tag:blogger.com,1999:blog-24390415283616494282024-03-14T04:49:12.780-07:00Joeli's SongWhere her voice is heard and Cyclic Neutropenia is more than a word.Britthttp://www.blogger.com/profile/07642661028627141916noreply@blogger.comBlogger78125tag:blogger.com,1999:blog-2439041528361649428.post-42079535019491214262017-05-08T09:23:00.002-07:002017-05-08T11:18:34.431-07:00Anticipation... <span style="font-family: "arial" , "helvetica" , sans-serif;">Hey y'all! Seems like it's been too long...maybe it has. Life has been incredibly busy and taxing but beautiful too, if that all can be in one run on sentence. We've celebrated, we've had hard conversations, we've had tears and misunderstandings, we've had so much softball LOL. All to say, we've been here, living life and making memories and mama just didn't get it together to write it all down like I once did. Funny now that I'm staring at this blank page through blurred tears, the words seem to pour out of me faster than I can type. It's therapy really. I miss seeing it all in black and white...it's borderline validating along with your feedback and comments and thoughts and prayers. I've missed that. We've had admissions...not many and nothing crazy serious. We've had crap days with crap neutrophil counts. We've had amazing days with beautiful people and feel good days with appropriate neutrophil counts. I can't promise that this post will even make much sense....if you've gotten this far, thanks for hanging in there.</span><br>
<span style="font-family: "arial";"> This weekend we celebrated Brelan and Mileigh turning 11 and 9. Their birthdays are actually in March and April but softball came first. They don't always choose to celebrate by having a traditional birthday party because they love to travel almost as much as their mama, if that's possible. Often we will do a weekend trip or whatever and that's their "party". This year was at a trampoline park. For those that are neutro family, I cringe too...but it's our life right? You plan the party, you give the shot, you sanitize, you change clothes and you move on. I love celebrating my girls. All of them. On their actual birthday days we did do small things so the anticipation has been building for some time now. Mileigh was first in March and chose a day of shopping and good food...that's a girl after my own heart. Brelan chose a make up day at Merle Norman that the weather put on hold but we decided on a sweet friend, good food, and a movie. Funny how as we sat at each dinner there was an unsaid and unexplained empty chair. You know where I'm going here. She should be here. She should be celebrating with her sisters for their birthdays and planning to celebrate this weekend for mother's day and then bombarding me with whatever it is that an almost 14 year old wants to do for their upcoming birthday. I should know what that's like. We should be preparing for high school and driving permits and dealing with braces and zits and periods and everything else...I should already know about all of this. I know that she would take pride in celebrating her sisters and her mama and her daddy and those who loved her so very much. I know how big she'd love because she loved me that big. I can only imagine that Jesus sent her here to teach me just that. How to love so big. How to love in such a way that when you go people say "that must be what Jesus smells like". Maybe that phrase doesn't make sense to some of you. I am one of those people who have a thing about smells...I've always sniffed my babies up and still do. I notice how people smell...not in a weird way but just in a "them" way. People smell like their lives, their homes, their clothing, just them. I think back on times when I'd sit and hold Joeli and sniff her sweet head and I imagine that's what Jesus smells like. I hope one day I can leave folks with a tangible sense of Jesus regardless of which one it is.</span><br>
<span style="font-family: "arial";"> This post is starting to feel a bit rambled...sorry. Again, it's been way too long. I don't care for the anticipation of holidays and birthdays. I'd rather just wake up on that day, smile because we are here or have been here, and move on. I adore Joeli, Brelan, and Mileigh and I adore celebrating them and am honored to be their mama. I will never have the words to describe an upcoming mother's day with 2 of my 3 girls at my side. NEVER. It's not natural, it's not ok, it's not happy, and it shouldn't be. We live in a fallen world where hurt and tragedy are far too real. I don't get it all right and I don't say the right things probably more times than not but I know who holds my baby and I know who holds us all. He will fight my fights and He will do so without me having to say a word. I think of 2 different places in the bible when I think of these things. I'll post them below and then I'll probably go...</span><br>
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<span style="font-family: "arial";"> "For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope. Then you will call upon me and come and pray to me, and I will hear you. You will seek me and find me, when you seek me with all your heart. I will be found by you declares the Lord, and I will restore your fortunes and gather you from all the nations and all the places where I have driven you, declares the Lord, and I will bring you back to the place from which I sent you into exile." ~Jeremiah 29:11-14</span><br>
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<span style="font-family: "arial";"> "The Lord will fight for you, and you have only to be silent." ~Exodus 14:14</span><br>
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<span style="font-family: "arial";">Honestly...I don't think there's anything left to say. He will bring me back and He fights for me. He can and will do the same for you. I hope your Mother's Days are filled with joy even if that comes without a smile, closed wings, broken halos, cried out amens, or arms and laps overfilled. Love Big! Be so close to Him, that we walk away and smell like Him! I pray through all my failures that this thread rings loud and clear to my sweet girls.</span><br>
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<span style="font-family: "arial";">Joeli made me, Brelan saved me, Mileigh sanctified me! Be blessed and #SINGLOUD</span><br>
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<span style="font-family: "arial";">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.</span><br>
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<span style="font-family: "arial";">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.</span><br>
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<span style="font-family: "arial";">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...</span><br>
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<span style="font-family: "arial";">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.</span><br>
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<span style="font-family: "arial";">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. </span><br>
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<span style="font-family: "arial";">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!</span><br>
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<span style="font-family: "arial";">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!</span><br>
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<span style="font-family: "arial";">SINGLOUD</span><br>
<span style="font-family: "arial";">-says the Mama you may one day see on youtube with a spinning head in flames lol!</span><br>
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</span><br>Britthttp://www.blogger.com/profile/07642661028627141916noreply@blogger.com0tag:blogger.com,1999:blog-2439041528361649428.post-50136463943424561282016-08-27T16:46:00.000-07:002016-08-27T16:46:04.070-07:00I Have A Teenager!<span style="font-family: "arial" , "helvetica" , sans-serif;"> 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. </span><br />
<span style="font-family: "arial";"> 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. </span><br />
<span style="font-family: "arial";"> 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!</span><br />
<span style="font-family: "arial";"> 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</span><br />
<span style="font-family: "arial";"> We love you and are blessed by you!</span><br />
