Team JoMi Tournament

  May 22nd is THE day!!!!  Our girls play for a local ballpark and the park president, his wife, board, and families have been so supportive of our family and our awareness for Neutropenia research. I was floored when the president came to me months ago and wanted to put on a tournament that would raise money to assist with getting me to Seattle for the coming Neutropenia conference and for some of Mileigh's medical expenses. The day is almost here! The tourney tshirts have been designed and will be printing soon and the squishy balls have been delivered. If you are local and want to play, all you need is a team of 5 men and 5 women and it's 150.00 entry fee. It's one pitch and a Friday night that is sure to be full of laughs and lots of fun. If you don't have enough for a team, I'm positive we can fit you in on another one if you'd like to participate.
 
  If you aren't local but would still like to support and be a part of this Team JoMi event, you can contact me and order a tourney tshirt or visit us at www.gofundme.com/teamjomi

 I've been truly humbled and just blessed this spring ball season and I, personally, cannot wait to see this all come to be. There will be lots of pictures and I'm sure lots of tears by this mama. I don't have pictures of the tourney shirts just yet but will post when I do.

 Until then, thank yall so much for your prayers, thoughts, comments, support, and encouragement in this fight for a cure! #SINGLOUD

Mother's Day and Such...

 Hey Yall! Seems like this year is flying by and getting the best of me at times. I know it's been a while so I wanted, or should I say "needed", to sit a while and update. I think blogging is more theraputic for me than anything else at times, aside from music. My neutropenic brother's first baby, Tanner, was born last month and he is precious. I breathe him in every chance I get because to me babies smell like Heaven and I imagine that's what Joeli smells like now. I am positive she sent a kiss with him.

 Recently, we've been attending a new church and I've started singing again on mic...write that down! It's been a while but I think it's been good for me to know that even in my mess He can still use me. I can't tell you the last "Mother's Day" that I was seated in a church till this year. Not only was I seated but I sang....and yep, I cried too. People don't want to hear about the mother who buried her baby too soon. There aren't awards for those mamas. To be honest, often there aren't even words for those mamas. Most would just assume smile their Sunday smile and say "happy mother's day" in passing and go on about their day, their life. I wish it was that simple. My mother's day weekend was filled with softball and neutropenia. Both girls played in a local tournament and Mileigh's team played for the championship and won after 12 hours at the ball park. She was so excited! In the midst of the championship game, neutropenia reared it's ugly head and her bones began to hurt. She was in visible pain on the field. As I sat in the bleachers and watched my baby girl's face wince each time she stepped with joint pain, all I could do was fight back the tears and pray. A coach took her some meds out onto the field but that would take time and the game must go on. I didn't have to tell her to be strong. She already was. She continued her game...she hit, she ran, and she scored thru acute joint pain due to marrow response. By the end of the game the medicine had taken affect and she was feeling better. That day, her team won and Neutro LOST!

 In the closing ceremonies where they award each girl with a medal and the team with a trophy, all the mamas were out on the field with our cameras ready to capture those sweaty and smiling little girls get their medals. Towards the end a coach spoke up and awarded Mileigh with the trophy because she'd played thru the pain and showed such great dedication to her team and her game. The dam broke and the tears fell. All I could do was cry with pride for my little girl and appreciation for a softball family that loves my girls. Brelan joined me and held me as I attempted pictures thru blurred vision. She was really proud of her baby sister too. One of Mileigh's teammates that day had an older sister as well...born just days before Joeli in the same year. I wonder if she knew that when I looked at her I wondered if my J would look like that too. Mileigh carried that trophy with such pride...so much so that we took it to church the next day and she showed it to her grandparents after church. She was, and still is, really proud of that huge trophy. Thank you, SGS Softball, for loving my girls!

 I struggled thru church on Sunday. I struggled to hear, I struggled to sing, and I struggled with my own emotions as I listened to the sermon about God blessing Hannah with a son after years of praying and years of being infertile. I wondered why God would answer my cries for a baby then take her away. I wondered why those mamas were never talked about. I wondered what she'd look like and what she'd want to wear. I wondered what her handwriting would look like on the homemade card she didn't get to make. I wondered what a picture would look like with me and all three of my girls. I still wonder. I wonder if family and friends know how much it hurts when they choose to not speak her name. She is still my little girl. I know it's not easy to know what to say when you're on that side of things but believe me, when you're on this side something is always better than nothing. When nothing is said it's like being cut to the core because it's as if, to them, she were never here. She was most certainly here...and still is. I know that Joeli is so proud of the way Brelan sticks up for Mileigh and for me. I know that she smiles when Mileigh pushes through and doesn't let neutro win. I know that she is with some of your babies in the er, hospital rooms, and labs. I know that she is with mamas I've never had the opportunity to meet quietly telling them that she's fighting for them and that they're doing the right thing. I know that she sings...she SINGS LOUD!

 All in all, mother's day was as good as it could have been given the circumstances for me. I felt my J in my heart, I had Brelan and Mileigh in my arms, and that's all I could want. I breathed Tanner in and looked at his mama and my brother in a different way. Now they know what Heaven smells like too.

  I know this post has been somewhat all over the place but I hope that you were able to hang in there with me. I will post some pictures at the end. Be Blessed and SING LOUD! We'd love to hear from you!

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!