however distant

Yesterday I had to take Eloise to a pediatric specialists to check for pneumonia. She has been the picture of misery. Fevers, runny nose...I have referred to her as 'the banshee baby' lately. Mercifully, no pneumonia.

It has been brought home to me time and again that Eloise's body did not come to earth prepared for life. Being born without an esophagus is not a quick fix. Reflux interferes with every aspect of her life. She's can't sleep without being woken by bile and spit coming up her throat, nose and mouth. The way she handles her body, she sits so straight and erect without turning or twisting, is dictated by reflux. Her quality of life...just isn't what I would hope for any child of mine. So when folks say, "But aren't you glad for modern medicine?" My truthful answer is, "Its a mixed bag, baby." If modern medicine hadn't intervened, I wouldn't have to see the terror Eloise gets when I have to put her down on an X-ray table and walk away.
Being witness to my child's suffering - what feels like pointless suffering - is the worst thing I can imagine enduring. I have wrestled with this before God. Why does she have to do this? Why do I have to do this? Why is life so important? I'll be honest, I've never been afraid of death, but at this point, death just seems like rest. A rest from suffering, which is something I cannot give my child despite my best efforts.

After many prayers, this was my answer: There are lessons one can only learn on earth, with a mortal body, and Heavenly Father wants us to learn those lessons. My retort: I would rather be selfish, ignorant and happy than wise, empathetic and miserable. I am sure Mother Eve felt the same way, and perhaps even uttered the same prayer. Probably when she felt her first labor pain, right?
I just have to get Eloise through tonight. When she cries, go to her and help however I can with this horrible reflux. I have to love Josephine, Amelia and Hazel. I have to make meals. We just have to get through this, and hope for better times in the future, however distant that may feel.

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