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Britthttp://www.blogger.com/profile/07642661028627141916noreply@blogger.com1tag:blogger.com,1999:blog-2439041528361649428.post-87971396886952478982015-08-18T19:44:00.000-07:002015-08-18T19:44:08.041-07:00Birthdays and life...<span style="line-height: normal;">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.</span><br />
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<span style="line-height: normal;">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. </span><br />
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<span style="line-height: normal;">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...</span><br />
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<span style="line-height: normal;">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. </span><br />
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<span style="line-height: normal;">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! </span><br />
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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!<br />
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<br />Britthttp://www.blogger.com/profile/07642661028627141916noreply@blogger.com0tag:blogger.com,1999:blog-2439041528361649428.post-10184436662725383802015-08-18T19:19:00.000-07:002015-08-18T19:51:20.712-07:00First Things First<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"> 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.</span><br />
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<span style="font-family: arial;"> 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!</span><br />
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<span style="font-family: arial;"> 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. </span><br />
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<span style="font-family: arial;"> 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!</span><br />
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<span style="font-family: arial;"> 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!</span><br />
<span style="font-family: arial;"></span><br />
<span style="font-family: arial;"> 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! </span><br />
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<span style="font-family: arial;"> 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!</span><br />
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<span style="font-family: arial;"> 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! </span><br />
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Britthttp://www.blogger.com/profile/07642661028627141916noreply@blogger.com3tag:blogger.com,1999:blog-2439041528361649428.post-5895510984894922532015-07-06T19:05:00.001-07:002015-07-06T19:25:32.337-07:00Has June Come and Gone Already?!<span style="font-family: Arial, Helvetica, sans-serif;"> 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. </span><br />
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<span style="font-family: arial;"> 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. </span><br />
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<span style="font-family: arial;"> 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. </span><br />
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<span style="font-family: arial;"> 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! </span><br />
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<span style="font-family: arial;"> 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.</span><br />
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<span style="font-family: arial;"> 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.</span><br />
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<span style="font-family: arial;"> If you have a minute, I'd greatly appreciate you sharing the blog and/or our gofundme page <a href="http://www.gofundme.com/teamjomi">www.gofundme.com/teamjomi</a> 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!</span><br />
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<span style="font-family: arial;"> 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!</span><br />
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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.</span><br />
<span style="font-family: Verdana;"> 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.</span><br />
<span style="font-family: Verdana;"> 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!!! </span><div class="separator" style="clear: both; text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzEyl0PRWtF0FDrd3eF2rlOqYlLl5YPTltrLiuelCybw1z-QZyf1hIkZdYOE-v_64LI4AgC-rWKn8OLQdmDeBI2npokKXtp437D56zgA49VQpGecxZi0nEdZADAMeuRMR4YQCFi4ZrEj9t/s1600/p20150523-111804.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzEyl0PRWtF0FDrd3eF2rlOqYlLl5YPTltrLiuelCybw1z-QZyf1hIkZdYOE-v_64LI4AgC-rWKn8OLQdmDeBI2npokKXtp437D56zgA49VQpGecxZi0nEdZADAMeuRMR4YQCFi4ZrEj9t/s640/p20150523-111804.jpg"> </a> </div><div class="separator" style="clear: both; text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhABTVI6pnneJSXotM0TkkvR1T9zxKjsevd_zXFqrKGfgONfO7Z1HT6lc2gzl8s_OojpLcxKTBx28VE3nunUe3DxJsaMuZcSq2rGQ4GeqTZMl-bSoSVbN0iJ3JWCIL1I0vOzlLoyHLV5oqn/s1600/p20150523-040218.jpg" imageanchor="1" style="margin-left: 1em; 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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.</span><br />
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<span style="font-family: arial;"> 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 <a href="http://www.gofundme.com/teamjomi">www.gofundme.com/teamjomi</a> </span><br />
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<span style="font-family: arial;"> 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.</span><br />
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<span style="font-family: arial;"> Until then, thank yall so much for your prayers, thoughts, comments, support, and encouragement in this fight for a cure! #SINGLOUD</span><br />
<div class="separator" style="clear: both; text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEher0485DvuMTgUj0r_kjJLZCyjhYFZPggD5R_oUQ2lIZkjPGIUgRYn9aJfKHzBCyIL53nYtF0FcpN8IP4u_s8stwd8d4ZQVg6G2U7jtpce1_afONQNbltON9nMTUK6aQx_DG9eiVPwmki4/s1600/Team_Jo_Mi_-_Neutropenia_awareness_A.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEher0485DvuMTgUj0r_kjJLZCyjhYFZPggD5R_oUQ2lIZkjPGIUgRYn9aJfKHzBCyIL53nYtF0FcpN8IP4u_s8stwd8d4ZQVg6G2U7jtpce1_afONQNbltON9nMTUK6aQx_DG9eiVPwmki4/s640/Team_Jo_Mi_-_Neutropenia_awareness_A.jpg"> </a> </div><div class="separator" style="clear: both; text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyJJ7OqneBsEEO7DcHf7sRlo1IhXgk67xOCOF659dxJw6CLHOU33GEKTp1obSG_m7nHSnPliAPPfMjmrcgdKjGdunP2ogda1855-uFfMajf4UwG3OPTkHbywqYFbRbkwjesQUj9yJlCAvS/s1600/Team_Jo_Mi_-_Neutropenia_awareness_B.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyJJ7OqneBsEEO7DcHf7sRlo1IhXgk67xOCOF659dxJw6CLHOU33GEKTp1obSG_m7nHSnPliAPPfMjmrcgdKjGdunP2ogda1855-uFfMajf4UwG3OPTkHbywqYFbRbkwjesQUj9yJlCAvS/s640/Team_Jo_Mi_-_Neutropenia_awareness_B.jpeg"> </a> </div>Britthttp://www.blogger.com/profile/07642661028627141916noreply@blogger.com1tag:blogger.com,1999:blog-2439041528361649428.post-51584270266140721112015-05-12T08:04:00.000-07:002015-05-12T08:05:10.003-07:00Mother's Day and Such...<span style="font-family: Arial, Helvetica, sans-serif;"> 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.</span><br />
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<span style="font-family: arial;"> 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!</span><br />
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<span style="font-family: arial;"> 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!</span><br />
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<span style="font-family: arial;"> 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!</span><br />
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<span style="font-family: arial;"> 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. </span><br />
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<span style="font-family: arial;"> 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!</span><br />
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<span style="font-family: arial;"> 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! </span><br />
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<span style="font-family: arial;"> 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.</span><br />
