Long time no see!! Things are definitely crazy in our family this summer. From softball to home improvement projects. We are currently guests in Chad's parents' home while work is being done in our home. Hence, my time to write =).
About "violation"... I'm aware that's a pretty broad topic but for this post, the word "violation", will be in regard to our own bodies. I find myself feeling violated by gas prices, cost of living, medical professionals, etc. Recently I've even felt violated by my own genetic make up, both as a neutropenic and as a parent of a neutropenic. Don't get me wrong, Mileigh and I are doing well. GCSF is working and we live a "normal" life, for lack of a better word. That said, the violation is still felt from within.
Our busy schedules and active lifestyle often comes with a heavy price. At the end of the day my body is revolting. During our nadir that revolt is extreme. The sun sets and girls are bathed and tucked in and I finally find my tub. When the softball games are called and the dirt is washed off and all is quiet, this body screams. The soreness and tiredness is more than a "good hurt" after a workout. It's a hurt that just can't go any more. So, I fall into bed long after my sweet husband has slipped into his dreams and my girls have said their prayers. I find a place of stillness and pray myself to sleep.
Mileigh is often that child whose second wind comes with a vengeance. I've grown to love that about her. It's a familiar place that I have just recently put my finger on. We've called her "Sassafras" since she was small and I've always said she'd need that sassiness one day. There are many nights that Mileigh crashes. She goes until there is nothing left and she passes out. You'd think that would be a peaceful and restful place but it's short lived. She reminds me of an infant who has been over stimulated and become over tired. The sleep is interrupted. She cries out for me and I know all too well why. She is too tired to fully rest, she is too tired to sleep soundly, and she is too tired to escape the aches of fatigue. This, my friend, is Cyclic Neutropenia at it's finest. This, is violation by genetics.
Our natural instinct is to remove ourselves by any method possible in the event of being violated. How do you remove yourself from your own body? It's not possible. It's a constant internal struggle and the end result is complete exhaustion. I can't prevent these invasions. I can't take away the feelings of being violated. I couldn't for Joeli, I can't for Mileigh, and I can't for myself. I can however deal with these invasions by structuring our lives, resting when we need rest, and being sensitive to what our bodies say we need.
I fully believe that one day there will be a final defeat for Neutropenia in all it's genetic forms. It's important to share what we know, who we know, and what we live for this purpose. Be heard. Take action when your genetics begin their violation. Listen to your bodies.
Thank you for supporting my family and I. Thank you for sharing Joeli's Song! Thank you for making her be heard.
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