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Messages - martc70

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Child Loss / Re: Where is everyone from?
« on: July 01, 2010, 09:54:37 PM »
We live in Arlington, Texas.

Child Loss / Re: My girl
« on: June 19, 2010, 11:17:54 AM »
Hannah was born three months early.  She weighed a pound and 7 ounces when she was born and spent 96 days in neonatal intensive care.  We brought her home at 3 mths of age weighing 4 pounds and 7 ounces.  She was beautiful and a fighter from the beginning.  I remember promising her she could have all my dolls if she'd just make it out of there.  She never cared for dolls much.  At 7 mths of age she had her first seizure.  She was developmentally on target until she turned around 3.  She had her first status seizure at 3 yrs of age.  She was then put on topomax which controlled her seizures wonderfully but made her a zombie.  She was seizure free two years when we made the decision to remove her from the drug to see if we could maintain control.  She began talking, playing, interacting.  She just came alive.  She had her second status seizure after being off the topomax for nearly 6 mths.  This one was 2 1/2 hours long and we were care flighted to a children's hospital where she was put in pediatric intensive care.  She came out of it o.k. which was a miracle.  We went home on new drugs and hopes that they would work.  She began having new types of seizures.  complex partials and absense.  These were almost daily.  She would only have tonic clonics around every 4 to 6 mths but they'd be status ones and we'd have another careflight.  She always came out of them o.k.  We did this 12 times in two years.  Through all of this Hannah was doing amazingly developmentally.  She was so much fun and seemed to really be enjoying life.  I know I was enjoying her so much.  In January of 2010 she had the final status seizure that took her life.  She didn't come out of this one o.k.  She never recovered.  We had to make the decision to remove her from life support.  We were all in shock.  She'd always fought and won and that's what we were expecting.  I'm still in shock I think.  It wasn't supposed to be this way.  The very first time we saw a neurologist he told me to my face that you cannot die from a seizure.  I would love to take him to her grave today so he'd never tell another family that.  I miss my girl so bad.  She was only 8 yrs old.  She may have had autism and DRAVET syndrome(severe form of epilepsy) but she loved living and did it to the fullest every day.

Child Loss / Re: My girl
« on: June 17, 2010, 06:54:50 PM »
Today Hannah has been gone 5 months.

Child Loss / Re: My girl
« on: June 16, 2010, 11:42:09 AM »
Tomorrow Hannah will be gone 5 mths.  I held her for the last time as the breath left her body. :(  We could have kept her on life support.  We decided against it.  Sometimes I wonder if I should have.  It felt too selfish of me to keep her like that at the time but I'm not sure.  I would give anything just to crawl up in the bed with her right now. 

Child Loss / Re: My girl
« on: June 15, 2010, 10:05:11 AM »
If you're married, did losing a child tear you apart?  We've been married 20 years this April.  Things are different now. :( 

Child Loss / Re: My girl
« on: June 12, 2010, 04:12:34 PM »
My boys bought me tickets to see the play "Wicked" for Mother's day.  My husband and I went to see it today.  There is a song in the play called, "For Good".  It was read at a memorial service held at the hospital where Hannah died.  I know the people around us had to think we were strange because we both broke down when it came to that part of the play.  We just never know when our loss is going to hit us the worst.  It's there all the time but it hits harder sometimes than others.  I'm at the point where I just want to stay in the house all the time so I won't make other people uncomfortable.  Does it get better?

Child Loss / Re: My girl
« on: June 11, 2010, 07:59:58 PM »
Thanks for the welcome.  Her name is Hannah Gabrielle.  She was nearly 9 years old when she passed away.  She was beautiful inside and out.  I really miss her.  I washed her bedding last night and had no idea how it would affect me.  We recently moved and I took it and realized as I put it in the washer that it was the first time I'd washed it since she last laid on it. 

Child Loss / My girl
« on: June 11, 2010, 04:29:11 PM »
 We lost our 8 year old daughter in January.  She died from complications of a prolonged seizure.  I don't really know what to say.  I'm pretty lost.  She had special needs so I took care of her 24/7.  I don't think anyone in my world understands and most don't want to.  Anyway just found the group and thought I'd check it out.

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