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<span style="font-family: arial;"> 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.</span><br />
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<span style="font-family: arial;"> 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.</span><br />
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<span style="font-family: arial;"> 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. </span><br />
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<span style="font-family: arial;"> 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 <a href="http://www.booster.com/teamjomi">www.booster.com/teamjomi</a> </span><br />
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<span style="font-family: arial;"> 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 </span><div class="separator" style="clear: both; text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPtnz17d1nZ8piy7Q5ftkotv0RQdkrDG6zfopSzAorSatRmvtyHsjnlZVvDNJsMi5miAxPgmsSAuBcdtCn0MQkLUizih0YjzMydM9UyMZRsGsU4m_Zhp_5fD4h1CvvllAxDpaDsrGJVi3R/s1600/p20150321-150856.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPtnz17d1nZ8piy7Q5ftkotv0RQdkrDG6zfopSzAorSatRmvtyHsjnlZVvDNJsMi5miAxPgmsSAuBcdtCn0MQkLUizih0YjzMydM9UyMZRsGsU4m_Zhp_5fD4h1CvvllAxDpaDsrGJVi3R/s640/p20150321-150856.jpg"> </a> </div><div class="separator" style="clear: both; text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhiZ9prXF7U_x6ektO5E4PgvIrSWP3ZDvA86VKc1pyxdLX3qpLoK9kWrcyfhbk6ZkANTt1F8gu66VDhL3eqNJJS_jTfgo-F3hbB19EzqXq7zbiF2iv0CcTDFnoKZIqU5eRV_O48mq3dBVK/s1600/p20150321-151718.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhiZ9prXF7U_x6ektO5E4PgvIrSWP3ZDvA86VKc1pyxdLX3qpLoK9kWrcyfhbk6ZkANTt1F8gu66VDhL3eqNJJS_jTfgo-F3hbB19EzqXq7zbiF2iv0CcTDFnoKZIqU5eRV_O48mq3dBVK/s640/p20150321-151718.jpg"> </a> </div>Britthttp://www.blogger.com/profile/07642661028627141916noreply@blogger.com2tag:blogger.com,1999:blog-2439041528361649428.post-59985551718794857262015-02-22T11:28:00.000-08:002015-02-22T12:18:50.118-08:00Are We Still In 2015?!<span style="font-family: Arial, Helvetica, sans-serif;"> 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! </span><br>
<span style="font-family: Arial;"> 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.</span><br>
<span style="font-family: Arial;"> 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. </span><br>
<span style="font-family: Arial;"> 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. </span><br>
<span style="font-family: Arial;"> 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. </span><br>
<span style="font-family: Arial;"> 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 <a href="http://www.gofundme.com/teamjomi">www.gofundme.com/teamjomi</a> . We are blessed by you! SING LOUD!</span><div class="separator" style="clear: both; text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRFkHMjbB75ulmQsJm8pdCmSJijkp9TxUiHkbkD0TJBDNDfFg219v2u_U56fkak-Kq_cogwk-nLnnFQb_JL_Ie5L34dd6Rv-v27lzrhB8-yaaKbgUf_IvjMeAbUBzZNJn2mT4xABaOpckz/s1600/p20150213-085624.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRFkHMjbB75ulmQsJm8pdCmSJijkp9TxUiHkbkD0TJBDNDfFg219v2u_U56fkak-Kq_cogwk-nLnnFQb_JL_Ie5L34dd6Rv-v27lzrhB8-yaaKbgUf_IvjMeAbUBzZNJn2mT4xABaOpckz/s640/p20150213-085624.jpg"> </a> </div><div class="separator" style="clear: both; text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdj_U5GglgUSwXBgzoh7CdjlJaHLmX3TXe5eCNr1B9XMWTMpirjxI8LXVCYhDgKa6XZ6ohesZVioS7WQSwvc4dt9pTl3HJcqzoEPaTsJ1Fz4zn7hkBe69EMnJQlt52K1wNJ0FcqvlEpQA4/s1600/p20150214-111242.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdj_U5GglgUSwXBgzoh7CdjlJaHLmX3TXe5eCNr1B9XMWTMpirjxI8LXVCYhDgKa6XZ6ohesZVioS7WQSwvc4dt9pTl3HJcqzoEPaTsJ1Fz4zn7hkBe69EMnJQlt52K1wNJ0FcqvlEpQA4/s640/p20150214-111242.jpg"> </a> </div><div class="separator" style="clear: both; text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpF__Nkvz3JdgzvFVpeZ4CSG1Xvu9TPbnn4jdjxW_ChSHlsgv5qDhE9zQ0WyQX-eBxdCjKXN-uCt6_bYGaAOWOqvqxBSYC3B4eGyXMMFEG2plAEO6LPV0jKSvWzzQx5ju3IRk3TeRDFd5p/s1600/p20150220-152210.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpF__Nkvz3JdgzvFVpeZ4CSG1Xvu9TPbnn4jdjxW_ChSHlsgv5qDhE9zQ0WyQX-eBxdCjKXN-uCt6_bYGaAOWOqvqxBSYC3B4eGyXMMFEG2plAEO6LPV0jKSvWzzQx5ju3IRk3TeRDFd5p/s640/p20150220-152210.jpg"> </a> </div>Britthttp://www.blogger.com/profile/07642661028627141916noreply@blogger.com1tag:blogger.com,1999:blog-2439041528361649428.post-27396967191069863372015-01-14T22:15:00.001-08:002015-01-14T22:29:18.517-08:00An Angel Day <p dir="ltr"> An angel day is on its way, it wasn't supposed to be this way.</p>
<p dir="ltr"> You had your whole life to live, oh what I wouldn't give. </p>
<p dir="ltr"> Nearly eight years has come and passed, I just want to hear you laugh .</p>
<p dir="ltr"> The pain doesn't change each breaking day, I just get better at hiding this way. </p>
<p dir="ltr"> They miss you too you know, they loved you so much JoJo.</p>
<p dir="ltr"> I miss so much what never was, the three of you together just because. </p>
<p dir="ltr"> There's a new special day coming soon, a special day to honor you. </p>
<p dir="ltr"> You sing loud my Joeli Lynn, the grave did not and will not win! </p>
<p dir="ltr"> You fight for me each time I'm down, you fight for us all without a sound. </p>
<p dir="ltr"> I hear you in the silence of it all, I'm so very proud of your song. </p>
<p dir="ltr"> Keep singing my sweet girl, I'll make sure you're always heard.</p>
<p dir="ltr"> Come see me in my dreams I pray, I need to hold you for today. </p>
<p dir="ltr"> I love you Joeli Lynn, all heart! This world will never keep us apart. </p>
Britthttp://www.blogger.com/profile/07642661028627141916noreply@blogger.com0tag:blogger.com,1999:blog-2439041528361649428.post-13797079940473328912014-12-06T19:32:00.000-08:002014-12-08T12:32:58.581-08:00Thankfulness Vs. Selfishness<span style="font-family: Arial, Helvetica, sans-serif;"> 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.</span><br>
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<span style="font-family: arial;"> 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.</span><br>
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<span style="font-family: arial;"> 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.</span><br>
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<span style="font-family: arial;"> 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.</span><br>
<span style="font-family: arial;"></span><br>
<span style="font-family: arial;"> 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?! </span><br>
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<span style="font-family: arial;">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.</span><br>
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<span style="font-family: arial;">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?</span><br>
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<span style="font-family: arial;">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. </span><br>
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<span style="font-family: arial;">Selfishly I'll ask you to pray for this broken heart of mine.</span><br>
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<span style="font-family: arial;">Sing Loud, Joeli Lynn...until I see you again!</span>Britthttp://www.blogger.com/profile/07642661028627141916noreply@blogger.com0tag:blogger.com,1999:blog-2439041528361649428.post-38767203011659961632014-10-02T09:54:00.000-07:002014-10-02T09:54:11.820-07:00Forsaken Much?<span style="font-family: Arial, Helvetica, sans-serif;"> 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. </span><br />
<span style="font-family: arial;"> </span><br />
<span style="font-family: arial;"> 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!</span><br />
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<span style="font-family: arial;"> "Be strong and courageous. Do not fear or be in dread of them, for it is the Lord</span><br />
<span style="font-family: arial;"> your God who goes with you. He will not leave you or FORSAKE you."</span><br />
<span style="font-family: arial;"> ~Deuteronomy 31:6</span><br />
<span style="font-family: arial;"></span><br />
<span style="font-family: arial;"> 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.</span><br />
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<span style="font-family: arial;"> 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!</span><br />
