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!
