Raising a child with a special condition — whether hemophilia or something else — poses a different set of challenges. On top of that, living in a country like the Philippines where public healthcare is so wanting in so many ways, can add up to the daunting task of raising a child with a rare disorder like hemophilia.
Children with hemophilia have unique needs compared with others, even their own siblings without the condition. And yet, we parents need to be careful NOT to put our children with special needs inside a bubble. Below are some basic tips that may be helpful, particularly to parents in developing countries like the Philippines.
The downside of growing up with bleeding episodes is that it becomes your “normal” and you no longer distinguish what is suppose to be the “real” normal. I guess that is true with Star, as is with many others like her.
I have been like that too, believing that “normal” varies from person to person. My “normal” is having very heavy menses on the first three days that at times, I cannot go out of the house for fear of “flooding” the streets. Of course, that’s an exaggeration. But it’s too heavy that it’s too risky to go out.
Star and I always “quarrel” about keeping track of her menses. I insist that she crosses out the calendar the day it starts. This will make it easier for me to monitor her. As our rule of thumb, we’re suppose to infuse after a week of heavy menses. But she almost always forgets.
Don’t let anyone tell you what you cannot do. You can do it if you will. That is what I always tell my kids – including my now 13-year-old daughter Star, who was diagnosed with von Willebrand Disease (vWD) six years ago. VWD belongs to the group of bleeding disorders more known as hemophilia, where the person’s blood lacks the ability of clot.
Star is supposed to be a moderate “bleeder” but ever since she started having her monthly periods, I have second thoughts on the meaning of “moderate.” ….