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Britthttp://www.blogger.com/profile/07642661028627141916noreply@blogger.com0tag:blogger.com,1999:blog-2439041528361649428.post-27506269270827089132014-09-08T08:45:00.000-07:002014-09-08T08:45:29.697-07:00When A Little Heart Breaks<span style="font-family: Arial, Helvetica, sans-serif;"> 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.</span><br />
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<span style="font-family: arial;"> 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.</span><br />
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<span style="font-family: arial;"> 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!</span><br />
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<span style="font-family: arial;"> 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.</span><br />
<span style="font-family: arial;"> Pray for your little hearts...please pray for Brelan and Mileigh's too. We are truly thankful for you! Sing Loud!</span>Britthttp://www.blogger.com/profile/07642661028627141916noreply@blogger.com0tag:blogger.com,1999:blog-2439041528361649428.post-68230094472593526712014-09-02T10:57:00.001-07:002014-09-04T08:43:18.838-07:00He REALLY hears!<span style="font-family: Arial, Helvetica, sans-serif;"> 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!</span><br>
<span style="font-family: arial;"> </span><br>
<span style="font-family: arial;"> 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.</span><br>
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<span style="font-family: arial;"> 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.</span><br>
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<span style="font-family: arial;"> 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. </span><br>
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<span style="font-family: arial;"> 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.</span><br>
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<span style="font-family: arial;"> 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!</span>Britthttp://www.blogger.com/profile/07642661028627141916noreply@blogger.com1tag:blogger.com,1999:blog-2439041528361649428.post-57879732543052197172014-08-21T08:08:00.001-07:002014-08-21T08:08:39.484-07:00Loss Unspeakable...<span style="font-family: Arial, Helvetica, sans-serif;"> Mornin'...I'd say "good" but it isn't. You know, most days I try and usually succeed at choosing a positive perspective on life. Today isn't one of those days. Today hurts. It's one of those things you just wake up with sometimes. I didn't decide to have a bad day...they're forced it seems. I made sure Brelan and Mileigh had a good morning and got them off to school. As much as I wanted to just crawl back into bed, I tied my tennis shoes in prep for the gym. After good bye kisses and "have a good days" were exchanged my truck seemed to be in auto pilot. I put my truck in park and grabbed my headphones. I couldn't hear what was going on in the gym around me but I found myself staring at the t.v. that I couldn't hear. Somewhere and about something I read the words "loss unspeakable". Ironic much?! Soon my 30 minutes was up on the elliptical and I made my way back to my truck. Funny how these days come complete with silence even from those who have no clue. Not one person spoke. Neither did I. </span><br />
<span style="font-family: arial;"> </span><br />
<span style="font-family: arial;"> I turned the engine and for no reason at all fought back tears...tears with no explanation and no trigger. Again, in auto pilot, I drove. I found myself at her resting place. Joeli would've started 5th grade this year...her last year of elementary school. That's a pretty big deal. I sat and stared blankly at the beautiful black granite stone with her precious face forever etched into it's smooth finish. It reminded me of how my girls are forever etched into who I am, into every fiber of my being. I began to think about those familiar words..."loss unspeakable". I have lost much in my life. Nothing can compare. Period. I've lost a parent, grandparents, even friends but nothing quite like this. This is like losing your soul. There are no words for this loss. </span><br />
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<span style="font-family: arial;"> If you've followed my blog for any time at all you have probably read at some point that I try to not view Joeli's death as "loss" because I have no doubt where she is. While that's true, some days feel very different. Today it's loss and it's loss unspeakable. I don't understand the world in which we live! I want an explanation and I WANT TO BE HER MAMA!!!!! I want to be her mama here, in this life, on this earth, and in MY arms! I miss my little girl! I miss what should have been and I'm flat out pissed that life was taken from her. I have heard it time and time again that "everything happens for a reason"....I'M CALLIN BULL CRAP! There was absolutely no reason for her death...NONE! Joeli should be here with her mama, her daddy, her baby sisters, her family, and all the friends she never got to meet. </span><br />
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<span style="font-family: arial;"> I feel like a singer who's been thrown onto a football field...LOST and completely out of place. Sheer panic. How do I parent a child who isn't here?! That doesn't even make sense! Everyone goes about daily life and while I do take steps forward and go about life in order to give Brelan and Mileigh "normal" and healthy and happy and good and all of those things...my life remains in the screeching halt of January 18th 2007 when Joeli was ripped from me. I WANTED MY BABY GIRL! I wanted to show her life and teach her to love and to grow. I don't care who you are or what degree you obtain or what credentials you posses it is not and will never be "natural" to live this life on this earth without your child. </span><br />
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<span style="font-family: arial;"> I love you all heart, Joeli Lynn!!! You will forever be where I begin. </span><br />
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<span style="font-family: arial;"> Sing Loud.</span>Britthttp://www.blogger.com/profile/07642661028627141916noreply@blogger.com1tag:blogger.com,1999:blog-2439041528361649428.post-32329772337829067532014-08-19T07:29:00.002-07:002014-08-19T07:34:15.398-07:00Celebrations Don't Always Go As Planned... <span style="font-family: Arial, Helvetica, sans-serif;">Be still my heart! Since the launch of Joeli's Song (blog) and my increased involvement with social networking regarding neutropenia, I have been welcomed into a community of folks who have truly blown me away. Yesterday certainly called for celebration as Joeli turned 11 with her Jesus in Heaven. I woke in a fog with a broken heart but managed to get Brelan and Mileigh to school before returning home to crawl back into bed with my tears. I decided I'd log onto my facebook account and when I did Joeli's beautiful face was everywhere I looked. I cannot begin to tell y'all what that did for this mama's heart!!! I am so, so proud of my girl! I am so thankful for the love and support I've found through my girl's voice. Thank you so much! </span><br />
<span style="font-family: arial;"> </span><br />
<span style="font-family: arial;"> We go through life with our own plans and seldom stop to consider how they might change given life's circumstances. We steer far away from the "what ifs". When the "what ifs" happen we are left floundering like a fish out of water wondering what to do now. I never in a million years imagined that I'd be celebrating one of my children's birth without them. Plans change. Plans aren't always my own. I know I've said this before and probably more than once but it bears repeating!</span><br />
<span style="font-family: arial;"></span><br />
<span style="font-family: arial;"> <span style="font-size: large;">"For I know the plans I have for you,</span></span><br />
<span style="font-family: arial; font-size: large;"> Declares the Lord, plans to prosper</span><br />
<span style="font-family: arial; font-size: large;"> you and not to harm you, plans to give</span><br />
<span style="font-family: arial; font-size: large;"> you hope and a future." ~Jeremiah 29:11 (NIV)</span><br />
<span style="font-family: arial; font-size: large;"></span><br />
