Wednesday, April 21, 2004

Manipulating a disability post into something political?

Yes, that is what happened this past couple of days and it has gotten me furious.
I received an email the other day about Bush taking away Closed Captioning for the deaf and to sign a petition. My ex-father in law, a dear sweet man I will never forget who died a few years ago, was deaf following a bomb exploding near him in Vietnam. To say that he relied to closed captioning is an understatement. There wasn't much he could do so he watched a lot of television. My son also uses closed captioning 24/7 to learn how to spell, so... I signed the petition, no brainer. I then forwarded the message to everyone I know including other lists so they would be aware of this travesty and sign the petition too.

What happened after that is baffling. For one, a relative that never replies to me (not even to say how cute Nicky or Connor are in the pictures I send him) immediately went on the Bush defense and stated that not only he thought it was a hoax, but that this had nothing to do with Bush but congress. Hmmm? Doesn't Bush sign or vetoes this sort of things? Whatever.

For two... I have a few mailing lists that I moderate, and there are three taboo subjects, politics, religion and abortion. I did that to basically 'keep the peace' on lists that have nothing to do with politics, religion or abortion per se.
When I forwarded this post to sign the petition to keep closed captioning, everyone on miscellaneaous lists thanked me for letting them know about it and either signed or basically I assume, ignored the email. But not on my high school reunion list. No sirreee.... While one classmate thanked me and signed it, a group of others, one after the other, blasted me for stating that I do not allow political talk, yet I post about a political issue. "This is not a political issue, it's an issue, I stated, nothing to do with your party affiliation"... but, no, I got blasted somemore. To say I was livid is the understatement of the year.
These people showed a heart of stone, and I told them that I duly noted the fact that they don't care about the disabled community and then I further stated that if they want to talk politics on the list SO BAD that they blast me and manipulate a post in being political, then to, by all means, go ahead and start talking politics all they want, to go right ahead.

Sickening... sickening... sickening... ugh!!!

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...

Friday, April 02, 2004

Would you believe?

Yes, I am the latest victim of Identity Theft. Hard for me to believe that I was singled out by seemingly a complete "local" stranger for them to impersonate me and open at least 2 cellular phone accounts. Who knows what else? For now the two cellular accounts have been suspended and are being investigated. I am not responsible for the charges. But there is yet another inquiry to my credit report that I won't know more details about until next week, and I hope it's not going to be something "bad". Ugh.. like I need something else on my plate to deal with... never a dull moment, I swear.

On a positive note, Nicky got his power chair today.. yey! It looks awesome and he loves it. He did not want to get off it, ha ha. I am sure it will get a LOT of use!!