Birthdays and life...

Happy 12 birthday sweet Joeli!!!! Hey everyone,  my name is Mandy, I am honored to be a guest blogger today. I don't really know where to start, so I'll start with her first birthday. I was working in Mobile for a few weeks at Toys R Us (I worked at TRU in Hattiesburg through college and the store in Mobile was changing locations so I volunteered to help) and it just happened to be around Joeli's birthday. I remember buying a giant Winnie the Pooh, well giant to a kid anyway ha and stopping by to see Britt, Joeli and Chad. She was beautiful and perfect, toddling around and jabbering like most one year olds would do...I don't remember exactly how she reacted to me showing up? However, I do remember wishing I lived closer and wishing I had been around more because this was the first time I met Joeli. I couldn't believe she was a year old and I was just meeting her. Britt and I had been best friends since her senior year in high school and my freshman year in college. We had a life BFF plan...were gonna be crazy neighbors and eventually crazy old ladies rocking on a porch together and breaking out of whatever nursing home our kids would put us in haha! Britt got married and I was still in college and our lives started to drift apart. We still talked and I remember many conversations with Joeli in the background talking, laughing, singing and most of the time she would just get the phone and talk to me or sing whatever was on the radio! She had the cutest country accent and was wise well beyond her years. At the end of our conversation she would usually tell me "peace out". It would always make me laugh and I knew she was going to grow up to be just like her momma. I didn't visit as often as I should have and I regret only making that one birthday .... The last time I saw Joeli was on August 5th 2006, she came to my wedding. Britt and her two girls and her aunt packed up and drove an hour and a half in a storm to come see me get married. I was in the bathroom when they all came in soaking wet... it was literally a monsoon on my wedding day, lightning, wind and buckets of rain (a bucket of rain means when you step outside in the rain it looks like someone poured a bucket of water on you) and I remember a quick hello and then we took a picture together at my reception - just me,britt and the girls. That was the last time I saw her.



I remember that heart wrenching phone call, I was at work and Britt called in tears and told me she was gone. My heart broke for her...I don't remember much of that conversation, I just remember crying and telling her I was sorry and then driving to Mobile.  It felt like it took forever for me to get there, I was going 80 or maybe even faster at times but it just seemed like the road was never ending. After that visit, that just seems like a blur, I vowed to do better... But I didn't, we made a few trips throughout the years and if I was passing through I would call and do lunch or swing by... But I wasn't a good friend. I didn't know how to be. Looking back I should have just hung around. Showed up. When someone loses a child their whole world is forever changed. Nothing will ever be the same. There is never a fix to the problem. It is just a forever hole that can't be filled. I never know the right things to say and for those that know me, I put my foot in my mouth often! But the older I get the more I realize that with anything in life we are just suppose to show up. You can't fix it, but you can be a shoulder to cry on, an ear to listen and a place to go. 

On Aug 18 this year Joeli would be 12.  This past weekend I drove over to hang out with Britt and the family and to just be around to do whatever she needed me to do to prep for Joeli's bday. We drove out to her marker one day to change the flowers and clean it. I had never cleaned a marker before. It was amazing to watch this momma have the strength to do this. To pull up at a cemetery with towels and a special solution to keep her marker clean. To watch her go in a flower shop and pick out an arrangement to place in her vase for her birthday. She should be planning her 12th birthday party and having talks about boys and starting middle school. Instead here she is, on her hands and knees cleaning the marker of her baby, holding back tears and weeding around the edges, wiping off dirt that blew over from another site, getting bit by the ants that seem to be everywhere and prepping everything so they can come back and release balloons on her birthday. How anyone has the strength to do that blows my mind. I am in awe of her. We sat for a while on the ground in silence once we were done. A million things ran through my mind but there was nothing to say. She broke the silence with stories and memories of being at the cemetery. I ended up taking a few pictures of her while we there and then we just sat and talked for a while until she was ready to go. If time ever sat still, I would say it sat still here...