<span style="font-family: arial;"> I love that verse. Sometimes I find it hard to believe but I know that it's truth. I know that He had much bigger plans for Joeli and that she was bigger than this life. That's not always what I want to hear but what a sad place it'd be if everyone was told what they wanted to hear. Most would live a lie. So anyhow, my celebration plans for Joeli were definitely changed. As excruciating as it often is, it's also very important that we celebrate her in a way that is happy. She was happy. She deserves to be celebrated that way. Brelan and Mileigh wouldn't have it any other way. Oh to have the outlook of a child! I now know why God talks about having faith like they child. I learn so much from my girls. I'd asked the girls the night before what kind of cake they wanted me to get for Joeli. Who celebrates without cake?! They decided on a cookie cake and the balloon order was placed. I drove to lunch with a friend and picked out flowers in a heavy haze. After car line and piano lessons, Brelan, Mileigh, and I went to pick up balloons and all the "plans" were beginning to get to me. It was becoming harder to breathe. Soon, I'd have to witness 2 sisters celebrate the other in a strange silence. </span><br />
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<span style="font-family: arial;"> In the South Alabama heat in mid August we decided not to chance transporting the balloons again to her resting place. We released them in our backyard before going to her marker. While watching them drift high I noticed one that lagged behind...she always seems to speak. We carried flowers, cleaning supplies, and a balloon to her marker. There Mileigh placed a stone she found in one of our favorite stores in Ann Arbor, MI this summer on Joeli's name. How sweet the bond is between sisters who never met. Brelan sat quietly although this mama knew her heart was hurting...she read the marker and watched as we cleaned and attended to the stone. We left there for dinner then came home to cookie cake in honor of our JoJo. </span><br />
<span style="font-family: arial;"></span><br />
<span style="font-family: arial;"> I try to do something different each year in regard to awareness for Joeli's birthday and this year we launched the #11for11 challenge through our <a href="http://www.gofundme.com/TeamJoMi">www.gofundme.com/TeamJoMi</a> page. So many of you responded and I was truly amazed. I say all of this because I want you to know that you were part of our celebration. It was because of your praying, sharing, and donating that I was able to purchase every single thing for Joeli's celebration yesterday! Thank you, from all of us. I do typically take pictures and I feel like that's normal. I know it might be taboo for some but this is the life we've been given and this is the plan that was put before us for Joeli, so I took pictures. I wanted y'all to see what you were a part of. Your comments, posts, and pictures supporting Team JoMi yesterday for Joeli's birthday kept me going and gave me the strength I needed to find joy in our situation. I've never posted a picture of Joeli's marker publicly (I have privately) but I am today. It's the only place where I can photograph all of my children in one place and it's beautiful. </span><br />
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<span style="font-family: arial;"> Thank y'all again, from the bottom of my heart and please enjoy the memories made from Joeli's celebration of life. I'm honored that y'all would take the time to share and to become part of our family. Be Blessed! Sing Loud!</span><br />
<span style="font-family: arial; font-size: large;"></span><div class="separator" style="clear: both; text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXiKK0LkMUjYFPeh6eIH-pQAh0zNoU3tckJkZ-PYdnNwPPzyNJVbfbXypQYVCyEtnd9LItPlJfsoP130m1P9nupqzNi-3-Xx0bSSys02ns4_mcj_WFg6WpzcbbloRkXiTJYDean7N-2Xxo/s1600/image-1.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXiKK0LkMUjYFPeh6eIH-pQAh0zNoU3tckJkZ-PYdnNwPPzyNJVbfbXypQYVCyEtnd9LItPlJfsoP130m1P9nupqzNi-3-Xx0bSSys02ns4_mcj_WFg6WpzcbbloRkXiTJYDean7N-2Xxo/s640/image-1.jpeg"> </a> </div><div class="separator" style="clear: both; text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgU3qgadD5nijT1PPxZp_n8YwE7nmu0kBJ5kEu2lWq5KbDhmKmzNCcuRdoZzbPLYtq4L4MUUQ3VRMU8qHiS8VGgRwAepSlHaY-z6KO8KcEUGrBo827Ab9iAj3wrO0t0s0TuO3xS94vED0uU/s1600/image.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgU3qgadD5nijT1PPxZp_n8YwE7nmu0kBJ5kEu2lWq5KbDhmKmzNCcuRdoZzbPLYtq4L4MUUQ3VRMU8qHiS8VGgRwAepSlHaY-z6KO8KcEUGrBo827Ab9iAj3wrO0t0s0TuO3xS94vED0uU/s640/image.jpeg"> </a> </div>Britthttp://www.blogger.com/profile/07642661028627141916noreply@blogger.com0tag:blogger.com,1999:blog-2439041528361649428.post-16494442962945634152014-08-18T06:11:00.000-07:002014-08-18T06:11:55.265-07:00Happy 11th Birthday, Joeli Lynn!<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: arial;">Happy 11th birthday to this beautiful little girl! My heart is torn in such a way that it's beyond being described in words. How can one of the best days of my life also be one of the most gut wrenching, heart breaking, and breath taking ones all at the same time? August 18, 2003 was a day that changed who I am forever. Joeli graced us with her presence that humid Monday at 12:03 in the afternoon and it was at that moment that I became "mama". She was perfect. She was chunky, pink, and screaming. I sang to her, I held her, all was right in the world. </span><br />
<span style="font-family: arial;"></span><br />
<span style="font-family: arial;"> Joeli loved parties and I loved hearing her talk about them. She pronounced "party", "pah-tee" and she absolutely loved everything about them and anything could call for a celebration. As many of you know, planning parties can often be a little hectic. Embrace that crazy...I would. I wish I could. I'd give anything to be planning her party right now. To invite her friends and see her be celebrated in the way that every little girl deserves. I hurt when all I can do from this place is celebrate without her. My heart breaks when we release balloons with Brelan and Mileigh at their big sister's resting place and cut her cake without her. The tears are relentless and refuse to stay put when I explain over and over that this is just God's plan and that Joeli is having her party in Heaven. What do you say to your children when they ask why they can't go to their big sister's party in Heaven? I remember Brelan and Mileigh both at different times asking when we could go to Heaven and why it couldn't be now...I wish I had those answers. I wish the answer was "NOW"! </span><br />
<span style="font-family: arial;"></span><br />
<span style="font-family: arial;"> It's not right. It's not fair...but what is fair? I don't teach my girls that anything about this life, this world is fair because it isn't. Period. I'm raising them to remember Joeli and to remember that she was here and that she deserves to be heard and that she will always be their big sister and will always be with them no matter where they go or what they do in life. I'm raising them to celebrate people because people matter. I'm raising them to love big and to sing loud. I'm raising them to find the good because otherwise there is so much bad. I'm raising them to look forward to life no matter what it throws and to speak for themselves and make themselves heard.</span><br />
<span style="font-family: arial;"> Sometimes I wonder what a birthday celebration is like with Jesus! Can you imagine?! I cannot begin to fathom a birthday party in Jesus' back yard!!! When I think of how I look at my girls and how blessed I am to call them mine I can only imagine how He looks at us and how He celebrates us and longs for us. </span><br />
<span style="font-family: arial;"></span><br />
<span style="font-family: arial;"> I know sometimes life gets crazy, kids get cranky, and we wonder how much longer till bedtime. Hold on tight to that crazy. You never know when it might change and you'll be left in a fog wondering what to do now. I have been so blessed by so many of you. In a world that will never be right for me, I've found a place with many of you who choose to love me and to love my girls and to make Joeli heard. Thank you! </span><br />
<span style="font-family: arial;"></span><br />
<span style="font-family: arial;"> Happy Birthday, Joeli Lynn!! You are one brilliant little girl who truly blessed this world! </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">I love you, all heart!! I promise there will come a day when we will never again be apart! Sing Loud. You make me so very proud!</span><br />
