Amelie Update

Amelie is not doing so great. She's starting to swell. She has mild edema on her hands, feet, abdomen, and her bone flap (the area on her head where surgeons removed her skull after it became infected) is starting to puff up a little. She cannot breathe on her own and without oxygen. 

We're not sure what this means. Doctors don't have any answers. One thought is she's getting too much water, but the other thought is ominous and scary: that maybe her body is beginning to shut down. Edema can be a sympton of that. She seems miserable when she's awake, her little brown eyes are red, watery, not clear or bright anymore.  She needs oxygen 24/7 now. We have her on all the machines all the darn time. She stopped having seizures, until today. I can see it on the nurse's faces, She's declining. I don't want to even write it, but I'm not going to be in denial nor keep the truth from those who love her. I feel a sense of foreboding that disquiets my nerves.

This is when PRAYER needs energy, strength, passion. My grandmother, a woman I adored my entire life and whom I miss every day with all my soul, used to tell me, "Pray with passion dear." She had a certain distain for apathy. and, not surprisingly, so do I.  Hence, my prayers for a miracle, however foolish and naive, are stronger than ever. I have not given up faith that something amazing will happen. it will probably be in a manner I'm not picturing, but I know it's there.

I want to say she's talking. I have dreams she's talking to me. In yoga, I meditate on the vision of Amelie and I, sitting up in her new daybed, one made for bigger girls, laughing, me brushing and braiding her gorgeous, long locks. People text me all the time, "I dreamed Amelie sat up and started talking!" I, too, dream it.

Hubbs is breaking down. He can't witness her like this anymore. the only respite [he feels] she gets is in the hot tub. However, since she can't really breathe on her own anymore, those moments must be hastened.

I am stuck on the quote by Pema Chodron, "Nothing ever leaves you until it teaches you what you need to know." So I don't numb myself because I want to be OPEN and AWARE of what the universe is trying to teach us through this. But holy shit this is heavy. 

I have no more information, no more answers. We're not taking her back to the hospital. They've made it clear there's nothing they can do. Now keep in mind, Amelie may very well pull out of this slump. She's done it before. She's baffled doctors for years now. Why not now? This disquieting weight I feel may just be the accumulation of journey riddled with torment and tumultuous burden. Like the Hubbs said today, "we are in the tortuous unknown of undiagnosable disease."

Someone also said to me, "She's in God's hands now." I thought to myself, she always has been.

today I'm going to love on her and kiss her swollen chubby face.  Aside from keeping her comfortable and help her breathing, that's all we can do.