Diary of a HemoMom

We’re used to experiencing small earthquakes here in California, but fear of “the big one” is always there. I’ve come to realize the death of a loved one is a lot like a devastating earthquake—you know it’s coming, but you don’t know when. Preparedness is the best defense when disaster strikes, so emergency survival kits are a must in earthquake country. And in a sense, I suppose, I emotionally prepared myself for death in the same way. I knew I would lose my parents and grandparents someday, so I had my own “emotional emergency survival kit” packed and put away for safe-keeping. You expect these sorts of losses to happen, because death is a part of life.

The first earthquake I experienced was the Loma Prieta earthquake on October 17, 1989. I was 7 years old when it rocked the San Francisco Bay Area. My sister and I were home alone when it happened, and the experience traumatized me. My mother...

Parenting would be so much easier if children came with instruction manuals! The years are going by lightning fast, and we’ll be left with an empty nest before we know it. This means John and I have only one shot to do this “parenting thing” right. I’m a planner by nature. I feel an odd sense of comfort knowing I have multiple backup plans for my backup plans. And this was how I functioned before I entered HemoMommy Land!

Maybe I’m a bit of a control freak, but you kind of have to be that way when you’ve got small children to care for. I like to be prepared for the unexpected. When Niki was first diagnosed, I didn’t have quick access to books on bleeding disorders. So, when I wasn’t at her bedside in the NICU (neonatal intensive care unit), I was in the hospital lobby using the Internet to research everything about her emerging treatment plan. Researching gave me a sense of control over a situation I had no control over.

Eventually, I...

I was in a meeting when it happened. I peeked at my cell phone vibrating in my pocket and recognized the number immediately. My genetics counselor was calling, and I knew the results of my amnio had finally come in. I hurriedly stepped out of my meeting to answer the call, hoping I would pick up before my voicemail did. My heart was pounding. The results would define my birth plan, alter my daughter’s destiny and possibly change the lives of our entire family.

The first few seconds of the call were a blur. My genetics counselor went over the clinical data and the mutations the laboratory searched for. I felt the adrenaline coursing through my veins. I’m usually very savvy when it comes to medical speak, but my brain was struggling to decipher what my ears were hearing. Then, she said it…

“Your...

I had my amniocentesis a few weeks ago, and the results can’t come soon enough. My genetics counselor told me it would take a few weeks for the laboratory in London to complete testing the baby’s DNA. I’ve tried my best to be patient, but it feels like time is moving slower than molasses these days. I just want to know if this baby has a bleeding disorder already!

Having an amniocentesis was a completely new experience for me. I didn’t like the idea of a needle being slowly inserted into my abdomen, but I knew it had to be done. I don’t do well with pain, so I was very nervous. Lucky for me, the nurse who assisted with the amnio did some “sensory redirection” to help ease my discomfort. The further the needle was thrust into my abdomen, the more vigorously she massaged my calves. This technique helped quite a bit. It was odd to feel comfort and pain simultaneously, but in retrospect, I...