<br />Britthttp://www.blogger.com/profile/07642661028627141916noreply@blogger.com2tag:blogger.com,1999:blog-2439041528361649428.post-8785759485273765152014-08-12T16:03:00.001-07:002014-08-12T16:14:40.356-07:00School Days and an Angel Plays...<span style="font-family: Arial, Helvetica, sans-serif;"> <span style="font-family: Times New Roman;">
</span></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="font-family: "Arial","sans-serif";"> What a day! Today, for us,
was the last official day of summer. Brelan and Mileigh had "meet the
teacher" this morning and with that comes all of the other "back to
school" activities. I woke this morning with that familiar heaviness that
I often have. I went about as best I could. I peeled myself out of bed and
stumbled to the coffee pot and wondered how I'd made it through last school
year with the early mornings etc. As we went about doing all that is our new
routine I began to think a little clearer. With each sip of coffee I began to
function a little more. What a fabulous invention...coffee that is ha! The
girls and I went about our morning chores...breakfest, making beds, brushing
teeth, and washing sweet faces. You'd think those things would be
routine...then came the hair...and the flood gates opened. Brelan, with her new
do, came to me and said "mama, will you flat iron my hair for meet the
teacher day please"? My heart sank and for a moment I wondered what in the
world was wrong with me. Then I knew. I missed her again today. Joeli was so particular about her hair
and no one could do it like mama. Here I stood with Brelan patiently waiting
for me to answer her routine question and I was stuck in a memory fog. My
answer was delayed but eventually said of course and started on her hair. Next
was Mileigh's and I faught tears the entire time. All was done and they both
approved! </span><br />
<span style="font-family: Times New Roman;">
</span><br />
<span style="font-family: "Arial","sans-serif";"> We made our way to the truck,
all loaded down like pack mules, with school supplies. We soon found ourselves
in an assembly inside the worship center with every other student and parent
and load of school supplies. I felt as though I was dreaming. Who were these 2
beautiful little girls sitting next to me and where were my little roly poly,
full gum smile babies?! I felt like I was in an episode of Charlie Brown
listening to the principal as I looked at my girls. "wa wa, wa wa
wa..." You know the one! Without warning a tear rolled. I was quick to
catch it and recover without being noticed but began to wonder just what it
would look like if Joeli were sitting there too. She'd be entering her last
year of elementary school...5th grade!! Are you kidding me right now?! She'd be
beautiful and smart and funny and sassy. I wonder what she'd look like and what
she'd sound like. Would she like school or would she be nervous...I wish I knew. I
quickly recognized that emotionally I was about to fall over an edge that I
wouldn't be able to salvage gracefully. I began to think of what she actually
was doing.</span><br />
<span style="font-family: Times New Roman;">
</span><br />
<span style="font-family: "Arial","sans-serif";"> I am quite sure that my Joeli
Lynn was sitting above watching over her baby sisters and smiling as she
played. Oh to play at the feet of The King!!! Can you imagine?! I can see her
smiling and while I long to kiss her sweet face I am so honored to have known
the one that is now watching over Brelan and Mileigh. So...tomorrow is day 1 of
3rd and 1st grade for Brelan and Mileigh and one day closer to me having all of
my girls together again. I'll teach them to appreciate this day...all the while
my angel plays. Sing Loud, sweet girl!</span><br />
<span style="font-family: Times New Roman;"></span><br />
<span style="font-family: "Arial","sans-serif";"> Please continue to pray for
our family...they do not go unheard. I feel them and I know when His people
pray, He hears! They carry me. Be Blessed!</span><br />
<br /></span><span style="font-family: Times New Roman;">
</span><div class="separator" style="clear: both; text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5bxSB97AeFR2Co540R99Q0xJzsQ9g5Y21nMExYZMoFI6-bSOdFOeATOCdafMvQOclvQaSWA3limwXD-OJnVp79Cph8Fv-O0APNXgn7NFYplbC29s1VPFjyjZdF0QVMC_WansUU_K0em8g/s1600/20140812_080612.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5bxSB97AeFR2Co540R99Q0xJzsQ9g5Y21nMExYZMoFI6-bSOdFOeATOCdafMvQOclvQaSWA3limwXD-OJnVp79Cph8Fv-O0APNXgn7NFYplbC29s1VPFjyjZdF0QVMC_WansUU_K0em8g/s640/20140812_080612.jpg"> </a> </div>Britthttp://www.blogger.com/profile/07642661028627141916noreply@blogger.com0tag:blogger.com,1999:blog-2439041528361649428.post-76211123189752200392014-08-08T09:31:00.000-07:002014-08-08T09:31:50.893-07:00BMB, HLA...Just Another Day!<span style="font-family: Arial, Helvetica, sans-serif;"> Hey Y'all! So...this summer has been insane and has flown by so quick! In just 2 short months we've traveled to and through 6 states, made friendships that will last a life time, come face to face with facts and decisions we wish we weren't a part of, and prayed through a procedure that will become "routine". Shortly after returning home from the Neutropenia conference in Ann Arbor, MI we were scheduled for Mileigh's first Bone Marrow Biopsy (BMB) and HLA typing for Chad, Brelan, and Mileigh. Mileigh's physicians are a little drive away so we were referred to the Ronald McDonald House for the night prior to her procedure so that she wouldn't have to be awake so long without eating prior. I vaguely remember a stay in a Ronald McDonald House around the time of my diagnosis in 1985. What an amazing organization! It truly was a "home" away from home. </span><br />
<span style="font-family: arial;"> We haven't received results at this point other than what we already knew. She was severely neutropenic at the time of the procedure but we knew that too. Her ANC was 200 and that was after days of GCSF boosts and rest. Cyclic Neutropenia, as all neutropenias, certainly has a mind of it's own. It responds when it's good and ready and only then. No sooner. One of the findings read "high number of immature cells to mature cells"....ya think?! As a mama, I am very anxious about the rest of the results and just want my girl well. The process for the BMB isn't terrible but for me...the only memory and experience I had to this point was with Joeli and that didn't go well. I spent a sleepless night in the Ronald McDonald House holding Mileigh, praying over Mileigh, crying, thinking of Joeli, and wondering how different life might be without Neutropenia. The procedure for Mileigh was very different from Joeli's. It was different in a positive way. We were informed and treated very well. The doctors spoke directly to Mileigh and eased her little nerves. She is definitely my child and had plenty to say HA! She woke from her anesthesia induced nap in a fierce way! She demanded answers..."where is my mama?", "are yall done!?", and "I wanna go home, now!". I smile when I remember that curly headed girl waking up such a beast. They had to close the glass recovery room doors because she didn't care who heard. Man, what have I gotten myself into?!</span><br />
<span style="font-family: arial;"> Then there's my Brelan with her huge heart. Brelan has only had bloodwork drawn once in her whole 8 years and she jumped in that lab chair like it wasn't nothing because this was to help her baby sister! How in the world did I get so lucky to call these girls mine!? Brelan has grown so much and so fast lately. I tried to capture that with photos over the summer in Michigan and also while she was literally and figuratively beside her baby sister through these processes. I am so proud of the little people they are. I see how Brelan looks at Mileigh and am reminded of how Joeli looked at Brelan. Brelan doesn't have her own memories of her big sister but she's been given more than a memory. She has been qualities of Joeli that she can be proud of. If only we could all love that big! </span><br />
<span style="font-family: arial;"> So for now, we wait...we pray...we hope...we continue to raise awareness and remain thankful for what we have. There's so much to say and so much to do. School starts next week and that's a whole different post. I pray that y'all find encouragement here and I truly appreciate the encouragement you give. Sing Loud, Be Blessed!</span><br />
<span style="font-family: arial;"></span><br />
