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"

18 comments:

High Desert Diva said...

Oh Sarah...

I am bereft of words...

Michelle said...

Sarah, I am so sorry. What a terrible ordeal for you to go through. I can not imagine your pain. And it sucks how there are so many 'anniversaries' marking each date when you lose someone you love so much. The crying is good... it feels terrible at the time, but it's releasing the monster. The monster likes being inside you and making you hurt. So when you cry and grieve, the monster kicks and fights not to be let out, and that's why it feels bad. But, as you know, you feel better afterwards.
You are such a strong person, I am realizing it now, just with the fact that Peter has been so sick all his life... it must have been (and still is) terrifying for you after what you went through with Jillian.
She sounds like she was a beautiful person, and she is very lucky to have you as a mommy.
XOXOXOX

Unknown said...

I can't imagine your pain and the pain your family has endured. Thank you for sharing this story with us!

Tricia said...

Sarah,

I'm so glad I know you in person.

You are amazing.

Corinne said...

Yeah, I don't know you. I saw that you had given Tricia an award so I stopped by and here I am, crying over your pain. Thank you so much for that sincere story. I like your blog :)

Schofields said...

I almost feel like that was a heads up... I am so VERY glad that you got to hold her, smell, her, and touch her soft cheeks!

What if's aren't fun. Don't know if it helps, but I am comforted that my little girl will have friends & family to greet her when her turn finally comes!

Love you crazy strong woman!
Diane

Double D said...

Many hugs and warm prayers out to you and your family, dollface.

Distressing Delilah a.k.a. jenn said...

I am sorry for the loss you had..but happy you were able to know her as you did, so she knew love!

Rosebud Collection said...

Sorry to read this Sarah..I miscarried my first at 4 months..but a big difference from going the whole term and holding the child..My feelings on my loss..I have a angel waiting for me..

Holli said...

I know how you feel Sarah as that month of sadness is July for me. We have talked about having this sadness in common before so I knew when I hadn't heard from you in awhile it was your sad time. I like to be left alone in July too when I'm going through it. Thank you for sharing her story with us here on this blog....I cried for you and your family while reading it. And remembered my daughter too.....thank you for that. Its nice to think about her......

The Mom Jen said...

oh Sarah, my heart aches for you!

Jolin said...

I cannot even begin to understand your heartache, but I have learned that it is better to say something than to say nothing at all...

I am so sorry that you have had a tough week.

Hey Harriet said...

I was so sad to read about your loss Sarah. I cannot begin to imagine what it would feel like to lose a child. xo

I popped into your blog the other day & read this post, but unfortunately I'm not always able to leave coments on your blog from my silly home computer for some reason & have to wait until I'm at work before I can visit again & say something...

Take care!

Unknown said...

Sarah - I am catching up on my blog reading and your story touched me. I just wanted you to know that.

God bless!
~gloria

Jennifer Juniper said...

Oh, Sarah...how brave of you to write this post. I hope it brought you some peace as it does for me to get it out on "paper"

tatsuko said...

I don't really know what to say, except that I had to say something... Thanks so much for sharing this. Peace to you and your family.

Arty Allsorts said...

I have no real comprehension of the pain/sorrow/loss you must feel at this time as I don't have children but my Sis-in-law had a miscarriage quite late on and I know she goes through something similar every year so I know I'm late but have some {{{hugs}}} from me and I hope it eases a little more over time for you.
Love
H
xx

Kristina said...

I still cry for her too. She was the sweetest little thing and I can't wait til you get to hold her again.

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