I don't know what it's like to lose a child but I do know that she must have a strength out of this world to even be able to wake up each morning. Not to mention live a daily life with neutropenia and raise two more girls (one with neutro) and to do so with such grace and a fierceness like I've never seen. To live life every day wondering what life would be like if she was still here? Wondering what she would look like? Who her friends would be? What her interests would be? What would she sound like? What kind of relationship the girls would have? What it would be like to be complete? I never know the right things to say but I will say that this life she lives shows me Jesus daily. There is no other explanation... Nothing else could sustain her but the grace and mercy of our God. He alone is all we need and He alone is the only explination I know of that can give her this strength.

I don't know how to end this so I'm gonna leave it in your hands... You out there... For Joeli's 12th bday tell me some stories... If you knew her or know her momma... Share some fun stories to fill her heart... I think this is one of the best things anyone can do for a friend who has lost someone... just talk about them... and even talk about who you think they'd be...Happy birthday Joeli! 

For me, I think she would be a spunky 12 year old, testing out her own style (kind of like Maya on girl meets world) and probably begging for some bright colors in her hair. She would have an infectious laugh and sense of humor that would make her the hit of every social gathering. She'd be a killer ball player, a phenomenal singer and an amazing big sister. Solid in her faith and love of Jesus and bold in anything she believed in.  Most of all I believe without a doubt she would be her mommas best friend. Sing loud sweet girl! Happy birthday :) Me and my boys are gonna go EAT CAKE in your honor!

First Things First

  First things first...On this day 12 years ago at 12:03pm I became a mama. I became forever changed. Joeli Lynn Mothershead came into my life and made me who I am. She'd be 12 today. I will never forget the first time I laid eyes on her and she looked up at me and I sang to her. I was her hero. Period. Today her Daddy and sisters and I will release balloons, visit her resting place, and of course in typical Joeli fashion...EAT CAKE! She was definately the life of any and every party and I truly miss that about her. Who am I kidding...I miss every single thing about that beautiful soul.

  I titled this post "first things first" because it's been quite the summer with the NNN conference in Seattle, meeting with a "new to me" expert, follow up hemoc appointments for Mileigh and myself, and of course back to school. However, this is bigger. This is her day and I promise to get to that other stuff soon. Be sure to visit in the next few weeks for more info on all of that other "important" stuff. Today is Joeli's birthday!

  One of my best friends came this weekend. She came to help celebrate Joeli with me in whatever way she could. Recently I had a death in my family and that family member's resting place is very near to Joeli's. Due to the logistics of that, her marker has been very hard to keep clean. We went to a local flower shop and had arrangements custom made. We quietly made that drive...the one I remember so clearly. The one where all I could see was her pink casket in the car in front of me. That changes the way you view EVERYTHING. We went equipped with towels, water, cleaning solution, and of course flowers. I figured this way would be easier than having the excessive mess when we went as a family today. We spent quite a bit of time cleaning and arranging and then just sitting with her. I don't do that much anymore. I keep her marker clean and her flowers pretty but it's never been a place of peace for me. I say that because I know, as a believer, that she isn't there. Mandy didn't mind and encouraged taking my time. I laid with my little girl. Mandy also took photographs and I thought I'd feel weird about it but I didn't. I didn't speak...there's nothing to say. I gazed at the etched portrait of her on the hot black granite in the Alabama sun. Tears began to fall and as hard as I tried and prayed that they'd stay, they didn't. They stung my cheeks as I laid as close to her as I could. They fell and stained the clean granite beneath. I never imagined some of these photos and honestly they might be disturbing to some but I don't really care. That's my little girl and this is the life we've been given and I love that I have something to prove that she was here and she was mine and I can be close to her there.

  However, today, we EAT CAKE! Today, we send balloons to Heaven with little sisters who know no different. As their mama, I wonder how life would be different. I wonder who she'd be, what she'd like to do, what she'd sound like, if she'd have good grades or like softball...I wonder what kind of party she'd want and what gift she'd ask for. I'd like to know the struggle of school supply shopping with a preteen and then planning a party all in the same month. I wish I could take a "first day of school" picture with all three of my girls. Can you see the difficulty here? One of the happiest days of my life and I'm sending balloons into the clear blue sky. She deserved to live this life and be at her 12th birthday party and give this mama preteen attitude and go to middle school and all of that normal 12 year old stuff that, to be honest, I know absolutely NOTHING about...and I should!

