Wednesday, October 19, 2016

Crazy, hard days!

Hey Yall!

So...I almost titled this post "crazy, hard neutro days" but after thinking about it for half a second, I figured we all had crazy, hard days and they are likely caused by various reasons that are all equally hard and just equally suck.  For those who follow Team JoMi and our blog, you know that I post at random and there's really no rhyme or reason to my madness ha! That's pretty accurate of the rest of our life too. Lately we've had a decent amount of added "junk" to our schedule.  Bone marrow biopsies, broken arms complete with orthopedic appointments, DEXA scans, neupogen dose increases, new school....the list could go on.

We all have full lives and full schedules for the most part.  Our family also does softball and we are big into that.  You may have seen pictures and posts etc from our annual Team JoMi Co-Ed Tournament on facebook. That was a great success and we have been so blessed by our softball family and surrounding community, family, and friends with that event. The funds raised by that event have provided ways to cover co-pays, fuel, food, services not covered by insurance, and countless other things that come up concerning Mileigh and neutropenia.

Yesterday was Mileigh's DEXA scan. For those who aren't aware, that is a simple xray like scan they do to test the bone density and is necessary because one of the side effects of continued neupogen use is osteoperosis. Mileigh and I both take calcium supplements to assist in offsetting that side effect. Those results usually come back in a few weeks. I don't expect any problems there but it's good to stay on top of it just in case.  There's always a "just in case" right?!  Anyhow, after checking the girls out of school a little early and grabbing coffee for the hour and twenty minute drive to her appointment, we were in and out in no time. We grabbed supper on the way home because both girls had softball games at the same time! Thankfully, their games were at our local park and not scheduled in one of our participating neighboring city parks. After rushing through supper and after school chores the girls got dressed for their games and we were off. Chad helps coach Mileigh's team and they were on opposite sides of the park so he was with Mileigh and I was with Brelan.  Brelan got her first hit since her cast removal and Mileigh was crushing the ball. After both having the late game we rush home to showers and teeth and meds and the normal routine and jump into bed. Here comes the "hard day" part...

My alarm went off promptly at 5:30 this morning and I promptly hit snooze ha!  As usual, I hit the girls lights and tell them it's time to get up and to please put some pep in their step because we can't afford to be late for school due to missing so much that is out of our control. I remind them both that we all have a job to do in order to have a good morning so please get up with good attitudes and start on making their beds and making their way to the living room where their clothes, shoes, and backpacks and purses are already laid out.  I stumble to the coffee pot and eyeball the one button that controls the fate of my morning. I proceed to the laundry room while listening to my liquid energy pour into my cup and here comes Mileigh.  Her eyes are red and the good attitude I'd previously asked for is no where to be found.  I ask what's wrong and her response is "Mama, I just hurt everywhere ya know?"...have I told yall that neutro gets on my nerves?!  If not, there....IT DOES!  I asked her to explain in to me because I needed to know if it was typical neutro pain or bone pain or something else because who knows really. She told me it wasn't bone pain but that she just felt ill all over and hot on the outside and normal on the inside.  I pressed her sweet bed head to my cheek and she wasn't feverish but had been cuddled in bed so I knew the feeling. I gave her motrin and her snack that I'd just packed and she was on her way to getting ready for school. I never heard another complaint. She knew she was achy and needed meds and got them and went on to push through to get ready to do "her job" in our home. Both girls finished getting ready and while I was brushing Mileigh's hair into her top knot and trying to tame her curls I couldn't help but be thankful. We've had a really hard last couple of weeks with discipline and attitudes and everything that comes with parenting and being 8 and 10 years old. Several nights I'd sat in tears because I felt like I'd failed them after an afternoon of yelling and arguing and feeling like that crazy mama who's head is certain to spin around one last time before it bursts into flames and she becomes an instant you tube sensation! I was thankful that I didn't feel like that this morning. I kind of got lost brushing her hair and just kept brushing till Brelan said "Mama, I think ya got it"...lol...that girl truly saves me! She has a sense of humor like Chad. Very passive and quiet but when she's not, it's usually pretty funny. I could tell the motrin had worked for Mileigh and we were ready to leave, ON TIME! Write that down! No fussin, no cussin, no bursting into flames...just ready to go. It made me thankful for the hard days because Lord knows if I didn't have them I don't know that I'd have found that profound thankfulness while brushing my 8 year old's kank bed head! That might not be "profound" for yall...it definitely was for me.

