Learning everything I can about the bleeding disorder that has forever changed my life is very important to me. I spend 30 minutes to an hour every day reading new articles, looking for clinical trials, learning about other bleeding disorders, looking for other families affected by bleeding disorders and trying to find answers to all the questions I have. Before Izzy, my only knowledge of Hemophilia or bleeding disorders was Ryan White and the AIDS epidemic of the 80's. I would venture to guess that for many people, it's the same story.
I diligently post links to literature here on my blog and on my Facebook page. These are the 2 places where I can reach the most people and share the most information, and educate as many people as possible. I look for articles and websites that are informational, and easy to understand. This is very important to me, and something that I will continue to do until I die, or until there are real, effective, safe treatments for everyone affected by these disorders.
I was amazed to learn that several people I am close to have not been reading all of this information. I was really surprised and a little hurt. Okay, a lot hurt. My daughter died. She breathed for 21 days. She bled into her brain until her brain died. Her brain died well before her body did. She died.
I know, I know, I know. I can't expect this to consume other people the way it's consuming me. People have to get on with their lives. I have to get on with my life. But I view this issue as an opportunity to keep Izzy with us. To make sure that her life matters. To make as beautiful a mark on this world for her, as she would have on her own. This is important. Not just to Abbey and I who have this disorder, but to other mothers who have babies with umbilical stumps that bleed just a little too much. This is important to increase awareness. This is important because I believe God sent us Izzy to remind us that good can come from horror. He sent us Izzy because these disorders need attention. The people affected by this need help. I am not going to ignore this opportunity.
I diligently post links to literature here on my blog and on my Facebook page. These are the 2 places where I can reach the most people and share the most information, and educate as many people as possible. I look for articles and websites that are informational, and easy to understand. This is very important to me, and something that I will continue to do until I die, or until there are real, effective, safe treatments for everyone affected by these disorders.
I was amazed to learn that several people I am close to have not been reading all of this information. I was really surprised and a little hurt. Okay, a lot hurt. My daughter died. She breathed for 21 days. She bled into her brain until her brain died. Her brain died well before her body did. She died.
I know, I know, I know. I can't expect this to consume other people the way it's consuming me. People have to get on with their lives. I have to get on with my life. But I view this issue as an opportunity to keep Izzy with us. To make sure that her life matters. To make as beautiful a mark on this world for her, as she would have on her own. This is important. Not just to Abbey and I who have this disorder, but to other mothers who have babies with umbilical stumps that bleed just a little too much. This is important to increase awareness. This is important because I believe God sent us Izzy to remind us that good can come from horror. He sent us Izzy because these disorders need attention. The people affected by this need help. I am not going to ignore this opportunity.
I read them Niki and I'm with you it is nice to know bout stuff like this I never ever heard of it until it happened to Izzy I'm soooo sorry u had to go through this you are a great person and a very good mother and people should take the time to read all this stuff you never know what could happen
ReplyDeleteconnie