Wednesday, October 26, 2011

Rough Time

The last few weeks (almost 6 weeks to be exact) I have had company at my house. I complained to any and everybody that would listen to me. During this period I also had many things going on in my work and personal life. I threw numerous pity parties for myself. (. . and probably consumed one too many glasses of wine! :)

This weekend I got over it all. Yes, the company left and that helped me "get over it" much faster. I was also reading post on the FB page "Hemo Friends" that I check daily. Some of the things that these families go through on a daily basis made me sit back and think how truly blessed we are. It also made me think about how I could turn my negative attitude into positive energy that might help other people.

I can't imagine infusing Trenton every day. I can't imagine him having a port or having a port infection. Inhibitors. .. . .would probably have to join the wine of the month club! Recently, we lost a member of the group. A young boy around Trenton's age passed away because he didn't have access to care and could not receive his factor fast enough. The love and support this group showed to this family made me cry. . . . several times!

The things that these Hemo Moms go through every day makes my complaints in life look like nothing. These women are strong, resilient and more importantly advocates for their children every day. Even though I have been active in the hemophilia community since 1990, I have learned more from this group in recent months than I have at some conferences.

I feel very blessed that Trenton has had so little incidents. Hemophilia is still part of our life. I still pray each night that God would look over him and keep safe. I realize, though, that we all have challenges in our daily life whether it is Hemophilia or something personal that is holding us back. What do we do with these challenges?

I know that next time I think about throwing a pity party for myself, I will turn to my "Hemo Friends" group. How can I support these parents and friends? How can I put my energy into something positive instead of a glass of wine?

I head to Chicago in less than two weeks for the National Hemophilia Conference. I look forward to gaining knowledge that I can bring back to this FB group and also bring back to the Midwest Hemophilia Association.



Mark T. Kenny said...

Glad you discovered the benefits of connecting with others in our community through social media. Twitter has a thriving community, as well. It's more of an information-sharing community... and it's global. We hear about treatment and obstacles all around the world. If you are coming to Chicago for #NHF11 you should attend #SocialInfusion and meet other social media users.

Unknown said...

Yeah, I was humbled too. It can always be worse right? However, your problems are no less that other Hemo moms!

karen said...

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Unknown said...

Having haemophilia A this means that his body, his immune system, fights off the medicine – the infused factor VIII. The alternative clotting factors that we used to control bleeding were much less effective. His medical condition was heart broken. Despite our visit to several doctors his health wasn't getting better. He was subjected to different medications, by many doctors for treatment without the assurance of having a permanent cure. Having a son with hemophilia and then, the added challenge of an inhibitor, is not always easy. Suspicion that something wasn’t right began when he was 6 months old due to the heavy amount of bruising which started showing up all over his legs. As a parent, I would love to fix things and make everything better. Fortunately, there have been other positive alternative (Herbal Medicine) though few people doesn't know the challenges of living with hemophilia. If your child is having same problem, do not expose him/her to more danger, use a herbal remedy that is safe and effective. Contact him directly for more info with his email address: