Several people in the bleeding disorder community don’t understand why some people are hospitalized so often for bleeds. “Why can’t you treat the bleed at home? Why do you go to the hospital so often?” Honestly, those kind of comments make me doubt my instincts. They upset me a bit.
Often times my “Christian”, who is a frequent guest on the 6th floor at UNM Children’s Hospital, has to be admitted for bleeds. It’s not just the bleed that is being treated, but the pain. We cannot control the pain at home and the only way to give him relief is by IV Morphine that can be administered at the hospital.
There is nothing worse than hearing your child scream in pain and not being able to help him.
If you were to look at him lying in bed playing the iPad, you would never know he was hurt. But when you pull the covers down and look at his knee and you realize he has not moved positions on the bed for hours on end, you begin to understand.
People don’t understand what our children go through. They assume that if you can’t “see” the condition, it really can’t be all that bad. A cancer patient who has lost their hair is a visual testimony to what they are battling. The same for a person with a missing limb or someone with an oxygen tank by their side.
Truth is, I can’t imagine what my son feels when he has a bleed. It’s a pain that takes him to a different place. Sometimes I think he is out of his mind for a brief few moments, and it is heartbreaking.
If it means coming to the hospital to treat bleeds and pain, then that’s what we will do.
Everyone with a bleeding disorder is unique in how their bleeding disorder “shows up”. As a community, we need to remember that we are all different and sometimes what works for one person does not work for the other. Let’s continue to be passionate about the care we give and receive for our loves ones…and be passionate by reaching out and offering a lifeline of support to each other.
