Friday, September 19, 2008

Jillian

Ok so the past few days I have been MIA from blogging.
I just have had a rough couple of weeks and needed a little mental break to just stay in bed and cry for a little while.

September 4th was my daughters 10th birthday.
September 18th (yesterday) was the 10th anniversary of her death.

Not a whole lot of people really know that Charles and I have a daughter as well.
Her name was Jillian. She had Trisomy-18, or Edwards Syndrome. Trisomy 18 is a rare chromosomal defect, causing the cells of the body to have an extra 18th chromosome. So instead of having two, she had three. This is a fatal condition. We did not expect her to survive delivery. She lived for two weeks. She was the joy of our young married life, and even to this day love her as much as we did then.
She was born at 39 weeks weighing in at 4lbs 2 oz. She was only 17 inches long and the preemie clothes we bought for her were too big. Even those teeny tiny socks were like giant combat boots on her. She was beautiful.
We knew ahead of time that she had this condition. We knew she would be blind, deaf, club foot, and severely mentally retarded. They told us she wouldnt be able to suck or swallow. But she did. They told us to spend time with her after she was born because she wouldnt survive the night, and what would we like to do with the body... She went home the next day from the hospital eating, pooping and doing "baby things".
But our joy was short-lived. We knew it was only a matter of time before her body would stop understanding the messages her brain was trying to send. She started having apnea and seizures.
the day before she died I prayed that I wouldn't have to be the one there when she passed away.
I prayed that God would help me cope. I begged that it would be quickly and quietly.
The next night Charles got up with her at 1am to feed her. She ate. She opened her eyes and looked at him and passed away calmly. He came in and woke me up and said 'I think she is gone". It was so peaceful compared to the awful brutality of the apnea and seizures. It was exactly as I had prayed for.

She was buried in Colfax, North Carolina 3 days later.

For a year i cried. I didnt go to church. I visited her grave regularly. I cried some more.
I looked through her little basket of clothes and her scrapbook. I hated the new moms at church with their perfect babies who walked on eggshells around me. Their babies would start crying and they would give me a scared look, like i was going to go apes*** and take out the entire congregation with a bazooka. It just wasnt worth it. I hated life.

The second year was a little easier. We had moved. We had new jobs that kept us busy and a week after the 1 year anniversary I found out I was pregnant again.

It has been 10 years. I still cry occasionally. But it gets easier.
The pain never completely goes away, but it does get easier to deal with.
We dont find the need to visit her grave as often. in fact we find that a few times a year is sufficient for our family.
The boys know all about their sister. They know she died. Finn will use that as a shock tactic to get people to feel sorry for him. It is actually kind of funny.

Occasionally something out of the blue will take me by surprise. At Christmas we were decorating the Christmas tree. Charles picked up an ornament from out of the box and unwrapped the tissue paper. It was her dove ornament that the hospital gave us when she died.
He broke down crying. He hadnt suficiently prepared himself emotionally to see it.

Every September a gloom and stormcloud descends, usually directly over my head, and it really hits.
So to quote Greenday, "Wake me up when september ends"
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