Don’t let anyone tell you what you cannot do. You can 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.” And I dread the thought of what severe bleeders go through.
Star has been menstruating practically since New Year this year, save for a few days of break after infusions. She had two factor infusions and one cryo-precipitate transfusion in February. Her menses slowed down in the early part of March (meaning, she only used sanitary napkins instead of diapers). But last Sunday, I saw thumb-sized blood clots in the shower. Monday she asked if we could infuse again. Yesterday, we went to the hospital to infuse. The doctor recommended daily infusions for the next two days. March is almost over and here is our girl, still bleeding.
Despite this, I am thankful to God that Star grew up a strong girl. I remember her proudly telling me when she was in Grade 3 that she brought one of her classmates to the clinic. The classmate had a nosebleed and Star, being considered an “expert” when it comes to bleeds, came to the rescue. Her teachers would tell us she acts like a big sister – always looking after the welfare of her classmates.
Star and I recently came back from a six-day work in a remote place called Batanes, one of my favorite spots in the world. Batanes is a tiny group of islands in the northern-most part of the Philippines. It’s actually nearer to Taiwan than to the mainland of Luzon where the capital of the Philippines is located. I organized a group of reporters to join a special flight of a new airline company where I work as public relations manager. Since Star’s school year has ended, I decided to tag her along.
She had long wanted to join me in my trips to Batanes, like everyone else in our family. When I told her hematologist about the trip, she warned me against it saying that the hospital in the island might not be ready to handle Star in case something happened. It made me re-think of bringing her. But then again, we could bring factors and in case of emergency, we could easily contact her hematologist on the mobile phone.
Star was awake the whole flight and I could sense her excitement even before our plane landed. “Mom, it looks like a palette of green,” she told me as we were taxiing in the tiny runway of Basco, the capital town of Batanes. Batanes is so clean, so fresh and so relaxed. With a population of only 16,000 scattered in three islands, it is a stark contrast to Manila where we live. Manila is one of the most populated metropolitan areas in the world with a population of over 12 million.
Batanes is a time-warped place so different from the rest of the Philippines. Because of its isolation, the natives of the island managed to keep their traditions and customs intact and outside influence comes a bit slow. You can see so many cows and water buffalos everywhere. It is not surprising to see farmers still riding in horses.
I could see Star’s fascination as we went around. She would fearlessly go up and down the steep hills. One time, I was busy talking pictures of the hedgerows, a significant landmark in Batan, one of the main islands of Batanes. I knew Star was just nearby. But the next time I looked, she was already up on a hill with 70 degree slope! I shouted for her to come down. But she was just waving back at me teasingly.
The next day, I spent the whole afternoon in a meeting with the Mayor. Star, on the other hand, joined the reporters and the tour guide to an ancient burial ground. The next thing I found out, after going to the burial ground, Star went riding on motor bike with the tour guide. I almost had heart attack thinking of Star going to the mountains with steep cliffs on a bike!
But that is so typically Star –a brave and adventurous girl, sometimes to a fault. Despite being on her 13th week of bleed and still wearing diaper at that, she was having so much fun. Seeing Star enjoying life makes me happy. That is what her dad and I want of her – to live a normal life. There will always be “non-normal” days. Sometimes “non-normal” days are even longer. But we decided that our bleeding disorder doesn’t have to rule our lives. Being told we cannot do things just because we are “different” doesn’t always mean it is gospel truth. We can if we will. ##