Hey Y'all, if you follow Joeli's Song at all you know I haven't posted in some time. I have typed hundreds of words and thought of hundreds more only to delete. One thing I've always strove to do was to find the silver lining in the life I've been given. I want you to find hope and inspiration here. Truth is, hope and inspiration is often found in the most hurtful places. It's harder to see there and even harder to believe. I'm saying this almost as a warning because I don't feel hopeful and I sure don't feel inspirational either. I feel compelled to write anyhow. I feel compelled to let you see even though for months I've tried to protect, even you, from my world, my hurt, and my words. So, with that said, let's talk about Thankfulness Vs. Selfishness.
I suppose it comes at a good time, with us just on the other side of Thanksgiving...He seems to do that a lot with me. I'd like to pose some questions. Were you thankful as a child? Did you realize what you didn't have? Did you appreciate relationships you were given? Were you thankful for that first thrilling and terrifying moment that you looked your soon to be husband and/or wife eye to eye at the other end of that aisle that seemed to stretch for miles? Did you cry with joy or fear when you saw those two pink lines? Let's stop here.
We spent our Thanksgiving Holiday in the mountains of Tennessee. I dream of living there. I'm thankful for a place that allows me to breathe a little easier for some unknown reason. I thought I'd do fine. I was away from our home, with immediate and some extended family, and had a jam packed itinerary of things to do with our girls. I've been seeing a therapist almost weekly, given medication to help with anxiety, advice for coping, and just in general preparing myself for this time of year. My current hemoc is fairly new to me but has taken my care and treatment seriously and more than just my body. He has been phenomenal in caring for the emotional effects of chronic illness and has truly shown his passion for what he does. So, in my type A fashion, I was more than prepared for Thanksgiving. NOT.
In reference to the questions I asked earlier in this post. All I ever wanted was to be a mama. I was thankful for my husband and for the simple life we started. I didn't want fancy. Never have. Nothing wrong with fancy but you know. More importantly, to me, I WAS THANKFUL FOR THOSE TWO PINK LINES!!!!! I was told pregnancy, if even possible, would most likely be a challenge for me. I WANTED MY BABY. Come to find out...I wanted ALL of my babies. I had four pregnancies..Joeli, an angel we lost at ten weeks, Brelan, and Mileigh. Every one was planned and prayed for. Every one was wanted. I cannot for the life of me understand how women are blessed with healthy babies that they never planned or wanted and some even abused. How is that justified?! Why do they get to keep their babies and why do they get to go about life not giving a damn when that sweet child looks at them and sees a hero instead of the sorry pieces of trash that they are?! Call me selfish, I don't care.
I don't have SCN, I'm not severely neutropenic all the time. I am Cyclic and only down for parts of the month. Joeli was the same way. Mileigh is that way. Should I be thankful for that?! I'll be 32 next week and for 32 years my body has been on a never ending roller coaster of constant highs and lows that wreak havoc. I hurt EVERY DAY. Add to that, that I've now buried my little girl and I hurt in a way that has no words! I look into the eyes of a healthy eight year old Brelan and wonder what her life will be like later because she has a sick mama and a sick sister and because she has to understand that her big sister DIED! I look at Mileigh and hope and pray for a cure in time for her. Mileigh has done so well and hasn't had serious infections in so long. I suppose that's where I should say I'm thankful. Why can't I be thankful for normal stuff like chicken pox and crap...nope...let's be thankful for neutrophils and no pseudomonas. I'm sorry, but WHAT?!
This pain makes me want to run away but where the heck do you run? Will it be different anywhere else? NO! It won't and it won't change. My heart will break every day for the rest of my life. Every morning that my lungs fill with air her's do not. Every morning that I fix them breakfast and pack their lunches and praise their good grades and kiss their bobos I can't do any of that for her. EVER! I AM NOT THANKFUL FOR THAT CRAP! I want to fix her hair, I want to kiss her good morning and good night, I want to fight with her over her outfit, I WANTED MY BABY! I wanted to watch her grow up and teach her how to live, how to love, how to cook, how to be a good mama, and I wanted to hold her for longer than three years and five months to the day. She was mine. She is mine and I can't even touch her.
I don't mind fighting to raise awareness, I didn't mind before. Why must I fight for everyone else's child when no one fought for mine?
I think I'm done. I don't even know how to end a post like this other than to say kiss your babies, hold them while you can, play with them while you can, because one day they may slip right from your hands.
Selfishly I'll ask you to pray for this broken heart of mine.
Sing Loud, Joeli Lynn...until I see you again!
Saturday, December 6, 2014
Thursday, October 2, 2014
Forsaken Much?
