I’m not going to talk about Hemophilia in the World Hemophilia Day, because it is ordinary for other people doing that. I want to do something different, something like a related story and gratefulness.
Let’s start with story part. I was born with Hemophilia without inheritance. It means I got this disorder gift from nowhere just by a chance that’s lower than winning lottery. However, Hemophilia brought us no joy nor pride, but sorrow and fear. It is my own misfortune, but since I was a kid, it has been a big worry for my family, especially my mother. She has been worried about my disorder really long ago before I knew what worrying is.
My mother was there when the pain tortured me at nights. Nights, not night. More than ten years ago, when Vietnamese people don’t know what clotting factors are, cryoprecipitate was the only chance for us, people with Hemophilia, to stop bleed and pain. But the fact is we didn’t have enough cryoprecipitate to completely solve even a joint bleed. Therefore, pain follows me to the nights. I couldn’t sleep, I couldn’t rest, I couldn’t even move because every single movement could hurt me extremely bad. Someone told me “The pain you suffer from Hemophilia is something no one can share”, they’re right and wrong. My mother couldn’t take the pain for me but she shared those dark moments with me. She stayed awake beside andgently rubbed my swollen joints. Now I know rubbing is theoretically bad because it makes the bleed worse by speeding up bloodflow, but at that time, her light rubbing helped me a lot. My pain was reduced slightly, enough for me to take some little nap. Thanks to her, I could sleep about five times a night, ten minutes each, give or take. Those ten-minute-napsmeans so much for a kid who could do nothing but squeezing his own limbs in pain, crying and staying awake the whole night, and few nights after, until the bleed stopped.
The pain caused by Hemophilia is really unique that no words can truly describe. I have grown up, so have the pain. I don’t yell or shout anymore, because I’m an adult, but I still cry silently and helplessly when deep pain visits. Other adults patients feel the same way as I do about deep pain, they can’t help either. Hemophilia’s superpower is to make an adult cry like a baby.It’s the truth thatanyone with severe Hemophilia who has experienced all the pain without treatment wouldunderstand. My mother is not with Hemophilia but she understands it completely, because she has witnessed her son, who is about 0.04% active factor while bleeding, writhing in agony for years.
Therefore, my mother cares about me so much, sometimes she overcares, and I understand why. There are times I feel troublesome and awkward, however I still acknowledge and appreciate. She drove me school, she drove me hospital, she brought me from places to places in search of someone or somethingthat can cure me. She spoonfed me when my arms were immobilized hurt, she rised my leg when my knee was terribly swollen. She is the one brings me lunch regularly when I stay for long treatment. She cried when I cried.When I went to secondary school and accidently got hurt, my mother carried me on her back many times to the motor; my father did it, too, but he is a strong and tall man. Could you imagine a woman had to carry her son who was taller than her, on her back? Do you like it? I do not. She said to me, “No matter what, my knees are stronger than yours”, and forbid me from climbing down. Since I was a highschooler, clotting factors became common and I can handle the pain on my own most of the time it happens. Though, sometimes symtomps are still out of control, I silently cried a lot at night, and my mother still knows somehow. She came to my room, rubbed my limbs gently like old days and decided to stay but I refused so that she can have her sleep. I can’t let her stay awake with me whole night anymore.
Thanks to my mother, I can steadily live with my Hemophilia.My mother never leaves me despite the fact that some parents abandoned their Hemophilia children. You may wonder why I jump to gratefulness part while we’re in story part. Because this story never ends, it’s being continued everyday, and I want to say thanks to my mother in the World Hemophilia Day, with no delay.
To the best woman in my life: Thank you so much and love you, mom.