I have a heavy heart this morning. Three of Zoe's Heterotaxy brothers have passed in the last two weeks, EJ, Austin, and Jayson. It's so hard not to tear up and feel empty when you hear this. I feel as if I post a heterotaxy death every month. Since I've been apart of the The Heterotaxy Network (and all of the kids pages), I've become close to some of the moms. We email regularly, check in on each other's kids because it seems as if its a domino effect. One child is heading to the ER, surgery or hasn't left the CICU for some time. I can't help but have a constant fear or have anxiety about Zoe's condition, especially since our hospital stays seem so frequent.
There hasn't been enough research done on this condition. Each child is different from the next, but we all share a common bond as a Heterotaxy parent. We all can relate to each other's fears, the unknowns, constant re-diagnoses, or new conditions that may pop up. Being asplenic or polysplenic is extremely scary (at least to me) because the child can't fight off illnesses or viruses without medical attention.
There are still some of Zoe's buddies in need of prayers and support. Some of them are still in the hospital. I hope my words make people realize that when your child is teething, or has an ear ache, or your house is a mess, you all are extremely lucky that these are the only things you have to worry about. Sometimes it takes all my might not to snap at someone on facebook or in conversations when they are complaining about something. I know that I'm extremely thankful that Zoe is here with us. I know when we say Grace on Thursday afternoon, I will be thanking the man above for allowing Zoe in our lives (gosh I'm tearing up right now). Although this year has been extremely grueling, stressful, emotional, draining, we would go to the end of this earth for Zoe. This little girl melts our heart. She exudes strength and happiness. She is our world.
Happy Thanksgiving :)
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