Long time, no post huh?! Our lives have been slightly nuts recently with Chad traveling half way around the world, the girls' school and softball activities, and throw in a neutropenic admission for me and things get real fun! Schedules are finally back to our normal and the ebb and flow of our lives have resumed. Chad is back to work, homework and softball rule our night lives, and my veins are slowly recovering from the empirical iv antibiotics required for fever and an ANC of zero.
I've had some time to think lately as my body required me to slow down in order to heal. During that admission there were several very painful times when I felt "forsaken"... Have you ever felt that way? Just thrown to the wolves and hope ya make it out alright? I have recently, due to several different types of situations, found myself feeling that way. It's not even in my beliefs to be forsaken! How does this happen? As I laid in my hospital bed with my ninth iv placed and connected to life saving medication that my Joeli was denied, the feeling of being forsaken took hold in my soul. I couldn't even pray to ask why. It didn't matter that I couldn't pray. He heard my heart and He reminded me in so many ways that HE WILL NEVER FORSAKE ME!
"Be strong and courageous. Do not fear or be in dread of them, for it is the Lord
your God who goes with you. He will not leave you or FORSAKE you."
~Deuteronomy 31:6
I wish that I were better at living His word. Sometimes it seems my errors are too big. They're not. I know I mess up a ton but I also know somehow or another I'll get to the other side of all of this. You will too. He will never just be ok with us walking the other way. Funny how life and all it's curve balls happen and there's still that something that sends you reeling back, back to what you know at the core of who you are.
There are so many neutroheros fighting right now. Fighting for life, for wellness, for tomorrow and some just fighting for today. I'm positive that even in my struggles there are so many with so much more and yet I found myself feeling forsaken and alone. I know that somewhere there is a cure for Neutropenia. I know that even when I feel forsaken, He is bigger! He is big enough to handle whatever I feel and whatever we have to throw at Him. Sometimes, it's hard to reach out, ask for help, or just admit we need the help when it's offered. It's hard to trust in a world that finds humor in pain. Truth can't be shaken...it may be hard to see for a time but it's there. We are not forsaken! SING LOUD!
I've had some time to think lately as my body required me to slow down in order to heal. During that admission there were several very painful times when I felt "forsaken"... Have you ever felt that way? Just thrown to the wolves and hope ya make it out alright? I have recently, due to several different types of situations, found myself feeling that way. It's not even in my beliefs to be forsaken! How does this happen? As I laid in my hospital bed with my ninth iv placed and connected to life saving medication that my Joeli was denied, the feeling of being forsaken took hold in my soul. I couldn't even pray to ask why. It didn't matter that I couldn't pray. He heard my heart and He reminded me in so many ways that HE WILL NEVER FORSAKE ME!
"Be strong and courageous. Do not fear or be in dread of them, for it is the Lord
your God who goes with you. He will not leave you or FORSAKE you."
~Deuteronomy 31:6
I wish that I were better at living His word. Sometimes it seems my errors are too big. They're not. I know I mess up a ton but I also know somehow or another I'll get to the other side of all of this. You will too. He will never just be ok with us walking the other way. Funny how life and all it's curve balls happen and there's still that something that sends you reeling back, back to what you know at the core of who you are.
There are so many neutroheros fighting right now. Fighting for life, for wellness, for tomorrow and some just fighting for today. I'm positive that even in my struggles there are so many with so much more and yet I found myself feeling forsaken and alone. I know that somewhere there is a cure for Neutropenia. I know that even when I feel forsaken, He is bigger! He is big enough to handle whatever I feel and whatever we have to throw at Him. Sometimes, it's hard to reach out, ask for help, or just admit we need the help when it's offered. It's hard to trust in a world that finds humor in pain. Truth can't be shaken...it may be hard to see for a time but it's there. We are not forsaken! SING LOUD!
Monday, September 8, 2014
When A Little Heart Breaks
Hey there. I'm just gonna jump right in on this one. My sweet Brelan has been dealt enough in her short eight years. She was forced to say good bye to the only big sister she had before she was even capable of understanding what that meant. She was thrown into the role of big sister when Mileigh came along. She's had to take a back seat often simply because she's healthy and Mileigh isn't. She's been given way more than an eight year old should have been, in my opinion. I have to believe that this is just part of God's plan in shaping her and molding her into exactly who she needs to be. Sometimes I wish that process wasn't so hard especially when they are so young.
This last week has proven to be pretty tough on my girl. As a mama, I'm supposed to fix it. I'm supposed to ease her aching heart and make things better. Some things, I just can't. I wish I could. This world, this life, these circumstances aren't fair. I'm not raising little girls to believe that we live in a world that is fair, because it isn't. Life happens. Being the big sister of a neutropenic has played a pivotal part in who Brelan is. She is very knowledgeable about neutropenia and has a huge heart for those affected by it in any form. She truly cares.
