Last night I wanted to write about something that happened with Amelia but did not think it appropriate to rain on Tom's parade.
So here goes.....
While Scott was cleaning up after dinner last night, I began the nightly ritual of preparing Amelia for the shower. I need to undress her and assist her to the shower chair and then personally shower her. Scott then comes and dries her and puts her PJ's on.
Last night brought the usual stumbles and lack of balance. The swaying and sometimes falls are standard.
But last night something happened that broke my heart.
Amelia began crying.
She said angrily "I hate A-T. I wish I didn't have it. I just want to be normal".
She said it over and over again.
Scott came down and all we could do was hug her.
Hug her and tell her it is ok to feel like that.
We have not heard her say it for a very long time.
We have not seen this frustration, sadness and anger in ages.
We let her cry and let out all of the pain from within.
What else could we do?
Another extract from the book.......
The colic did not take long to begin. The night after we come home from hospital actually. Horrible screaming and arching of her back. This little baby was in so much pain and no one was able to stop it happening. The memories of standing in her room and rocking her. Holding her against me and trying to soothe whatever was causing so much pain. Scott would go to bed and struggle to imagine how the baby and I would survive the night. Mentally, I would take myself to another world and just switch off from the actual one. I could not put her down because I did not want her to suffer this alone. My role as her mother was to protect her and that did not mean placing this tiny body in a cot and walking away. “It will stop soon” the doctors kept saying
At 4 months of age it did stop. I will remember the day forever. Amelia was lying on a triangular pillow on the floor. It was next to a window and the sun was shining in brightly on the room. As the daily jobs were now something that was my only life, I was busy around the house. In a moment “IT” happened and has never gone away. I walked past our baby and she arched her neck to look at me. As I looked into her eyes she gave me the biggest smile that melted my heart. My feet stopped and I sat beside her and began looking at her in a way that a mother should look at their child. Her eyes and her smile felt like a comfort liquid flowing all around my body. That is the day that I learnt the saying “I would die for you”.