Consider yourself lucky that you or your child doesn't have a bleeding disorder.
Consider yourself lucky that you have never had to poke your baby and do an IV infusion three times a week; sometimes more.
Consider yourself lucky that with any bump, scrape, bruise you can hug your kid, dry their tears and send them on their way without wondering if that is something you might need to infuse for.
Consider yourself lucky that you have no idea how expensive it is to have a hemophiliac.
I have a 7 year old son, Jackson. He was born with severe hemophilia A, factor VIII deficiency. He is missing a protein that makes his blood clot. We administer infusions twice a week to clot his blood and let him be a "normal" boy. You cannot see hemophilia. What you can see is a handsome blonde haired, hazel eyed boy who is solid, has a great smile, is competitive, loves to give hugs, has a caring heart and talks about and play sports.What you cannot see is an internal bleed. He can feel it and many times he feels is before it swells and we can physically see it. He may need to ride in a wheelchair, even though he has no visible broken bone casts, because he can't bear weight on his foot due to an ankle bleed. He may need to use crutches because he has a joint bleed. He may look like he is "faking" an injury but he isn't. Just because YOU can't see it doesn't mean it doesn't exist.
I'm not sure what myths/lies you've been told about hemophilia but it did not come about from incest, as much as TV loves to glorify things. Yes, hemophilia was known as the Royal Disease as members of many royal families did have hemophilia. No, hemophilia is not contagious. No, my son will not bleed to death from a paper cut...he will bleed, a little longer than you, but he will not die (and we've been asked that a million times!!) My son can be a rowdy, rough and tumble boy like any other boy.
Hemophilia can side line him from having fun just as a cold or allergies can side line us for a day or two. We have brought our son up letting him know that hemophilia is just a part of him...it doesn't make him who he is. Jackson is wise beyond his years. He understands compassion for all. He knows physical pain and emotional hurt. He knows empathy.
I don't blame you for not knowing about hemophilia. There are plenty of illnesses and diseases I know nothing about. Ask questions, don't assume you know anything about hemophilia. And if you are asking question please listen to what we have to say. And most importantly, treat my son like a human. He has thoughts and feelings too. Showing compassion is a wonderful trait and appreciated by the ones who need it most.
|Photo credits: Google images|