I've watched my sweet baby grow into a beautiful little girl who cares about people. Maybe I have neutropenia to thank for that. It's odd to take that perspective when neutropenia has taken so much from me. I am compelled to find good. Good in the one thing that was meant to destroy my family. My Brelan is teaching me that. Sometimes I am at a loss...a loss for words, a loss as to what I need to do, just lost. I'm thankful for tiny hearts that are resiliant and that love so big. No matter what neutropenia has taken from my family, no matter how it's changed our course in life, and no matter what the future holds for us I know that I have been so blessed to be called "Mama" by three of the most precious little girls this world has every seen!
My heart aches when hers breaks. I find myself crumpled at His feet and begging for the right answers. Teach me to teach her the right way. This morning I was driving home from car line and found myself begging for God to hold her heart today when I cannot. Tears scortched my face and fell to my lap as I begged for Him to just give peace. I believe that He will because He never fails. I steer her to Him when my words fail. I have to believe that she will grow in Him and that peace will come when nothing else seems to soothe.
Pray for your little hearts...please pray for Brelan and Mileigh's too. We are truly thankful for you! Sing Loud!
This last week has proven to be pretty tough on my girl. As a mama, I'm supposed to fix it. I'm supposed to ease her aching heart and make things better. Some things, I just can't. I wish I could. This world, this life, these circumstances aren't fair. I'm not raising little girls to believe that we live in a world that is fair, because it isn't. Life happens. Being the big sister of a neutropenic has played a pivotal part in who Brelan is. She is very knowledgeable about neutropenia and has a huge heart for those affected by it in any form. She truly cares.
I've watched my sweet baby grow into a beautiful little girl who cares about people. Maybe I have neutropenia to thank for that. It's odd to take that perspective when neutropenia has taken so much from me. I am compelled to find good. Good in the one thing that was meant to destroy my family. My Brelan is teaching me that. Sometimes I am at a loss...a loss for words, a loss as to what I need to do, just lost. I'm thankful for tiny hearts that are resiliant and that love so big. No matter what neutropenia has taken from my family, no matter how it's changed our course in life, and no matter what the future holds for us I know that I have been so blessed to be called "Mama" by three of the most precious little girls this world has every seen!
My heart aches when hers breaks. I find myself crumpled at His feet and begging for the right answers. Teach me to teach her the right way. This morning I was driving home from car line and found myself begging for God to hold her heart today when I cannot. Tears scortched my face and fell to my lap as I begged for Him to just give peace. I believe that He will because He never fails. I steer her to Him when my words fail. I have to believe that she will grow in Him and that peace will come when nothing else seems to soothe.
Pray for your little hearts...please pray for Brelan and Mileigh's too. We are truly thankful for you! Sing Loud!
Tuesday, September 2, 2014
He REALLY hears!
Hey y'all! I have some crazy exciting news...I've been humbled to tears. When everything in life seems to be going to hell in a hand basket here He comes. I am so, so glad that He loves even me. I have done nothing, especially lately, to truly seek His face. Much of that comes from just being mad to be honest. As many of you know, our girls attend a private, faith based school that also happens to be our current church home. It has been a blessing when dealing with the neutropenia and school aspects. This year is very different for all involved in Brelan and Mileigh's education. Mileigh started first grade...did I just say that out loud?! Wow... Anyway, first grade means no naps. It also means, crap just got real!
I wasn't quite sure how to go about everything that neutropenia entails with these changes aside from what we already had in place. We do chronic illness letters, pull them both if illness presents in their peers, provide clorox wipes and hand soap, etc... So far, things have gone very smooth and communication has been above par from their teachers and school staff. I spoke with their headmaster shortly before school started because I wanted his opinion on how to go about these changes for both of them but especially for Mileigh. He was aware that we'd been to the family conference this summer and I filled him in on that trip as well as Mileigh's recent bone marrow biopsy. Part of that conversation led to us discussing Team JoMi tshirts. That tshirt fundraiser is what made that conference possible for my girls and I. He asked for a flier with info on them. We continued the conversation about Mileigh and where to go from here and decided a meeting with all staff involved would be appropriate.
