One of the hardest things to deal with since my son’s diagnosis has been the unknown. There are so many “what ifs” it’s overwhelming. I still lie awake at night worrying about things over which I have no control. It started with, “How will I know if he is bleeding?”. Then “What if I don’t know what to do?”. Every parent worries about their children, but when the threat is constantly looming, how do you cope?
When Tyler was young, I worried that I would not recognize the signs of an internal bleed and cause irreversible damage. I know this seems dramatic, but I always fear the worst. As a single mom, there was no one else but me in charge. Every time something happened, it was my fault. The kid slipped on a jungle gym and cracked his rib, my fault. The kid ran through “poop water” and got sepsis, my fault. Between worrying that I was screwing up and blaming myself for every incident, I was the most freaked out, self-loathing mother around. Apparently others know what they are doing and I’m the village idiot, right?
The answer is no! People living with a bleeding disorder haven’t figured out all the answers; they have just learned how to cope with the unknown. Peace of mind comes when you realize that you can’t control what happens, but you can control how you react. The most you can do is be prepared for the unexpected. Have a plan in place and you will start to feel comforted knowing that you are prepared. That’s as good as it’s going to get. And surprisingly, it starts to be enough.
Blogging about Bleeding Disorders 