I know there is going to come a day when I don't have to set my alarm, I don't have to wake them, I don't have to drive them, and I no longer have to tame the kank. I know there will come a day when "crazy, hard days" are defined in an entirely different way. So, for now, I will revel in Brelan's quick wit and Mileigh's kank. I will soak up the days that I turn into Madusa and melt into a puddle at the end of it all because I got it all wrong and said all the wrong things to the little girls that I'm trying so desperately to teach to be good, contributing citizens.  My prayer is that when times change and they are older they will look back and know that I tried my best and wasn't too big to say I'm sorry when I screwed up and said it all wrong or bursted into flames. I want them to appreciate their "crazy, hard days" because they give way to thankfulness and understanding of days that go right and days that come without extra pain etc.

For now, they are super busy with school and piano and softball and church and everything and anything else that they do and as hard as it all is, I absolutely LOVE that I get to be the one to stand on the side lines and be their biggest fan! Do I think it's fair that my Mileigh gives her all just to wake up many mornings and hurt all over? HECK NO! It is what it is though and it's my job to teach her to not be defined by anything other than who God has made her and to roll with the punches and use it to make her a good person and a good friend and to love big!

Maybe this post was super random..I don't know and don't rightly care...it's where we are and even on this "crazy, hard day", I wouldn't have it any other way and I love it!

SINGLOUD
-says the Mama you may one day see on youtube with a spinning head in flames lol!


Saturday, August 27, 2016

I Have A Teenager!

   I feel like the new student walking into a class filled with returning students wondering who I am.... It's been a while, yeah?  There is no way for me to recap a full year into one post but I feel this post deserves it's own.  August 18, 2016 at 12:03pm my Joeli would've been 13 years old!  Are you kidding me right now?!  A mouthy, funky dressing, ornary...TEENAGER!  I feel slightly old now.
  We celebrated in our own way as we do every year. 13 balloons to release, new flowers for her marker, cookie cake with her angel and of course candles.  Dinner out and a foil balloon that stayed with her flowers.  I thought throughout the week what I'd be buying her if she were here and didn't have a marker that required fake flowers. I don't have a clue. 
  Brelan and Mileigh started a new school this year and Joeli's birthday was on a school day.  The ride to school that morning was awkwardly quiet and tearful.  How I wanted to give them what they wanted and what would make it better...her.  Brelan spoke of missing her and knowing that she was happy and healthy and in Heaven but how it wasn't fair because she just wanted to see her one more time.  What do you say?  All I could say was "me too, baby, me too".  I reassured them it was ok to cry and ok to miss her but we also had to be happy for her because she is where we ultimately long to be. They enjoy celebrating what should be and remembering their big sister.  There's always one balloon at the release that lags behind and without fail it happened again this year.  Maybe you can see in the pictures I'll add to the bottom of this post.  I didn't do much in the way of social media this year.  Some years are just different I suppose.  This one was. We were planning for the 2nd Annual Team JoMi Co-Ed Softball Tournament and maybe that kept my mind busy with the logistics that requires...who knows.  We had a dear friend from across the U.S. flying in and all to help celebrate a life that WAS and a life that will never be forgotten!
  Many of you, my social media family, remembered her too.  Many of you I've been blessed to meet and others I just feel like I have.  Most of you have never met Joeli Lynn and you live like you have.  You remember her birthday, you remember her life, you know who she was, and to you....she matters too!  Thank you! Please continue sharing her story and sharing our story. Please continue praying for our family as we live this life incomplete. #SINGLOUD #HAPPYBDAYJ13
  We love you and are blessed by you!










Tuesday, August 18, 2015

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!

Monday, July 6, 2015

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!

 

Sunday, June 21, 2015

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!!!