Last week after school one day we had that meeting. Mileigh's teacher, Brelan's teacher, P.E. Coach, and Headmaster all in one room with one purpose...to keep Mileigh safe. In preperation for this meeting I thought I'd be intimidated...I wasn't. He heard there too! We gathered in Mileigh's classroom and there things became surreal. Here I was telling these people, who care about my little girls, about neutropenia! IMAGINE THAT! For so long, I've just wanted someone, anyone to just hear. Just hear what this is and how this affects our lives and how maybe just by knowing changes can happen. I have no doubt in my mind that those teachers and staff were divinely placed in my life and in the life of my girls. They listened to everything I had to say, even the hard parts. They asked questions on how they could help and even made suggestions. Essentially, our situation has now created a situation for them and some might say a more complicated one at that. They didn't seem to mind. They just cared. That's all we've wanted from the start.
I know you're wanting to hear the exciting news...I'm getting there! In this meeting Joeli was obviously discussed. Joeli's Song was heard. She is taking care of her baby sisters in a way that I cannot. I am so proud of my little girl! It was nearing the end of our meeting and the headmaster began to speak. He'd taken that Team JoMi flier before the board of education for our school. You see, each month our school focuses on one mission. October is breast cancer awareness, November is a food drive, December is metro ministries, etc...you get the idea. They teach our kids to love across the board. The headmaster and I had not discussed specifics on Joeli's death but many of you are aware that she left my arms in January of 2007. Guess what January is for my girls' school?! TEAM JOMI month! You heard me...it's true...my girl is being heard and it's all because of people like you! So...in preps for January each student will receive a newsletter in December with this blog address and information. In January students will be given the opportunity to order Team JoMi tshirts for themselves and also given the opportunity to wear them in awareness for my Joeli, my Brelan, my Mileigh and for everyone affected by any form of neutropenia. How about that for God huh?! I am in awe of the work that He continues to do with even a mess like me.
I am so thankful for the folks that have been strategically placed in the lives of my girls and in my life. He REALLY hears...even when we think He doesn't. So often I don't have the words and the words I do have fail but I believe He understands my heart even when it's not in the best of places.
I don't know why you're here, on this page, reading these words. I don't know if you have neutropenia or if you love a neutropenic. I don't know much but I know this...He loves you and He loves me and we don't deserve it but oh to see! Thank you for all you do. Thank you for supporting me in whatever way you can. Thank you for raising awareness and for helping this mama make a song heard that others meant to silence. He hears, He is able, and He is bigger! Be Blessed! Sing Loud!
I wasn't quite sure how to go about everything that neutropenia entails with these changes aside from what we already had in place. We do chronic illness letters, pull them both if illness presents in their peers, provide clorox wipes and hand soap, etc... So far, things have gone very smooth and communication has been above par from their teachers and school staff. I spoke with their headmaster shortly before school started because I wanted his opinion on how to go about these changes for both of them but especially for Mileigh. He was aware that we'd been to the family conference this summer and I filled him in on that trip as well as Mileigh's recent bone marrow biopsy. Part of that conversation led to us discussing Team JoMi tshirts. That tshirt fundraiser is what made that conference possible for my girls and I. He asked for a flier with info on them. We continued the conversation about Mileigh and where to go from here and decided a meeting with all staff involved would be appropriate.
Last week after school one day we had that meeting. Mileigh's teacher, Brelan's teacher, P.E. Coach, and Headmaster all in one room with one purpose...to keep Mileigh safe. In preperation for this meeting I thought I'd be intimidated...I wasn't. He heard there too! We gathered in Mileigh's classroom and there things became surreal. Here I was telling these people, who care about my little girls, about neutropenia! IMAGINE THAT! For so long, I've just wanted someone, anyone to just hear. Just hear what this is and how this affects our lives and how maybe just by knowing changes can happen. I have no doubt in my mind that those teachers and staff were divinely placed in my life and in the life of my girls. They listened to everything I had to say, even the hard parts. They asked questions on how they could help and even made suggestions. Essentially, our situation has now created a situation for them and some might say a more complicated one at that. They didn't seem to mind. They just cared. That's all we've wanted from the start.
I know you're wanting to hear the exciting news...I'm getting there! In this meeting Joeli was obviously discussed. Joeli's Song was heard. She is taking care of her baby sisters in a way that I cannot. I am so proud of my little girl! It was nearing the end of our meeting and the headmaster began to speak. He'd taken that Team JoMi flier before the board of education for our school. You see, each month our school focuses on one mission. October is breast cancer awareness, November is a food drive, December is metro ministries, etc...you get the idea. They teach our kids to love across the board. The headmaster and I had not discussed specifics on Joeli's death but many of you are aware that she left my arms in January of 2007. Guess what January is for my girls' school?! TEAM JOMI month! You heard me...it's true...my girl is being heard and it's all because of people like you! So...in preps for January each student will receive a newsletter in December with this blog address and information. In January students will be given the opportunity to order Team JoMi tshirts for themselves and also given the opportunity to wear them in awareness for my Joeli, my Brelan, my Mileigh and for everyone affected by any form of neutropenia. How about that for God huh?! I am in awe of the work that He continues to do with even a mess like me.
