When we found out we were pregnant, we were both excited and nervous. We wanted a baby, but were we ready? Over the next nine months, we dreamed about our new life as parents. The baby would be born in January so I was over the moon about next Christmas with an almost 1 year old. We prepared a nursery, we panicked about not having enough clothes for her. And at the end we just waited as patiently as we could for her arrival.
When she was born, we didn't know right away there was a problem. She passed all her tests in the hospital and for the first month of her life, we thought we had the perfect baby. She slept in her crib, she was easily satisfied when breast feeding, and she was so very cute. Then the crying started. At first we thought, babies cry. But it was constant. Suddenly getting her to eat was challenging, getting her to sleep was impossible.
After a trying medical journey, we learned our daughter was born with a small head/brain or microcephaly. During her feeding difficulty, she had fallen completely off the growth charts, head, weight and length. She also has a neurological irritability that caused the excessive crying. But that's about all we know. She doesn't have a specific syndrome that would cause the microcephaly and so far, that seems to be the extent of her challenges. She could be nearly normal or she could have severe mental disability. We won't know where she will land until she does. What we do know is she is a fighter, and we will fight for her.
Our daughter has her own blog dealing with the story of health crisis. This is my story, my path to understanding our a-typical child. There is grief when you find out that the life you spent a year dreaming about is gone and there will be challenges in your child's life most parents will never face. There is also unexplainable joy when your child masters a new skill or expresses a new emotion.
Eloise takes up the majority of my time, 24 hours a day but she sleeps much better now. So while she sleeps, my time is mine. I find myself lost in questions about the future, daydreams of the past or sometimes I just watch my little warrior sleep.
