THAT! For so long, I've just wanted someone, anyone to just hear.  Just hear what this is and how this affects our lives and how maybe just by knowing changes can happen. I have no doubt in my mind that those teachers and staff were divinely placed in my life and in the life of my girls. They listened to everything I had to say, even the hard parts. They asked questions on how they could help and even made suggestions. Essentially, our situation has now created a situation for them and some might say a more complicated one at that. They didn't seem to mind. They just cared. That's all we've wanted from the start.

  I know you're wanting to hear the exciting news...I'm getting there! In this meeting Joeli was obviously discussed. Joeli's Song was heard. She is taking care of her baby sisters in a way that I cannot. I am so proud of my little girl! It was nearing the end of our meeting and the headmaster began to speak. He'd taken that Team JoMi flier before the board of education for our school. You see, each month our school focuses on one mission.  October is breast cancer awareness, November is a food drive, December is metro ministries, etc...you get the idea.  They teach our kids to love across the board.  The headmaster and I had not discussed specifics on Joeli's death but many of you are aware that she left my arms in January of 2007.  Guess what January is for my girls' school?!  TEAM JOMI month!  You heard me...it's true...my girl is being heard and it's all because of people like you!  So...in preps for January each student will receive a newsletter in December with this blog address and information.  In January students will be given the opportunity to order Team JoMi tshirts for themselves and also given the opportunity to wear them in awareness for my Joeli, my Brelan, my Mileigh and for everyone affected by any form of neutropenia.  How about that for God huh?!  I am in awe of the work that He continues to do with even a mess like me. 

  I am so thankful for the folks that have been strategically placed in the lives of my girls and in my life. He REALLY hears...even when we think He doesn't.  So often I don't have the words and the words I do have fail but I believe He understands my heart even when it's not in the best of places.

  I don't know why you're here, on this page, reading these words.  I don't know if you have neutropenia or if you love a neutropenic.  I don't know much but I know this...He loves you and He loves me and we don't deserve it but oh to see!  Thank you for all you do.  Thank you for supporting me in whatever way you can.  Thank you for raising awareness and for helping this mama make a song heard that others meant to silence.  He hears, He is able, and He is bigger!  Be Blessed!  Sing Loud!