  Now, the tears are steady and I can't help but change perspective here and see her in the lap of Jesus on her birthday. What a celebration! To say I'm jealous of Jesus is an understatement! She's perfect there. I don't know what she sounds like or what she would have wanted for her birthday but I know that she is perfect and she is nothing but happy. I don't know when I will see her again but I know that I WILL! I know that one day I'll walk through those pearly gates and I'll scoop my little girl up again and I'll spend eternity making up for lost time and hearing about her life there. Maybe I sound a little scattered...oh well. I likely won't walk through those gates either, I'll run. For those who know me personally, you know that's borderline humorous because I'm not running anywhere!

  I am trying hard to find the good things here. This is her birthday. This is the day that I was handed an angel that called me "Mama". I find myself with an internal struggle on these "celebration" days. I love that I know that my Jesus has my little girl and that she is healed and whole and happy but I desperately wanted to do life with her. I just wanted to be her mama for a real long time...right here in this place where I could put my arms around her. How do you walk into a flower shop and purchase an arrangement for you child's grave? How is that right? How do I take Brelan and Mileigh to their big sister's GRAVE for her BIRTHDAY?! I just do, because that's all I have and because this is the world we live in and it wasn't made to be fair. So, I teach them that we celebrate even when it's hard and we smile even when it hurts because she WAS here and she DID live and she IS their big sister! She is fighting and singing for every neutropenic baby out there. I have no doubt that she is with them when they are sick and that her song is being sung loud and clear and I AM SO SO PROUD of her! Happy Birthday, Joeli Lynn! Mama loves you ALL HEART!

 We love you, we miss you more than words, we can't wait to see and hug you, and untill then we will SING LOUD! Happy Birthday my beautiful girl! Thank you for making me who I am and loving me in every way that you can. Thank you for the relationships you have with Brelan and Mileigh even from His feet. I love that about you! I miss you more than words. See ya on the flip side!

  To those of you who've stuck this post out this far...thank you! For those who couldn't, I understand. I value your encouragement and comments. I love how yall love her. I love how yall support this broken hearted mama. I promise to update on the rest of our summer soon...but today...EAT CAKE! (and if you want to EAT CAKE in Joeli fashion...make it chocolate!) **SMILE** and PEACE OUT!

Has June Come and Gone Already?!

    Well, well, well... Seems like this summer is ending just as fast as it started. We had a great May with school ending in all A's for both girls and both girls making Allstars for their local softball league. Team JoMi has had great success with fundraising to assist with our neutro related medical bills and the coming conference in Seattle. The first Team JoMi softball tourney was a success and we are so blessed to be a part of a community who loves their players and prays for their players. The month of June brought with it a war...a sepsis war. 

  For many of you, you might ask what a "sepsis war" might be. For others, the 6 letter word sends ice through your veins because you know the fight it demands. Most of you know by now that as well as Joeli and Mileigh, I am congenital cyclic too. My counts dropped as usual but this time is wasn't the normal fatigue and general ill feeling till my marrow responded. I knew something was off. I went to my hemoc and confirmed that my anc was indeed zero. My hemoc is one of the most compassionate physicians I've ever known or been treated by. I was instructed to come back if fever developed and hit neutro protocol. The next night fever came and I knew something wasn't right so my best friend took me in. I alerted my hemoc and he called ahead to prepare the ER for me. They were phenomenal with their care and interest in what I had. They'd never heard of it before and were all about learning. They treated my pain, ran labs, cultures and took all necessary precautions to keep me safe from outside sources of infection. I was ultimately admitted and given empirical IV antibiotics to fight potential gram negative and gram positive bacterias in my blood. The antibiotics ran while we waited for culture growth. Come to find out there was a gram positive bacteria there.
 
    My best friends were at my side and many were praying and helping with the girls. Our church family went above and beyond anything I've ever experienced and we are so blessed by them. This admission included several really painful nights, countless blown veins, blood draws, and neutro explanations to those who'd never seen anyone like me. I'm thankful for friends who take such interest in what affects my daily life and what took my Joeli's life. It's a very surreal feeling to lay in a hospital bed and watch medication run into my veins that she was denied.  Medication that would have saved my Joeli was now being given to me. That entire scenario leaves me speechless. 