I am so thankful for the folks that have been strategically placed in the lives of my girls and in my life. He REALLY hears...even when we think He doesn't. So often I don't have the words and the words I do have fail but I believe He understands my heart even when it's not in the best of places.
I don't know why you're here, on this page, reading these words. I don't know if you have neutropenia or if you love a neutropenic. I don't know much but I know this...He loves you and He loves me and we don't deserve it but oh to see! Thank you for all you do. Thank you for supporting me in whatever way you can. Thank you for raising awareness and for helping this mama make a song heard that others meant to silence. He hears, He is able, and He is bigger! Be Blessed! Sing Loud!
Thursday, August 21, 2014
Loss Unspeakable...
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.
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.
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.
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.
I love you all heart, Joeli Lynn!!! You will forever be where I begin.
Sing Loud.
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.
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.
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.
I love you all heart, Joeli Lynn!!! You will forever be where I begin.
Sing Loud.
Tuesday, August 19, 2014
Celebrations Don't Always Go As Planned...
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!
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!
"For I know the plans I have for you,
Declares the Lord, plans to prosper
you and not to harm you, plans to give
you hope and a future." ~Jeremiah 29:11 (NIV)
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.
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.
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 www.gofundme.com/TeamJoMi 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.
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!
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!
"For I know the plans I have for you,
Declares the Lord, plans to prosper
you and not to harm you, plans to give
you hope and a future." ~Jeremiah 29:11 (NIV)
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.
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.
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 www.gofundme.com/TeamJoMi 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.
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!
Monday, August 18, 2014
Happy 11th Birthday, Joeli Lynn!
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"!
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.
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.
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!
Happy Birthday, Joeli Lynn!! You are one brilliant little girl who truly blessed this world!
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!
Tuesday, August 12, 2014
School Days and an Angel Plays...
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!
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.
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!
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!
Friday, August 8, 2014
BMB, HLA...Just Another Day!
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.
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?!
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!
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!
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.
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?!
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!
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!
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.
Brelan and MiBeth with Ronald McDonald himself at the house =).
My Neutrohero.
My brave Brelan!
Neutrohero!
Sweet sisters.
Ready to get this over with! New "lovey" for the O.R.
I adore this love! Such a sweet big sister!
HLA information.
All Done!
Wednesday, July 16, 2014
Bittersweet Meet...
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!
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.
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.
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.
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.
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!
Monday, June 30, 2014
What's Your Limit?
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 =).
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.
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.
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.
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?
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.
Sing Loud...I sing when I cannot speak...I sing when I cannot pray...I sing.
Be Blessed!
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.
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.
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.
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?
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.
Sing Loud...I sing when I cannot speak...I sing when I cannot pray...I sing.
Be Blessed!
Thursday, April 10, 2014
Just a minute...
I just need a minute.
A minute to be well.
A minute away from this roller coaster from hell.
I just need a minute.
A minute to be free.
A minute where Neutropenia doesn't define me.
I just need a minute.
A minute to breathe.
A minute to live worry free.
I just need a minute.
A minute that's new.
A minute with you.
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.
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...
Monday, March 17, 2014
Panic Stricken Randomness
I needed a place to go today
It's not supposed to be this way.
I want to hold you tight right now
and trace the beauty of your brow.
I tell them how you fought so brave
You're fighting now, even from the grave.
Brelan and Mileigh miss you so
God, why did she have to go?
I want to feel your sweet face again
I want to touch and breathe you in.
I don't know how to do this here
Here in this place of lies and fear.
You brought light in a darkened place
I miss that sweet smile on your face.
They tell me of their thoughts of you
The dreams they dream are never new.
They meet you when the world is at rest
It's then that they play the best.
I find a smile now and then
when I think of you with them.
Watch over your baby sisters please
Watch over them and watch over me.
Tell Jesus to scoop you up real tight
that's your mama hugging you tonight.
These tears that fall are not in vain
You, Joeli Lynn, are bringing change!
I love you sweet girl, All Heart
One day I'll be there and we will never part.
Until the day we meet again
Remind us every now and then.
I'll fight for you till my last breath
You're saving many from senseless death.
When night is still and silence so loud
I think of you and I am so, so proud.
So, these tears that burn my face tonight
Are adding fuel for your fight.
Goodnight sweet girl, I love you All Heart
Around the world
In the house
On the street
I even love
"your stinky feet" ;)
~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!
