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I didn’t plan on having my 11-year-old daughter’s birthday party the
same day as I buried my baby girl, but life never turns out exactly as
you planned. My life would still not be perfect if “Hope,” my baby, had
lived. In truth, it would have been just as crazy--if not more so, since
babies can make life crazy.  I would have taken crazy if I could have. I
cannot say why she had a rare form of spina bifida, despite my taking
all precautions. I also cannot say, “Why my baby?” because then I think,
“Why anyone’s baby!”

I’d never even heard of “exencephalic,” and not many others have
either (as I have found when trying to research the condition). My lack
of knowledge does not change the fact that Hope’s brain was destroyed by
the amniotic fluid--the same fluid she could not have lived without.

The rest of her body was perfection, even down to her tiny
fingernails. Without a brain that works, there is no feeling, thought,
or life, they tell me, even if her heart is beating or her body is
moving. That was hard. Feeling the moving of life inside of me that had
felt so wonderful and alive for months, now made me ache--a kind of ache
that goes too deep.

When I mourn for Hope, it is not because I wish she could experience
heartache and trials, but because I wanted to worry about her the way I
worry about my three living children.  Yes, I have three great
children.  I should not ever complain.  Selfish of me.

Hope has it made.  She was able to get her body and never experience
some of the horrors others face in this life. Our family has a reminder
of where we want to be. There is a different appreciation for my living
children I cannot explain. My beliefs help me. Experiences that are
sacred and peaceful to our family--Miracles!

I look at life differently. Other people often open up to me during
sad times. I learn many things about people--what they have suffered
that I never knew. People can amaze! Many have worse experiences. I am
grateful for Hope. I am excited to get to know her. I really pray I will
live so I can. I have been so blessed.

-Hope’s Mother