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!
Monday, September 8, 2014
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!
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