It's not supposed to be this way.
I want to hold you tight right now
and trace the beauty of your brow.
I tell them how you fought so brave
You're fighting now, even from the grave.
Brelan and Mileigh miss you so
God, why did she have to go?
I want to feel your sweet face again
I want to touch and breathe you in.
I don't know how to do this here
Here in this place of lies and fear.
You brought light in a darkened place
I miss that sweet smile on your face.
They tell me of their thoughts of you
The dreams they dream are never new.
They meet you when the world is at rest
It's then that they play the best.
I find a smile now and then
when I think of you with them.
Watch over your baby sisters please
Watch over them and watch over me.
Tell Jesus to scoop you up real tight
that's your mama hugging you tonight.
These tears that fall are not in vain
You, Joeli Lynn, are bringing change!
I love you sweet girl, All Heart
One day I'll be there and we will never part.
Until the day we meet again
Remind us every now and then.
I'll fight for you till my last breath
You're saving many from senseless death.
When night is still and silence so loud
I think of you and I am so, so proud.
So, these tears that burn my face tonight
Are adding fuel for your fight.
Goodnight sweet girl, I love you All Heart
Around the world
In the house
On the street
I even love
"your stinky feet" ;)
~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!
Thursday, March 6, 2014
"Neutropenia Makes Me Sick!"
Pun intended! My MiBeth feels like pure T trash right now and truth has never been more true than when these words define you. She has been fighting a cold for a few days now but it all went down hill Tuesday night. She has been miserable ever since. Low grade fever, sore throat, cough, and oh yeah...NEUTROPENIA! School was out Monday, Tuesday, and Wednesday of this week for Mardi Gras but Mileigh was home today too for Neutropenia. She will likely be home tomorrow too. I held her for much of today and we spent that time in pjs with Disney Jr. I swapped the laundry occasionally and fixed lunch etc but then was back on the couch with her. Her mouth is scattered with ulcers including her tonsils and she feels horrific. My heart breaks when Neutropenia rears its ugly head in such a way.
Neutropenia has so many titles that define it but this week, today, right now....Neutropenia is a THIEF! It steals much more than neutrophils. It steals life. It takes away energy and often smiles. It steals play dates and school days. It takes away our happy. It leaves us defeated and lifeless and that is a place I refuse to stay.
My friends often comment on my "strength". Today...I AM DONE. I AM OVER NEUTROPENIA. I am done with living life in a constant state of picking up the broken wreckage it leaves behind. I am NOT strong and I am NOT brave. I am weak and I am broken and I am tired. I was left standing in the ER ambulance entrance with empty arms and the air ripped from my lungs thanks to Neutropenia. I've had countless conversations with my toddlers with every effort to explain death and why their big sister isn't here with them. I've tried over and over to answer questions that should never enter their precious minds. I've spent the last two days holding my neutropenic little girl and praying over her. I've cried when she finally slept and begged God to heal her beautiful little body because this is something that Mama can't fix. I have poured out my soul right here and in any way that folks would listen so that this wreckage that is me isn't what others become. I have fought for children I do not know...maybe yours. Right now, right here, with sick neutropenic eyes fighting to stay awake beside me, I am undone. I don't understand why so many choose to look the other way. Can they not hear?! Do they not care about the child that may come to this diagnosis in days, weeks, months, and/or years to come?! Do they not care about mine?
Times like right now I know that I am weak. It is what it is. Neutropenia makes me sick! I do, however, hold on to a promise that I don't deserve. He is never defeated. He is never done with me. To be honest, those words are hard to type right now...I'm just broken and I just want my Mileigh to feel better. As simple as it sounds, it just isn't. I know that when I cannot speak He catches my tears and hears my cries. He knows. I believe there's a cure for us. Please pray for Mileigh. Pray for healing. Pray for pain relief. Pray for neutrophils. Pray for rest. Just pray because He hears. Peace out.
Neutropenia has so many titles that define it but this week, today, right now....Neutropenia is a THIEF! It steals much more than neutrophils. It steals life. It takes away energy and often smiles. It steals play dates and school days. It takes away our happy. It leaves us defeated and lifeless and that is a place I refuse to stay.
