Wednesday, July 18, 2007


Well, I'm not really sure why I am doing this whole "blog" thing. I guess I'm hoping it will be theraputic or something, you know, because writing about your life for the whole world to read is healing! Ha ha.

I guess I should get right to the point and just tell you that my Princess, Isabella died on May 31st of this year. She was 14 months old, and one of the lights of my life. She was born with a rare genetic condition called Lissencephaly. Basically that translates literally to mean "smooth brain". Oh, and it sucks. We found out when she was 6 weeks old because she started having tonic clonic seizures in the middle of the night (I'm such an awesome mommy, I woke up and saw her having them). Needless to say, devastation ensued but we dealt with it accordingly. I loved Isabella anyways of course and became so determined to try and make her life as comfortable as possible. I won't bore you with the details of her 14 months here, it was difficult, beautiful, wonderful, tragic and magic all at the same time.

I also have a wonderful (and healthy) son who I will refer to as "Turkey" who just turned 3. Oh, and I'm pregnant with baby #3, a boy (who also hopefully healthy) named Rollie Pollie (not really!). So yeah, life is complicated to say the least right now.

I found out I was pregnant back in February and had so many mixed emotions. Could I take care of Isabella and a new baby? What about Turkey? What if Isabella died while I was pregnant? (turns out that was a valid fear), would this baby have the same disorder? (we were given a next to nil chance that it would happen again, but somehow that failed to convince us completely).

We decided to be cautiously excited and so far, so good. This baby does not have Lissencephaly or any other common abnormalities. As for the not so common.....who knows? Scary stuff, genetics.

When Isabella became ill that last week in May, I just didn't see it coming. It wasn't her usual pneumonia or anything else that I had seen from her. She just seemed to be "shutting down". She was in Hospice (praise God for those saints!) so I knew she would remain home with us and be comfortable. The downhill spiral started literally in the middle of the day on a Saturday, by Tuesday we knew she was dying and on Thursday at 8:30 pm, she flew away to Heaven while in my arms. Just typing that brings tears to my eyes. It was the most difficult, peaceful and beautiful experience of my life. I miss her so much, it physically hurts. I hate Lissencephaly. I hate that this happened to my daughter. Sometimes I blame myself, even though I followed all the pregnancy rules religiously, I guess I feel like my body failed her somehow. Perhaps it was my egg or something......... You know, geneticists say that most defects actually do come from the mother, as our eggs age and sperm does not since it is regenerated. (Don't tell my husband that!)

I guess that's enough "heavy lifting" for now, I really need to TRY and get some sleep, although sleep does not come easy these days.............

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