Tuesday, April 20, 2004

What an awful day this is. Let's mark April 20th, 2004 as a day to forget.

This morning I sadly found out that a little girl, all of 8 years old with RDEB like my son, passed away this past Friday after they stopped her blood transfusions because they were just too painful and they weren't stabilizing her. She died 2 days later. This of course hits me like a ton of bricks because my son has the same form of EB, he is 7 years old, and while his anemia problems are so far under control (barely...), it's scary to think that Nicky might have the same fate... I just can't think about it... let's just say I wish to ignore what could be a devastating future and live day to day.... ugh...

Then this afternoon I got an email from my mom to sadly tell me that my best friend in Italy died of a brain tumor. She had only found out she had the tumor a few months ago and we knew it was lethal... still, this is a big blow to me, I can't stop crying. She was only 38 years old and had a little girl that was only 2.5 years old. She had gone through 7 years of infertility to have her baby girl only to die when the baby is soo young... life just isn't fair.
What makes matters worse is the fact that she died on February 29th, which means that if this year wouldn't have been a leap year, she would have died on the same day Alex did. I don't know how to feel about it... warm that Alex was there to greet her? Creepy? I don't really know.
While we were best friends as teenagers and wrote to each other countless letters after I moved to the U.S., before I found out about her cancer, in early 2002, I was upset with her for her lack of compassion toward my loss of Alex and how sick Nicky was. He never wanted to talk about either. For Xmas 2001, when it went to Italy to visit my family, she came to see us and never once did she acknowledge Nicky, all she wanted to talk about was herself. This was annoying at the time, but what got me really upset one day was the fact that she was very snotty in an email she wrote me, telling me how come I never told her that I was getting married... what? Greg is all I talked about to everyone for the past several years, the wedding date had been set for months and we had planned a wedding for years, so for her to say 'why didn't you tell me' told me that she was so wrapped up in her own life to really pay attention to what was going on in anyone elses. It also bothered me that she never once replied to my emails, she always wrote new ones, never answering questions or anything, she only talked about herself.

This was not the Paola I knew, and if I would have known then what I know now, I would have realized that years and years of infertility had truly scarred her, plus she was possibly feeling the unknown sympoms of the brain tumors.

I wrote her a long, very long letter (not an email) when I found out about the tumor, telling her I cared about her, to please write me, but she never did reply.

I wish I would have known, in that winter day 2001, that I would never see her again... sigh...