My friends often comment on my "strength". Today...I AM DONE. I AM OVER NEUTROPENIA. I am done with living life in a constant state of picking up the broken wreckage it leaves behind. I am NOT strong and I am NOT brave. I am weak and I am broken and I am tired. I was left standing in the ER ambulance entrance with empty arms and the air ripped from my lungs thanks to Neutropenia. I've had countless conversations with my toddlers with every effort to explain death and why their big sister isn't here with them. I've tried over and over to answer questions that should never enter their precious minds. I've spent the last two days holding my neutropenic little girl and praying over her. I've cried when she finally slept and begged God to heal her beautiful little body because this is something that Mama can't fix. I have poured out my soul right here and in any way that folks would listen so that this wreckage that is me isn't what others become. I have fought for children I do not know...maybe yours. Right now, right here, with sick neutropenic eyes fighting to stay awake beside me, I am undone. I don't understand why so many choose to look the other way. Can they not hear?! Do they not care about the child that may come to this diagnosis in days, weeks, months, and/or years to come?! Do they not care about mine?
Times like right now I know that I am weak. It is what it is. Neutropenia makes me sick! I do, however, hold on to a promise that I don't deserve. He is never defeated. He is never done with me. To be honest, those words are hard to type right now...I'm just broken and I just want my Mileigh to feel better. As simple as it sounds, it just isn't. I know that when I cannot speak He catches my tears and hears my cries. He knows. I believe there's a cure for us. Please pray for Mileigh. Pray for healing. Pray for pain relief. Pray for neutrophils. Pray for rest. Just pray because He hears. Peace out.
Friday, February 14, 2014
Vanlentines For An Angel
Hey y'all. I'd say "Happy Valentine's Day" but that might be a bit cliche'... These are the small holidays that are just fun when your kids are small. Don't get me wrong, there isn't a crafty bone in my body, but I love how happy my girls get over the small things. The small things have always mattered big to me. It's always just been who I am. I love homemade cards from my girls, pictures of our family thru their eyes, and anything that requires thought.
It's been a rather emotional day for several reasons. I'm thankful for friends who just know. We don't go all out for this day but we do try to make it special for our girls. Last night as I put out their hearts and candies in their respective places I couldn't help but think of three. Oh if they only knew how much they mean to me. I thought of Joeli and what her reactions would be as Brelan and Mileigh smiled back at me. Then I thought of His great love for you and for me. A love so big I can't describe and that's where my sweet girl resides. I can't imagine what Heaven must look like on Valentine's Day. I'm sure it's truly a sight to see. I wondered what she'd be doing up there, looking down on me with that Joeli stare. I'm sure her face would shine so bright, she truly brings new perspective to this life.
I wondered what I'd buy for her if I could. What do you give to an angel on Valentine's Day? I listened to Brelan and Mileigh give each other small tokens of love and wondered what it might sound like to hear them with her. I wondered what she'd say to her little sisters and how she'd show them how much she cared. I came back to "what do you give to an angel?" I'll give her my voice, I'll give her my fight, I'll give her a legacy full of light. I'll talk about her to her sisters and keep her memory alive. I'll remind them how much she loves them and show them how to shine.
Happy <3 Day Joeli, Brelan, and Mileigh!!! Mama loves y'all All Heart!
It's been a rather emotional day for several reasons. I'm thankful for friends who just know. We don't go all out for this day but we do try to make it special for our girls. Last night as I put out their hearts and candies in their respective places I couldn't help but think of three. Oh if they only knew how much they mean to me. I thought of Joeli and what her reactions would be as Brelan and Mileigh smiled back at me. Then I thought of His great love for you and for me. A love so big I can't describe and that's where my sweet girl resides. I can't imagine what Heaven must look like on Valentine's Day. I'm sure it's truly a sight to see. I wondered what she'd be doing up there, looking down on me with that Joeli stare. I'm sure her face would shine so bright, she truly brings new perspective to this life.
I wondered what I'd buy for her if I could. What do you give to an angel on Valentine's Day? I listened to Brelan and Mileigh give each other small tokens of love and wondered what it might sound like to hear them with her. I wondered what she'd say to her little sisters and how she'd show them how much she cared. I came back to "what do you give to an angel?" I'll give her my voice, I'll give her my fight, I'll give her a legacy full of light. I'll talk about her to her sisters and keep her memory alive. I'll remind them how much she loves them and show them how to shine.
Happy <3 Day Joeli, Brelan, and Mileigh!!! Mama loves y'all All Heart!
Monday, January 27, 2014
Time...
Hi there! My posts seem to come fewer and fewer lately. It's certainly not on purpose. Time seems to get away from me some days especially lately. The anxiety that comes with holidays and missing loved ones tends to take over here and there. January 18th was 7 years that Joeli has been with my Jesus. At times it seems like just yesterday I was scooping my little girl up and wrapping my arms around her and other times it seems like 100 years since I heard her sweet voice and smelled her hair. It's difficult to explain how in the same breath it feels like yesterday and then so long ago too.
