Welcome to My World

Author: Tiffany Intal

A very wise friend of mine once told me our labels do not define who we are as individuals. However, for the sake of nomenclature, I suppose I can say that I’m a full-time healthcare employee, a woefully undereducated student, the soon-to-be wife of my high school sweetheart, and an exhausted mother of four. But that’s still not who I am, and attempting to find the right words to describe who I am is a lot more complicated than it sounds.

I was born and raised in the very liberal San Francisco Bay Area. I met John, the love of my life, in 1998, and we’ve been together ever since. Until February 2008, I thought we lived a normal (albeit unconventional) existence. At the time, we were raising two healthy sons and expecting a third. My pregnancy was completely uneventful. Then, one week after my son Ethan was born, he unexpectedly passed away due to a brain hemorrhage secondary to severe factor VII deficiency.

Our perfect little life was rocked to the core.

Like many fledgling members of the bleeding disorders community, we had no prior history of bleeding disorders in our family. John and I were beyond distraught, but we tried our best to hold it together for our boys Kevin, 4, and Anthony, 2. We had been together for 10 years and had two children, but Ethan’s death rapidly pushed our relationship into a level of maturity far beyond our years. I imagine only couples who have been married for decades have this much life experience under their belts.

How Do We Move On?

John and I were 25 years old when Ethan passed away—babies losing their baby. In the months after Ethan’s passing, I often asked myself what we did to deserve such a horrible thing. Was it because we weren’t married? Were we being punished because we were bad people? No parent should have to explain to her children why their sibling died. It is not natural for a parent to outlive her child. The death of a child is far more taboo than death itself, and only parents who have lost children can attest to that very real fact. A sensation of emptiness surrounds you when you watch your child die. Your arms feel empty when you can no longer feel your baby’s presence. You feel completely and utterly alone when you’re grieving.

Even though our family, friends and colleagues tried their best to offer us comfort, at the end of the day John and I only had each other. We desperately clung to one another to feel closeness once more—to fill that emptiness that threatened to swallow us like a black hole. It was beautiful madness to experience the intensity of grief intertwined with intimacy. A few months after Ethan passed away, we found out I was expecting again. From death came a new life.

We were expecting our fourth child on February 20, 2009—what would have been Ethan’s first birthday. Throughout the entire pregnancy, the significance of that date loomed over our heads. What did it all mean? John and I knew there was a possibility that the baby inside me—our first daughter—would be born with a bleeding disorder as well. I secretly prayed she would be born “normal” and that our glimpse into the world of bleeding disorders was only meant to be temporary. I didn’t want any part of that world.

Our Journey With This Community Begins

I hate the word “normal.” What is normal, anyway? I hate that I thought I wouldn’t be happy if I had another child with a bleeding disorder, because my daughter is everything I ever wished for and more! On February 16, 2009 (ironically, Ethan’s due date), Annika (Niki) was also born with severe factor VII deficiency. And so began our journey as permanent members of the bleeding disorders community. Niki is alive today because of Ethan. Things have come almost full circle, but not quite. My circle feels crooked sometimes, because my life isn’t as perfect as it once was.

However, this imperfection is also bliss. We are happy. Forget what’s perfect. Forget what’s normal. I’m the exhausted mother of four children, two “normal ones” and two with “special blood.” Being a member of the bleeding disorders community constantly teaches me something new about my husband, my children and me. I can’t describe who I am because I’m still evolving as a person every day. My journey isn’t over yet.

So, I suppose my message to you, dear blog reader, is that you’ll get to know who I am as you read about how I navigate through this journey. Welcome to my world! I am so proud to be a part of yours.

Read more about Tiffany's life at The Art of Lion Taming.