<span style="font-family: arial;">Here are a few pics from this time =) I particularly adore the one of Brelan at Mileigh's bedside..it screams "I love my baby sister and she's mine!" to me. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Brelan and MiBeth with Ronald McDonald himself at the house =).</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">My Neutrohero.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">My brave Brelan!</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Neutrohero!</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Sweet sisters.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Ready to get this over with! New "lovey" for the O.R.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_uX_el3iO4R_KJVas6wL-eEfapahA6zBGUOeLL9W8FI0fefvhuzYFlyaZUlhtfkx9_zw8HluUkWPx0rE1OoK1HsLMU1M0MDoxpk-Cr-FQ4coJbTHSR_cJito6lPkqPve8k1W1vh199Ef9/s1600/20140730_104534.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_uX_el3iO4R_KJVas6wL-eEfapahA6zBGUOeLL9W8FI0fefvhuzYFlyaZUlhtfkx9_zw8HluUkWPx0rE1OoK1HsLMU1M0MDoxpk-Cr-FQ4coJbTHSR_cJito6lPkqPve8k1W1vh199Ef9/s1600/20140730_104534.jpg" height="320" width="180" /></a></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I adore this love! Such a sweet big sister!</span></div>
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<span style="font-family: arial;"></span> </div>
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<span style="font-family: Arial, Helvetica, sans-serif;">HLA information.</span></div>
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Britthttp://www.blogger.com/profile/07642661028627141916noreply@blogger.com0tag:blogger.com,1999:blog-2439041528361649428.post-69522199578295259442014-07-16T11:22:00.000-07:002014-07-16T11:22:26.745-07:00Bittersweet Meet...<span style="font-family: Verdana, sans-serif;"> Well hi there =). For many of you who follow Joeli's Song, you also parent a neutrohero. I see your lives via social networking and have often wondered if I'd ever find myself face to face with any of you. Last weekend I did. For those of you who aren't a part of the neutro family but follow and support and possibly love someone who is, I'm referring to the National Neutropenia Network's family conference held in Ann Arbor, Michigan this year. I've attended several of these conference but this year was very different. This year Brelan and Mileigh were old enough to attend the kids camp so they made the trip with me. We car pooled with a sweet neutro friend of mine and her son and the trip has been amazing. Also, this conference was a first since Joeli's Song was launched in the blogging world. Often, in the midst of conferences, I've found myself quiet and alone. This conference was far from quiet and alone. So many of you found your way to me, hugged me, talked to me, cried with me, oohed and ahhed over my girls, and remembered the angel who made me the mama I am. Thank you! </span><br />
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<span style="font-family: Verdana, sans-serif;"> There were so many new faces this year...so much so that it was record numbers for the National Neutropenia Network. Your hard work in raising awareness is paying off!!! You're being heard and what a difference it has and will continue to make! Sing Loud!! There was talk of the device for at home cbc testing and a future oral medication in place of injections. How I long for the day that our babies no longer require sticks daily. </span></div>
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<span style="font-family: Verdana, sans-serif;"> Brelan, my non neutro, was very apprehensive about attending because of a couple of reasons...1. she isn't "sick" and 2. she'd never been. I reassured her there were other siblings attending who weren't sick either but who loved their brother or sister who was. She quickly connected with a friend in kids camp and ironically enough this friend is exactly the age of Brelan's big sister Joeli (10). If that ain't a God thing, I don't know what is. It brought tears to my eyes to see the two of them chat and play. It brought a happiness to my heart that has been gone for so long. It will never be the same but I know that my Joeli was all over that place and made divine appointments to comfort her baby sisters. </span></div>
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<span style="font-family: Verdana, sans-serif;"> To you mamas, and you know who you are, thank you for loving me and my girls. Thank you for stepping out of your comfort zones to talk to us and love on us. It truly meant the world and made more of a difference than you'll ever know. </span></div>
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<span style="font-family: Verdana, sans-serif;"> Since the conference ended on Sunday, we've stayed in town to visit with more of our neutro family and what a blessing it has been. Our stay ends tomorrow and we will head back into our world where neutropenia isn't common place any longer. The week has been full of coffee, hugs, talks that last into the morning hours, plenty of syringes and neupogen ;), and memories that I'll hold close to my heart forever. I've watched our children play and love like all is well...I suppose for them it is. I pray and search and raise awareness in hopes of a cure for our children. I pray that I live to see the day that our neutroheros are no longer neutro. I've had more profound moments in these last 7 days than I can count. Joeli has made her presence known all around. It's surreal when I think about it. It sends me reeling back to the name that many of you have so lovingly given her "the guardian angel of neutro kids". She was certainly with our kids during this time and she has sure been with her mama. I am so honored to be called "Mama" by Joeli, Brelan, and Mileigh. I am so honored to call so many of you "friend" and I'll be forever grateful for those of you who keep your hands at my back pushing me forward as I make Joeli's Song heard.</span></div>
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<span style="font-family: Verdana, sans-serif;"> Don't give up...keep fighting and keep singing. Keep in touch, open up, you never know who you might be holding up! Be Blessed!</span></div>
Britthttp://www.blogger.com/profile/07642661028627141916noreply@blogger.com0tag:blogger.com,1999:blog-2439041528361649428.post-254059543027417462014-06-30T19:56:00.000-07:002014-06-30T19:56:14.725-07:00What's Your Limit?<span style="font-family: Verdana, sans-serif;"> Hi! Long time, no read huh?! It's definitely been one jam packed summer thus far. As soon as the girls completed K5 and 2nd grade this year we left for Tennessee aka "the place where I breathe easier"...smile. Since then we've been preparing for the longest road trip we've ever taken. Can you guess? Ann Arbor, MI for the NNN Conference...DUN DUN DUN =). </span><br />
<span style="font-family: Verdana;"> Our lives have been pushed to the limit in many ways recently...girls are growing way too fast, hemoc appointments, hard conversations, scheduling bone marrow biopsies, and just trying to keep our heads above water. Seems like we are right there with the rest of the world. Hence the title of this post...what's your limit? At what point do you break? Typing the question makes me slightly uncomfortable so I'll assume reading it and allowing yourself to seriously consider it's truth does the same. </span><br />
<span style="font-family: Verdana;"> To be quite frank with you, I've had enough. Period. End of story. As selfish as it may sound I am finding myself begging for a divine answer from the One who died for me. I find myself demanding, not asking, but demanding for a time when life won't be so dang hard. I find myself begging for a place in this world where marrow doesn't fail, where family understands, where friends are real, and where we are all healed. I wonder who sets the standards for health insurance companies and what jack-o is able to sleep at night knowing full well they just denied life saving treatment and/or preventative treatment to ANOTHER neutropenic.</span><br />
<span style="font-family: Verdana;"> I wonder when my little girl will be considered a priority instead of a congenital marrow failure that's worth setting on the back burner solely because hers happens to be predictable. In what universe does that even make sense?! She hits ZERO every 14 days...I hit ZERO every 14 days...her big sister DIED at ZERO... Where is the limit here? I've reached mine...have you? Honestly, I reached mine a long time ago and I've been holding on here since then. What happens when I can't hold here any longer? What happens when neutropenia is no longer "treatable"? I just want a cure for my girl, for yours, and for you. </span><br />
