There is a lot of “no” in a house where hemophilia lives. While I would like to think that myself and my husband have been good about keeping an upbeat and positive attitude around our son, Jackson, I can’t help but wonder if maybe a little negativity has seeped through. Or maybe the negativity was […]

Too Blessed to be Stressed

“I had a lot of anxiety that I was sick and that people were placing fault or blame on me.” – Mily, hemophilia momWinter can be a beast in New Jersey. Taking a moment to admire the beauty of snow calms me. However, it is crystal clear that some things do not calm us, and it is […]

Accepting the Challenge

This blog was originally written in Spanish. To read in Spanish, select “Spanish” in Google Translate: [prisna-google-website-translator]I am the mother of a 15-year-old girl, Yanira, with a rare bleeding disorder, severe factor V deficiency. Remembering how the process was to detect her condition and diagnosis reminds me of the distinguished courage she has had since she […]

I Already Have My Mother's Day Presents

It has been a terrible, horrible, no good, very bad, week. It has been time consuming, draining, and stressful. We have been back and forth to the HTC for some transitions in Nicholas’ independence. It hasn’t been easy for him. On top of that, he’s been experiencing daily nose bleeds that have been challenging to […]

Too Many Transitions

I know this is what we raise our children for – for them to leave the nest and fly on their own – I just never knew it was going to be so hard when it actually happened. My son, Nick, who is almost 18, started a Monday, Wednesday, Friday routine of prophylaxis when he […]

Let Them Hurt

 Let’s talk about losing a child. I know, not a feel-good topic, but one I’m living with right now.The reason I blog, the reason I know why I even know about my own bleeding disorder is because I had a son. I say “had” because he died on Jan. 1, 2021. His name was Max, […]

Mental Health is More Than Just a Buzz Phrase

Happy 2021 everyone! With this New Year comes a lot of hope and promises. It was a long 2020 with many life changes and stresses.I am the mother of a 28-year-old son, Michael, with severe hemophilia B and inhibitors due to allergic reactions to all factor 9 products. I know that sounds very stressful just […]

El Deporte Para Su Salud

Como saben soy mama de un niño de 11 años con hemofilia. Cuando mi niño fué creciendo empezó a aumentar de peso y en ocasiones presentaba dolores en sus tobillos.Yo como mamá súper protectora, (sí lo acepto, tengo que trabajar conmigo misma para no transmitirle miedo a mi niño) no consideraba ningún deporte como una […]

From My Son’s Point of View

It’s been a year since the first case of COVID-19 was reported in the United States. The ever-evolving coronavirus situation can be a bit intimidating. With social distancing and quarantine are becoming frequent vocabulary words in our everyday conversations. The whole thing can feel downright overwhelming.Answer me this question…when did feeling exhausted and overwhelmed become […]

Asomos de romance inesperados

Mi esposo y yo nunca pensamos que terminaríamos el uno con el otro como compañeros de vida. Teníamos en común que los dos estábamos haciendo segundos bachilleratos en música en el Conservatorio. Fue allí donde nos conocimos, pero en todo lo demás, parecíamos ser totales opuestos. A pesar de mi estatura sobre promedio, yo era […]