Don’t you just love when you put your child with a bleeding disorder to bed and you’re thinking how grateful you are for an uneventful day? Then when he wakes up the next morning and he can’t walk because his knee is blown up.
Yes, this is life with hemophilia and an inhibitor. You just never know what is going to trigger a bleed. I love when my healthcare provider asks me “Was he doing anything to cause the bleed?” 95% of the time all I can say is “He is just being “Christian” J
So many times I wish there was a reason for a bleed. If I had seen my son fall, or bump into something…that would explain it and I would halfway expect something to happen. One thing is for sure…I listen to my son. He always knows when a bleed is starting. Sometimes it takes quite a while for the bleed to become evident and other times the affected area just blows up.
You would think that a “seasoned “ hemophilia parent like myself would get used to hospitalizations, bleeds, infusing every 3 hours, doctor’s visits, and blood draws. But the reality is that you can never be completely emotionally ready to see your child struggle.
A 7 year old shouldn’t have to rely on a walker or a wheelchair or have to miss tons of school. But that is part of our reality with hemophilia and an inhibitor.
I’m just grateful for my son, just the way he is, struggles and all.
Your famil story is inspiring. I'm a 29 year old mom of 4 little girls who has spent only the last 6 years suffering from severe anemia. It's nothing in comparison to your sons struggles, but seeing your dedication gives me hope. I have my preop appointment tomorrow morning to have a port put in my chest because of the frequency of my intravenous iron therapy and blood draws, and the difficulty of my unusually small rolly veins. I'm nervous. I have health insurance for two more weeks. Seeing other parents staying strong makes me feel stronger. Thank you and best wishes. <3