<span style="font-family: Verdana;"> I have found encouragement in many of you and for that I'll be forever grateful. You have no idea how big of a role you've played in holding me in place during a time when I couldn't hold myself. I know this post hasn't been exactly uplifting...sorry. Ok, no I'm not. It is what it is...right?! Right. It's just where I'm at. I'm at my limit. Again, I'll ask, where is yours? </span><br />
<span style="font-family: Verdana;"> I am looking forward to a road trip with my friends and sweet girls. I am looking forward to meeting so many of you there. I can't wait to put faces with so many names and say thank you. Please pray for us tonight. Tomorrow. Anytime. I pray for you when I can't find the words to pray for myself. </span><br />
<span style="font-family: Verdana;"> Sing Loud...I sing when I cannot speak...I sing when I cannot pray...I sing.</span><br />
<span style="font-family: Verdana;">Be Blessed!</span><br />
<span style="font-family: Verdana;"> </span>Britthttp://www.blogger.com/profile/07642661028627141916noreply@blogger.com0tag:blogger.com,1999:blog-2439041528361649428.post-32701471689169122772014-04-10T22:29:00.001-07:002014-04-10T22:29:47.165-07:00Just a minute...<span style="font-family: Arial, Helvetica, sans-serif;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">I just need a minute.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">A minute to be well.</span><br />
<span style="font-family: Arial;">A minute away from this roller coaster from hell.</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">I just need a minute.</span><br />
<span style="font-family: Arial;">A minute to be free.</span><br />
<span style="font-family: Arial;">A minute where Neutropenia doesn't define me.</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">I just need a minute.</span><br />
<span style="font-family: Arial;">A minute to breathe.</span><br />
<span style="font-family: Arial;">A minute to live worry free.</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">I just need a minute.</span><br />
<span style="font-family: Arial;">A minute that's new.</span><br />
<span style="font-family: Arial;">A minute with you.</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"> Hey. Funny how even in the Neutropenic life, it can still throw curve balls. You'd think we'd be used to that right?...Nope. I suppose we probably become more accustomed than the norm to the ever changing plans but often Neutropenia grows another head! I am personally struggling lately and I just want to feel good without having to fight so hard. There's so many "I's" in there right?! I see Mileigh struggle to just feel good on some days and I want to teach her to push through because that's what this world requires but then I just want to wrap her up because I KNOW that feeling. I want her to always have a place to land when she just can't go. I want Brelan to have that too...for every other reason aside from Neutropenia.</span><br />
<span style="font-family: Arial;"> As ugly as Neutropenia is and can be, it is sure wrapped in some beautiful packages. People often forget the struggle simply because it's wrapped in beautiful people. Every now and then we just need a minute...</span>Britthttp://www.blogger.com/profile/07642661028627141916noreply@blogger.com0tag:blogger.com,1999:blog-2439041528361649428.post-11802007241926733232014-03-17T22:34:00.000-07:002014-03-17T22:34:58.570-07:00Panic Stricken Randomness<span style="font-family: Arial, Helvetica, sans-serif;">I needed a place to go today</span><br />
<span style="font-family: Arial;">It's not supposed to be this way.</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">I want to hold you tight right now</span><br />
<span style="font-family: Arial;">and trace the beauty of your brow.</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">I tell them how you fought so brave</span><br />
<span style="font-family: Arial;">You're fighting now, even from the grave.</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">Brelan and Mileigh miss you so</span><br />
<span style="font-family: Arial;">God, why did she have to go?</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">I want to feel your sweet face again</span><br />
<span style="font-family: Arial;">I want to touch and breathe you in.</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">I don't know how to do this here</span><br />
<span style="font-family: Arial;">Here in this place of lies and fear.</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">You brought light in a darkened place</span><br />
<span style="font-family: Arial;">I miss that sweet smile on your face.</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">They tell me of their thoughts of you</span><br />
<span style="font-family: Arial;">The dreams they dream are never new.</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">They meet you when the world is at rest</span><br />
<span style="font-family: Arial;">It's then that they play the best.</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">I find a smile now and then</span><br />
<span style="font-family: Arial;">when I think of you with them.</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">Watch over your baby sisters please</span><br />
<span style="font-family: Arial;">Watch over them and watch over me.</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">Tell Jesus to scoop you up real tight</span><br />
<span style="font-family: Arial;">that's your mama hugging you tonight.</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">These tears that fall are not in vain</span><br />
<span style="font-family: Arial;">You, Joeli Lynn, are bringing change!</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">I love you sweet girl, All Heart</span><br />
<span style="font-family: Arial;">One day I'll be there and we will never part.</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">Until the day we meet again</span><br />
<span style="font-family: Arial;">Remind us every now and then.</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">I'll fight for you till my last breath</span><br />
<span style="font-family: Arial;">You're saving many from senseless death.</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">When night is still and silence so loud</span><br />
<span style="font-family: Arial;">I think of you and I am so, so proud.</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">So, these tears that burn my face tonight</span><br />
<span style="font-family: Arial;">Are adding fuel for your fight.</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">Goodnight sweet girl, I love you All Heart</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">Around the world</span><br />
<span style="font-family: Arial;">In the house</span><br />
<span style="font-family: Arial;">On the street</span><br />
<span style="font-family: Arial;">I even love</span><br />
<span style="font-family: Arial;">"your stinky feet" ;)</span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">~I got in bed tonight with a heavy heart. I just miss my girl, that's all. Panic set in and instead of succumbing to it's grips I decided to get up and jot down some things. This came out. With life being so busy with Brelan and Mileigh lately, I often find myself wondering what it would be like with Joeli too. I wish I knew. They talk about her a lot. I like that. I know that they'd be close. Makes me proud to hear them include her in their little lives. They don't have any memory of her alive but you'd never know that to hear them speak of her. I want the world to hear Joeli's song. I want them to know that it didn't have to be this way. I want parents to have appropriate information about their children who suffer from Neutropenia in any form and I want children to be treated with appropriate medical care regarding Neutropenia. Appropriate is the key word here...it doesn't have to be the "norm" to be appropriate. People need to know that. This post may be random at best...it is what it is. I often find myself at a loss. Your comments and encouragements carry me some days. I know there's fear in that. I know Joeli's story is someone else's worst nightmare. I know nightmares cause us to run in the opposite direction. Please know that she needs you. I need you. Other parents need you. Don't lose out on being a blessing just because you think someone else has it covered. Be Blessed!</span><br />
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<span style="font-family: Arial;"></span>Britthttp://www.blogger.com/profile/07642661028627141916noreply@blogger.com0