There are days when I feel as though the world may just fall right out of orbit. And that scares the hell out of me. As times goes by I find myself wishing more and more that we could be normal. There is this urge to protect my child from ever feeling an ounce of pain. Then there is heartbreak to know that not only have I failed but that I will continue to. It’s overwhelming. Normally I can be ok with our situation. I have accepted that we can only make do with the circumstances and be the best that we are. But this prophylaxis treatment and all that it means has shifted my clouds to gray. Theres a bit of finality to it I think. Yes, he has it and always will. It’s such a big deal that they feel like they need to treat him for a disaster that has yet to occur, and he doesn’t even know it. I am doing everything I can to ensure that he grows up happy and healthy including centering my education around healthcare but with this treatment I can hear the clock winding down to when he will have to have surgery. This makes me feel more helpless than I ever have before but I know that this feeling will grow when it actually happens. I want to cry. But I couldn’t bear to have my Anthony see me like that. So instead I tell myself to go with it. Make the hard choices. Fight for him when I have to. Be his rock and hope that when he gets older he knows how sorry I am that this had to happen to him. All the loss in my life didn’t prepare me for the sorrow I feel. I know it’s not like he’s dying or anything but I never wanted my children to grow up too early and in some ways I feel like because of this he will. And I feel like I have myself to blame. It came from me after all. I am the one who chose to carry him and have him. Granted at the time I was unaware that hemophilia was a possibility and I certainly didn’t imagine it would be the outcome. But I am still the one that gave it to him. It’s my chromosome that is damaged and so we only have me to blame..I am having a hard time finding silver lining….
Saint Francis of Assisi wrote “Lord grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.” Lately I have been having trouble with this one.