Last year at this time I was launching this blog for the first time. I have been amazed at the response. It's because of you that people hear Joeli sing. It's because of you that I find encouragement. I know how hard it is to be on your side and how often you fear saying the wrong thing. I have found strength here. Your comments, your stories, even your struggles that you share with me have brought me to this place in time. Thank you.
So often we hear that time heals all wounds. I'll say that's a bold faced lie. I've lost many that have been close to me including a parent. Time often dulls the ache and creates a new normal but it doesn't "heal". 7 years later and the death of Joeli, my first born, is just as searing today as it was on Jan. 18, 2007. I can't replace those memories or that hurt. Time has given way to awareness. It has provided situations and circumstances for me to share her and to help others. It has given me perspectives I never wanted to know. It has also stolen from me that which I'll never get back. Oh, how I miss my baby. I know she wouldn't be a baby anymore...she'd be my 10 year old 5th grader but time took that from me.
Time, along with the cruelty of this world, have taken much. However, there are things it can never take. It will never take away my security in scooping her up at His Feet on that glorious day that I walk thru His gates. It will never take the closeness that I have with her to this very day. It will not touch the bond she has with her baby sisters and it will not take her song. She won't be silenced for as long as there is breath in me.
Late last week my family battled illness and while resting MiBeth came to me. She came with a familiar randomness, that defines her, and said "Mama, I wish Joeli could walk me to class". I questioned my own ears and said "what, baby?". She knew exactly what she'd said and repeated to me "Mama, I wish Joeli could walk me to class but she can't.". With big alligator tears she waited for my response. How do you respond to that?! I swallowed, hard, and said "My sweet girl, your friends might not see your big sister with you but I promise you she is with you always. She walks with you every day just like Jesus does and don't ever believe any different". She, being 5, was satisfied with my answer and simply said "ok, Mama". There are times that I wish I was satisfied with His answers for me. He tells me and I know that He knows better than me. He tells me that His timing is perfect. He tells me that all things work together to glorify Him. I know all of these things and I do believe them. Often, it's hard to find comfort in these things when He's the One who holds my little girl. I have to remember that in His time I will be healed...so maybe time does heal. Just not in the way we define. I believe this is true. It leaves me clinging to a verse that I learned a long time ago but have recently found new meaning in.
"Now faith is being sure of what we hope for and certain of what we do not see."
-Hebrews 11:1
Be Blessed!
Last year at this time I was launching this blog for the first time. I have been amazed at the response. It's because of you that people hear Joeli sing. It's because of you that I find encouragement. I know how hard it is to be on your side and how often you fear saying the wrong thing. I have found strength here. Your comments, your stories, even your struggles that you share with me have brought me to this place in time. Thank you.
So often we hear that time heals all wounds. I'll say that's a bold faced lie. I've lost many that have been close to me including a parent. Time often dulls the ache and creates a new normal but it doesn't "heal". 7 years later and the death of Joeli, my first born, is just as searing today as it was on Jan. 18, 2007. I can't replace those memories or that hurt. Time has given way to awareness. It has provided situations and circumstances for me to share her and to help others. It has given me perspectives I never wanted to know. It has also stolen from me that which I'll never get back. Oh, how I miss my baby. I know she wouldn't be a baby anymore...she'd be my 10 year old 5th grader but time took that from me.
Time, along with the cruelty of this world, have taken much. However, there are things it can never take. It will never take away my security in scooping her up at His Feet on that glorious day that I walk thru His gates. It will never take the closeness that I have with her to this very day. It will not touch the bond she has with her baby sisters and it will not take her song. She won't be silenced for as long as there is breath in me.
Late last week my family battled illness and while resting MiBeth came to me. She came with a familiar randomness, that defines her, and said "Mama, I wish Joeli could walk me to class". I questioned my own ears and said "what, baby?". She knew exactly what she'd said and repeated to me "Mama, I wish Joeli could walk me to class but she can't.". With big alligator tears she waited for my response. How do you respond to that?! I swallowed, hard, and said "My sweet girl, your friends might not see your big sister with you but I promise you she is with you always. She walks with you every day just like Jesus does and don't ever believe any different". She, being 5, was satisfied with my answer and simply said "ok, Mama". There are times that I wish I was satisfied with His answers for me. He tells me and I know that He knows better than me. He tells me that His timing is perfect. He tells me that all things work together to glorify Him. I know all of these things and I do believe them. Often, it's hard to find comfort in these things when He's the One who holds my little girl. I have to remember that in His time I will be healed...so maybe time does heal. Just not in the way we define. I believe this is true. It leaves me clinging to a verse that I learned a long time ago but have recently found new meaning in.
"Now faith is being sure of what we hope for and certain of what we do not see."
-Hebrews 11:1
Be Blessed!
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