Meet Fidelina, a strong and courageous mother raising 4 boys, 2 of which have hemophilia. This is her story.
1.Tell us about yourself.
My name is Fidelina, I’m a happy and shy, very shy person, but more than shy, I’m very patient with my boys. I am a mom of 4 boys and married to my husband, Carlos who has always, unconditionally supported me in everything. Two of my boys have hemophilia, the oldest also has asthma but we are doing well.
2. What setbacks have you had along the way?
Setbacks…None really. At the beginning, when my boys were diagnosed, I was very sad, didn’t know what to do, who to go to, who to tell how I felt. We felt something horrible was happening to us and didn’t think we’d know how to deal with it. We couldn’t accept the diagnosis. I did think we’d run into a lot of challenges and wouldn’t know how to deal with this condition of hemophilia, I was even scared to pronounced the word. At first, I wanted to protect my boys from everything, didn’t even want to let them play ball or let them eat certain foods because I thought their gums would bleed. The first days were very difficult but I started obtaining information from my doctor and the pharmacy. My husband was always reminding me everything was going to be ok and to let my boys be boys.
3.What advice would you give someone who needs motivation and encouragement?
I would advise to open up to their doctor. In our community, we fear to ask questions. My advice is don’t be scared to ask questions, trust your doctor and ask everything you need to know about the condition. At first, it seems intimidating but once you accept what the condition represents, everything is easier. You’ll be surprised how far your ability to take care of your children can go. Don’t just believe myths you may hear but, instead look for information.
4. What is the most surprising thing you’ve learned about yourself?
I’ve learned to be stronger, to value myself more as a mom, to be stronger for my kids and my husband and to trust myself more. My oldest son also has asthma. When he was just diagnosed, I also didn’t know what to do. Now I know what to do to prevent it. Just like with asthma, now I feel more comfortable dealing with hemophilia and know what to do and who to go to should my kids have a bleed. I have medication at home in case I need it.
5. How do you give back to the community?
My boys are young and I haven’t been involved in the community yet, but I do try to tell others about the condition as much as I can and tell them my experience to help raise awareness. I always recommend not to be scared, to dig deeper and look for information. Sometimes people don’t want to go to the doctor because they’re scared of the results. In my case, knowing the results has given me peace of mind.
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Conozcan a Fidelina, una mama fuerte y valiente creando a sus 4 hijos junto con su esposo, 2 de sus hijos tienen hemofilia. Esta es su historia
1.Platicanos un poquito sobre ti.
Mi nombre is Fidelina, soy una persona alegre, timida, muy timida, y sobre todo paciente con mis niños. Tengo 4 niños y mi esposo Carlos quien siempre me ha apoyado en todo incondicionalmente. Dos de mis niños tienen hemofilia, uno de ellos tambien tiene asma pero mas que nada estamos bien!
2. Cuales han sido algunas de las complicaciones que has encontrado a lo largo de tu camino?
Complicaciones…….. Ninguna! Al principio si me sentia muy triste, no sabia que hacer, a quien acudir, ni a quien platicarle, sentiamos que nos estaba pasando una cosa muy mala y no ibamos a saber sobrellevarla. No podiamos aceptar el diagnostico. Si pense que iba a tener muchas complicaciones, pense que iba a ser muy dificil sobrellevar esta condicion de mis niños, -de hemofilia-, tenia hasta miedo pronunciar esa palabra. Al principio, queria protejer a mis niños de todo, no queria ni dejarlos jugar con una pelota, ni dejarlos comer ciertas comidas porque pensaba que sus encias iban a sangrar. Los primeros dias fueron muy dificiles, pero empeze a obtener informacion de su doctor, de la farmacia. Mi esposo tambien me recordaba que todo iba a estar bien y que los dejara ser niños.
3. Que consejo le darias a alguien que necesita motivacion y apoyo?
Yo les aconsejo que recurran a su doctor, que tengan confianza a abrirse y hacer todas las preguntas que tengan sobre esta condicion. Al principio parece intimidante, pero una vez que aceptas lo que representa, todo es mas facil. Inclusive te sorprendes de que tan lejos llega tu capacidad para cuidar a tus hijos. Mi consejo es no tengan miedo, no crean nada mas los mitos que otras personas les vayan a contar, busquen informacion.
4. Que has aprendido sobre ti que mas te haya sorprendido?
He aprendido ha ser mas fuerte, a valorarme mas como mama, a ser mas fuerte para mas hijos, para mi esposo, y a tener mas confianza en mi misma. Mi hijo mayor tiene asma, y tambien cuando me lo diagnosticaron no sabia que hacer, ahora se que tengo que prevenir. Al igual que con el asma, ahora ya tengo mas confianza con la hemofilia y se que pasos tomar en caso de que mis hijos tengan un sangrado y se a quien recurrir. Tengo medicamentos en casa en caso de que los llegue a necesitar.
5. De que maneras contribuyes a apoyar a la comunidad con hemofilia?
Mis hijos estan pequeños y no me he envuelto mucho en la comunidad, pero trato de platicarles a otras personas sobre la condicion y mi experiencia, siempre recomiendo que no pasen por alto los sintomas y que no tengan miedo, muchas veces las personas no se hacen examenes porque temen a los resultados. Pero en mi caso, sabiendo los resultados me ha dado mas tranquilidad.
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