February is a month for awareness about heart disease. Heart disease in women, heart defects in infants, etc. You've seen me post many things about donating, to please wear red, pictures of our journey to hopefully have you remember that this road isn't easy. That's part of me...to bring awareness. Awareness = caring = donations = research = lives changed.
The other part of me wants nothing to do with it. Count me out. Some days I feel angry that I'm even in this category. One organ is effecting my beautiful little girl. One organ made my pregnancy stressful and not blissful. One organ makes me stressed to finish our family. One organ made me miss a lot of her babyhood. It's a sadness I've been dealing with lately. One organ made me not be able to breast feed her. One organ made her have crap on her face her whole babyhood. One organ made me not sleep with her every night..she was at the hospital, I was at the condo. One organ made us quarantined and miss out on summer, fall, winter, and starting to be spring.. One organ makes me feel her hands and feet, mentally remember how much urine output she's had today, check her heart rate and saturations daily, look at her coloring, fear after every vomit...I feel robbed by CHD. Sometimes want to feel naive and live like I don't know. I don't like this reality. It's a mean reality that never goes away.
Sometimes reading other heart blogs or looking at other kids pictures makes me fear for her. 99.9% of heart moms are a little negative about their child, almost like they are waiting for the ball to drop or watching a "dying" child. I can't and won't live that way..it's not good thoughts for me. It's not fair for her, she has no choice on her life. She's ours and I'm her biggest cheerleader for an AWESOME and full life.
Knowing we can't have a transplant in this science age (that's why we need research funding and fast)...this heart is all we have for now. I can't live like it's a car speeding into death. I won't. I trust The Lord with our lives, he turned our last hopeless situation around.
Sometimes I want to sit down with those moms and say "all your other children are dying kids" all completely healthy people are "dying people"...why live like you are an exception? Nobody told you when your healthy child was born that they get 95 years or 10, it's not your answer to know. Your mind thinks the two are seperate, were all dying people.
There will be nothing I tell London she can't do. If she wants to play a sport...go right ahead. When we were pro life in utero, we are pro life out of it.
February is a double edged sword for me..we desperately need awareness and research but part of me doesn't like the category that puts me in. Call it rude if you will..it's how I cope with it. Please donate, know that these kids are 1 in 100. It's a brutal reality and one I care to fix but also wish I could toss. Xo
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