Hey Y'all! Please take a minute and listen to this song. As I mentioned yesterday, lately I've just felt run down and just plain exhausted and emotional. I chose this particular part of the lyric for the title because it really speaks to me. Music is my language when I have no words. I want that for "Joeli's Song"! I want her song to rise and be heard and to make a difference in the Neutropenia world and in the lives of children and adults currently living with any form of Neutropenia. It's overwhelming to think about, truth be told. I have lyrics for Joeli's physical "song" and I want them edited and put to beautiful music and I want to sing them. I plan to do this with the help of a friend or two but the emotions involved in those lyrics take my breath. Some of those lyrics I wrote days after she left my arms. To go back to that place causes my chest to feel heavy, my heart to ache, my throat to burn, and my arms to physically hurt to this very day. I want to write! I want to write things that I don't currently have words for! I want her story to be heard so that it NEVER becomes the story of another soul affected by Neutropenia. I want all of these words, thoughts, and ideas put on paper and in one place. Can you see why I'm "worn"?! haha... I'm pretty good at figuring things out... Monday I taught myself how to change the head on the weed eater and add line! Three hours later my backyard was weed free and in the midst of it all it never occurred to me to wear pants in place of shorts! Needless to say... I have now figured that out too, a few nicks and scratches later! (You can laugh...I'm ok with that!). I mention the "figuring things out" bit because you'd think I'd be fine when it came to editing my lyrics or seeking publishing opportunities for a book but for whatever reason I'm not. I'm completely overwhelmed. Maybe because I want it to be perfect and maybe because I'm slightly OCD! Some of you who know me may disagree with my decision to use the word "slightly" LOL. That's ok too...especially considering I have to approve your comments before they post =D. All of this said, I often find myself worn. I find myself on my face at His feet. I find myself breathless from the constant struggle to keep on keeping on. This is where music comes in for me. When I'm in this worn condition, I'm often at a loss for words. Imagine that! Music and writing speaks to my soul in a way like no other. At times I find myself singing right by myself and it feels so real I promise I hear her. That may sound silly but to me it's just His way of saying "she's ok, Mama". I have no doubt that it's her I hear...just as I have no doubt that it's Him I hear. He is bigger than this world and anything it has to throw my way, death included! Are you worn? He hears...He knows...He holds and heals! I love y'all so much and I appreciate your encouragement after yesterday's post. Please don't ever hesitate to comment or contact me in any way with your suggestions or questions. It makes my heart smile when I hear from you! Be Blessed!
Do you ever feel like you can't really catch your breath? Like you just need a second to catch up... Life for my family has been pretty hectic lately thanks to softball and celebrating the births of 2 of my sweet girls. The last few days I've found myself missing Joeli so very much. I don't have an explanation of why or a trigger that caused it...I just do. I often wonder what she's doing, what she looks like, sounds like, and even smells like. She MUST smell like Jesus. I'd give anything just to be able to have a "hall pass" into Heaven. Surely those aren't allowed because if we had them, we'd never leave. It's times like these that I cling to what I know. I cling to what I believe. I don't always get it right... who am I kidding... I rarely get it right. I'm drawn back time and time again because I know that I know that I know that He loves me. I suppose maybe, in a sense, we do get a hall pass here and there. Those brief moments when our faith shines thru and we don't struggle so hard to see. The times when we blink and see clearly. I saw a new Hemoc last week, speaking of clear moments. It was refreshing to be heard for over an hour by a physician who didn't know me from Adam. There was genuine interest and concern in that appointment. I am cautiously excited and looking forward to my next appointment. I feel somewhat scattered as I type. I began this post thinking "I just need a minute to breathe" when in reality that's exactly what this was. He shows up when I step back and let Him. I'm reminded as I look at the clock that it's almost time to go pick up Brelan and Mileigh from school. I wonder if they need a hall pass too. Maybe they just need to know that I'm proud of them and that they are good kids who's "best" is enough. We get so wrapped up. I miss my sassy Joeli but I'm quite sure some of these Divine appointments are scheduled with her assistance. I smile when I think of possible conversations between God and Joeli. They are tag teaming me =). I've dreamt of her lately. I just needed to see her. That need drives me to His feet, a place where we all meet. A hall pass... Maybe I just needed to look a little harder. It was here the whole time. I apologize for this scattered mess I call a post. I'll take a pass today ;). I truly appreciate your prayers and support.
Hi there! Been a while.... I know, I know. Softball season is in full swing and both Brelan and Mileigh play. I coach their team and play for my church team as well so to say we are a softball family is an understatement. I've often been asked how I stay so active while living with two chronic illnesses. Cyclic Neutropenia surely throws a kink in things from time to time and occasionally so does Fibromyalgia. I remember when Joeli was little, and I'm not sure where or who she got this from, but she'd say "Dats how I roll" ha ha. She was a character. I felt like it made for a perfect post title. As neutropenics, Mileigh and I live with a certain degree of pain on any given day. My goal as a parent is to teach my children to persevere. There are definitely times that rest is required. There are times that we have to "take it easy"... For the most part though pain is pain. We can sit and hurt OR we can participate and hurt. Fatigue comes with the neutropenic territory. It also comes with the GCSF territory and the Fibromyalgia territory...well dang LOL! I do have days where I just can't go but most days I just push through it. I work out when I don't feel like it. I play softball when I don't feel like it. I take my girls skating when I don't feel like it. Normally once I get out there in the middle of it all I'm fine. The hardest part of working out is putting the tennis shoes on and the hardest part of eating right is ordering the healthier option. Once you're on the elliptical or eating the grilled fish you're fine and you soon realize your body is thanking you. I've always been an "on the go" person, maybe that's in my genetic make up too... who knows. I do struggle with soreness on a regular basis be it from work out routines or illness. By the end of the day my bath tub is typically screaming my name and the hot water soaks truly help relax my body enough to sleep. I see a chiropractor twice a week if schedules allow and that helps tremendously. I also do massage therapy when I can arrange it but once a month would be ideal. Insurance companies should really check this stuff out! It's better than being medicated that's for sure. I say that, about insurance companies, because mine doesn't cover massage therapy and minimal chiropractic care. I don't want it to sound like my opinion is that you should push yourself too hard. I do, however, think that for those of us who are affected by Neutropenia or any illness that takes our strength that we are required to evaluate ourselves more often than not. Our bodies will gladly shut down. I know, for me personally, I have to push my body to a degree otherwise I'd get stuck in some random pose and never move again. Some days illness wins. Most days, this is just how I roll! Britt-1, Neutropenia-0! We are not promised tomorrow. I know that all too well. I want to make today count. If I push this body of mine to be healthy then I'm going to be "Mama" for a really long time and that makes my heart smile! If I teach them to push their bodies to be healthy and active then one day they'll be "Mama" for a really long time too and I feel like I owe them that. If I try to live right and seek His face even when I fail miserably they'll see. More importantly, He'll see. I want them to have the tools within themselves to do the same and who better to give that to them than their mama?! Today my sweet Brelan turns 7!! So I did all her chores and no homework on Wednesdays and no ball! So this afternoon we take a break and celebrate Brelan! She is often mistaken for "the oldest"... she knows she isn't. She knows exactly who she is and who her big sister Joeli is and I couldn't be prouder. I'm one blessed mama! I've said it before but I say it again: Joeli made me, Brelan saved me, and Mileigh sanctified me! Be Blessed, y'all!
