Five years ago I would have never pictured myself watching my boys at 7:30 in the morning on the dock at camp, joyfully announcing that they caught another Goby fish. Being boys. Being normal.
Of all the ingredients needed to make our blood clot, missing or being low on one means having hemophilia. My boys have that. They have a severe form as their blood has less than 1% of Factor 8. It’s just one component. Unfortunately, all must be there for the clotting process to happen successfully. My boys don’t so they bleed longer. And because of that low percentage, introducing larger doses (as medication) was not recognized as normal. When we’d treat them for something that would normally leave a bruise on anyone else, their immune system would destroy it as something foreign. This complication, called an inhibitor, resulted in implanted ports. This way the boys could receive high doses of the Factor, kinda like allergy shots, every day. The more it was introduced, the more the body would accept it, and so, allowing it to work. Once that started, the Factor needed stay in their system all the time or the body would ‘forget’ and start to destroy it. For the first year following their operations, medicine was daily. Now it’s every other day and will continue for their entire lives. Or until a cure is found.
The first few years of their lives were spent in the ER every time they bumped into something. Think about how often a seven or eight month old bangs into something crawling. Toddlers fall down quite a bit while learning to walk. Then there’s running, jumping and playing. And so that was my life before their ports and medicine each day. My life was disrupted by bleeds despite how much I padded them and our home. No matter how careful I was. Eleven at night, two am, Christmas morning, it didn’t matter what was happening or where we were. Life would stop for at least a three hour trip to the hospital where my baby would squirm, cry and scream while they tried to find a vein to give medication. Then we’d have a few more days in limbo while we allowed the effected limb or joint to rest.
I never thought I’d have normal again. Of my four kids two had this problem. My life was caught up in hyper-vigilance and worry. I couldn’t see outside my own personal hell to realize there was “the other side” and someday I’d make it there. It took years of sleepless nights, frustration and patience.
Today, other than fighting over who has to get medicine first, life is pretty much normal. They do things other boys do with gusto. They fight and play and act goofy. Just a few minutes ago my oldest, being eight, announced he was going to go on the inner tube. When we questioned the early-ness of the day and how chilly it was, he replied: “Yeah, because I’m a man.”
Yes, I guess life really is normal.