For the past five weeks hemophilia has been the focus of our lives. Yes, I have two sons with hemophilia and it is in our lives everyday, but when your son has an active bleed that will not get under control and you are in the hospital, it becomes your life.
My “Christian” was discharged yesterday after a lengthy stay, and to say we are joyous and full of thanks is an understatement. But this evening he looked at me and said “my knee hurts.” My blood pressure went through the roof and my heart is still in my throat. I jumped into action with a dose of pain meds, ice and elevation and his scheduled infusion is running as I am writing. I called his doctor and he wanted to increase his factor a bit so that is what we are looking at for now.
When my son is recovering from a bleed it’s like watching a pot of water and waiting for it to boil. I know I can’t live like that, but right now that is where I am . I am making myself crazy! My anxiety is taking over and I truly feel sick. I just can’t breathe.
I’ve been living with a bleeding disorder in my home for over 17 years and for the first time ever I feel like I can’t go another step. I know I have to….but it’s how I feel.
I don’t want to melt down but I think for the first time I’ve understood how people do get to the point of breaking down.
I’m embarrassed to feel this way. I am a pastor’s wife, have a ministry of my own, am a cheerleader in the corporate world for the team I work with and am known as an encourager and one who champions hope.
But the bottom line is…I am human.
My son had inhibitors for 14 months. Not fun. I had to learn to use denial as a tool – to consciously block out tomorrow, or even the next 5 minutes if I had to. Most days I had to because of two other children without a bleeding disorder. I had to keep functioning. I also learned to take planned meltdowns, if you will. I allowed myself to grieve and rant, but for a limited time. You are not alone, mama. Sending you hugs and prayers.