   One of my friends took pictures of this admission. Many say that neutro doesn't have a face or a look. I disagree. Maybe you will too after I post a few of those. As a grown woman, wife, and mother I can honestly say I don't know how my sweet girl endured that pain for the amount of time that she did with nothing to relieve it and nothing to heal the rapidly spreading bacteria. Folks, sepsis is no joke. It will take your life. It DID take hers. I don't know what God's plan for me is but I know it isn't done yet because I'm still here. Eventually my marrow did respond with the help of those antibiotics and my neutrophils returned. It took a while to feel normal again but I think I'm getting there. Whatever "normal" is right? ha!

   Thankfully I had a full week to recover before taking the girls to GA camp. I went with another friend from church and we took 6 girls. They had a blast and so did we. I think those girls taught us way more than we taught them.

   Now...I am 10 days away from my flight to Seattle to attend the National Neutropenia Network's Family Conference where the experts attend and any new information is given. This is also an opportunity for fellow neutro mamas to meet or reconnect. A safe zone, if you will. Where neutro is common place and everyone's fridge is filled with neupogen. Where people get that tylenol doesn't touch our pain and neutro does have a look. I look forward to meeting more of these precious mamas and reconnecting with those who are now my neutro family. Last year I took the girls so they could attend the kids camp but this year it's just too far so I'm going with a friend and we plan to make the best of our time across the U.S. from home. We have a mutual friend there and plan to visit with her too. I'll be bringing back any and all information for my hemoc and hope he is able to attend next year.

  If you have a minute, I'd greatly appreciate you sharing the blog and/or our gofundme page www.gofundme.com/teamjomi Moreso than the sharing, please pray for us...pray for me as I travel in the next 10 days, pray that infection stays away and pray that our marrow response is quick. Pray for Brelan (our non neutro)...for understanding and for time with mama when she needs me. Pray for Chad and I, that we balance our relationship with each other and our girls and teach them what they need to know and how to love big and to SING LOUD!

  Thank y'all so much for reading, for commenting, for encouraging, for sharing, for praying...there's no way I could take this approach and perspective without that.  Be Blessed and SING LOUD! I look forward to hearing from y'all and to meeting some of you in Seattle!

 

1st Annual Team JoMi Tournament Success!!!

 Long time, no post huh? It's been quite a while I know. May 22nd our first ever Team JoMi Tourney went off without a hitch and was truly amazing and a blessing to our family. We had a total of ten co-ed teams and I was just in awe of the support from people who didn't know us from Adam. Camelia Trophy Shop donated an amazing trophy for the winning team and Team JoMi had tshirts printed for the winning team and also to sell for those who wanted them. Thanks to David Bowen Sporting Goods for doing those for us! I will add photos at the end of this post. I still have tshirts available if any of you are interested for 15.00 and our original Team JoMi tshirts are 20.00.
  It was important to us to have the girls at the tournament but we knew it'd go into the morning hours with ten teams. That said, I put down the seats in the back of my truck and turned into a bed for the girls and parked it close to our tshirt table. Around 11pm I made them lay down and rest and the championship game started at 3am. You heard right haha...3am. Softball is serious down here especially when it's for a good cause! Half way through the championship game we woke the girls and got the trophy and tshirts ready to present and Brelan and Mileigh were able to give the trophy to the winning team. That was really important for me. Mileigh, our neutro, is very familiar with life with neutropenia and knew the importance of this tourney and what it would mean for our family in sending me to Seattle next month for the Neutropenia Family Conference. Brelan, while she isn't neutro, she knows neutro! She is the glue that holds this neutro family together at times. I am constantly blown away by her maturity and willingness to support no matter what it calls for.
  The Diamond Elites won the first ever Team JoMi Tourney and we were so blessed by every single team who took time out of their weekend to come help support our family. We were able to raise approx 1000.00 towards getting me to Seattle and also to assist with Mileigh's medical bills and I was truly humbled. I can't wait till next year. I hope to make this tourney an annual occurance. I am thankful to be a part of a Softball Family who loves us and our girls and who goes the extra mile when one of their own is in need. I know that our sweet Joeli was smiling down and so proud of her song being sung and people being introduced to neutropenia.  #singloud We are blessed by you!!! 

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!