The name of the leukodystrophy is Krabbe syndrome. I felt very devastated when we found out. The prognosis is death before the age of two.
It has taken me a few days to restore my faith. Despair, sadness and grief seized me in their tenacious grasp and I fight to be free of them. I'm not certain why the opinion of this doctor was able to shake my beliefs- perhaps it is just my fear of failing my baby- of failing to succeed at healing Anaya.
Since then I have had several realizations:
1) I do not have any control over the destinies of others
2) miracles have happened all over the world which are unexplainable
3) death comes for all of us when it is time and our purpose is fufilled
4) my fear of death is actually my fear of failing at something that I have absolutely no control over.
5) I believe in the miracle of creation and a higher power.
6) having faced these realizations I have mastered my fear and can move forward with love and faith and pray that Anaya will be a miracle baby.
I do not yet know how to approach this topic with Solara, although in retrospect, perhaps I shall relay to her a version of what I've just said. It may be a few days before we get out of the hospital and I get a chance to talk to her. I hope to inspire love and not fear in her heart.
Although this news is emotional I ask you- do not despair! Anaya has been doing alright and continues to need your love and prayers. She is my little love and on her behalf I say rejoice in the moment of now. See the beauty in the little things, never give up, and confront your own feelings about death so that you can enjoy life even more.
I still believe she can heal.