Bleeding Disorder Awareness Month

March is BleedingDisorder Awareness Month.  It is a month when our community puts their best efforts forward to spread awareness about the disorders that our community live with every, single day.  Personally I don’t do anything different during the month of March except change my Facebook profile and cover photo.  I write and share my stories and struggles often and when I do I am making people aware that hemophilia is a chronic illness that brings a lot of struggles.  When your child is doing well, walking and using their limbs without problems, people don’t understand that they can still be in pain.  I think hemophilia is definitely an “invisibleillness.” 

My ten year old son, Caeleb, has significant joint damage in his right knee and right ankle.  If you watch him sit on the floor, you will notice that his leg doesn’t quite straighten all of the way out.  When he walks, he has a subtle limp that becomes more pronounced the faster he walks or runs.  And during the winter months, he aches.  He has pain that a ten year old should not have. He compensates and gets around very well, but I also wonder what kind of pain he has that is part of his normal.

If we go to a mall or a place that has a significant distance to walk, we will often use the handicapped placard to park.  Whenever I have the chance to cut down on some walking to alleviate achiness and soreness for Caeleb I will.  You should see the stares we get!  They are almost as bad as the stares we would get when he was in a wheelchair in the airport.  Once we arrived at the gate, Caeleb would get up from his wheelchair and walk in the waiting area.  Of course people thought, “There’s nothing wrong with him!”  I guess I should carry his MRI films with me to show them different. 

It’s no one’s business.

You just never know what someone is dealing with.  Everyone has a struggle that you know nothing about.  And often times an illness that can’t be “seen” causes individuals to need assistance that is not obvious.  We need to stop judging others and worry about ourselves.  When we do the right thing that’s all we need to worry about.

Easier said than done. 

I don’t want anyone to feel sorry for my sons or our family.  I want them to see that the disorder they struggle with is real. It is serious and I want people to know what hemophilia is so that they will be aware and pass information on to others.  We never know when a little piece of information can be lifesaving for someone else. 

I want people to see how strong and amazing my boys are as they live and thrive with hemophilia and inhibitors.  They could have easily given in and been scared to try new things, but they are both well adjusted and living with passion.