I have met many women who are living with a bleeding disorder. I have met even more women who are managing their children's bleeding disorders. I have met a few that are doing both. I have to say again how lucky I am and how amazed I continue to be every day by the strength I see in these women.
We are lucky. It would be extremely unlikely for Abbey to suffer a spontaneous bleed. But I worry about it every time she's away from me. Whenever I hear her say she's bleeding, my heart drops a little. Everytime I see a new bruise, I wonder.
Last week she had a nose bleed at school. She didn't get hit or bumped. She wasn't having sinus issues. She just had a little nose bleed. My first thought was "Oh my god. No. She can't be having a spontaneous bleed."
I think about the talk we'll have to have when it's time for her to start having periods. How she'll have to be extra prepared, because it will be much heavier for her. Will she hate her body for betraying her this way? Will she always see herself as being different?
I think about the conversation we will have to have with both of our girls and any other children we have about the steps they will have to take for their children. What if they decide to not have children?
As painful as all these things are for us to think about. There are people all over the world that actually have to deal with spontaneous bleeds, and treating at home every day. For some it means never being more than 1 hour away from their treatment center. The only treatment available to them may be a blood transfusion, and that can't be done at home or on the fly. If that were us, we wouldn't be able to go to Peoria or the Quad Cities let alone Chicago or St. Louis.
Can you imagine having to receive regular blood transfusions for your entire life? Can you imagine spending every day with your child worrying that today they had started bleeding into their brain or abdomen or joints, spontaneously for no reason? Can you imagine raising your child and explaining to them that they can't play some of the same things as their friends because their body won't allow them to?
The strength and grace and courage that these women and children and families display day in and out takes my breath away. I am honored that they have welcomed me into their community and I hope to help them make an impact in the fight against these bleeding disorders.
We are lucky. It would be extremely unlikely for Abbey to suffer a spontaneous bleed. But I worry about it every time she's away from me. Whenever I hear her say she's bleeding, my heart drops a little. Everytime I see a new bruise, I wonder.
Last week she had a nose bleed at school. She didn't get hit or bumped. She wasn't having sinus issues. She just had a little nose bleed. My first thought was "Oh my god. No. She can't be having a spontaneous bleed."
I think about the talk we'll have to have when it's time for her to start having periods. How she'll have to be extra prepared, because it will be much heavier for her. Will she hate her body for betraying her this way? Will she always see herself as being different?
I think about the conversation we will have to have with both of our girls and any other children we have about the steps they will have to take for their children. What if they decide to not have children?
As painful as all these things are for us to think about. There are people all over the world that actually have to deal with spontaneous bleeds, and treating at home every day. For some it means never being more than 1 hour away from their treatment center. The only treatment available to them may be a blood transfusion, and that can't be done at home or on the fly. If that were us, we wouldn't be able to go to Peoria or the Quad Cities let alone Chicago or St. Louis.
Can you imagine having to receive regular blood transfusions for your entire life? Can you imagine spending every day with your child worrying that today they had started bleeding into their brain or abdomen or joints, spontaneously for no reason? Can you imagine raising your child and explaining to them that they can't play some of the same things as their friends because their body won't allow them to?
The strength and grace and courage that these women and children and families display day in and out takes my breath away. I am honored that they have welcomed me into their community and I hope to help them make an impact in the fight against these bleeding disorders.
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