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Diary of a HemoMom

Please excuse my blog hiatus. I was preoccupied with attending the National Hemophilia Foundation’s (NHF’s) Annual Meeting in New Orleans, November 11–13, so I fell a bit behind with my writing. There is so much I want to write about, but it’s difficult to condense the entire experience into a single post! As a matter of fact, it may take a few posts for me to write everything I want to about our experience at this year’s Annual Meeting because, yes, I was that inspired!

We were quite fortunate that last year's meeting (the first year we attended) was on our very own stomping grounds in San Francisco, so we knew where to find cheap parking and good eats. Although I was very excited about going to NOLA, venturing into a different city made me a bit nervous, too. I don’t travel often—my last trip on an airplane was in 2005—so flying makes me nervous. John thinks my fear of flying is silly, considering that I...

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...

There is something amazing about ending up with your high school sweetheart. Twelve years doesn’t seem like much, but it’s a long time if you think about all the life stages I’ve gone through with John. Sometimes I look back and can’t believe how much time has passed! We’ve grown up so much over the years that I’m amazed we haven’t grown apart.

John and I started unofficially dating in May 1998, one month before my 16th birthday. Back then he had peach fuzz on his upper lip and smoked cigarettes, and although I’ve heard his voice practically every day for the past 12 years, I’m sure his voice was much higher then, too. John’s personality reminded me a lot of Dally, my favorite character from S.E. Hinton’s The Outsiders. John wasn’t violent, but he was a “bad boy” nonetheless.

John transferred from a different high school because he got into a lot of trouble when he lived in the...

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...

Niki is your typical 19-month-old toddler. Yes, she has a rare bleeding disorder, but it doesn’t define who she is. However, more often than not, people are interested in “Niki the bleeder” more than “Niki the toddler.” It’s understandable—her factor VII deficiency is fascinating—but she still plays, eats and has tantrums, just like any kid her age.

It’s not that I’m offended when people ask about her bleeding disorder; it’s just that I still want to swap stories about normal stuff. Mothering a little girl is new to me. I want to talk about mindless things like different ways to fix her hair or Niki’s rapidly emerging terrible twos. I am exploring not only HemoMommy Land, but Mother-Daughter Land, too!
 
I’m not without fault, though. I’m guilty of being quick to talk about what it’s like to raise “Niki the bleeder” because I like to...

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 took a physiology class when I was pregnant with Ethan. It wasn’t my favorite class, which, of course, means I haven’t retained much of what I learned. However, even though it has been nearly three years since I took physiology, I still remember that our ability to associate scents with specific memories occurs due to a link in the limbic system, otherwise known as the “emotional” part of the brain.

Scents can conjure up vivid memories, which can set off heavily rooted waves of emotion, depending on what we associate with that particular scent. Sometimes, smell will make us remember things we have forgotten. Even though I detested that class, I suppose that particular concept has stuck with me, because I had a real-life physiology refresher shortly after Ethan passed away.

Ethan was home for three...

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...

I have been spoiled with good health insurance for the past seven years. I work for a large healthcare organization here in California. We’re unionized and have excellent benefits. Oh, how I love and appreciate my job. Even though I’m but a “lowly” medical assistant, my health insurance is better than John’s. And he works in upper management for a big corporation in the financial district!

But I didn’t always have good insurance. When I was 19, working and going to school part time, I had no insurance at all. I tried to purchase insurance privately, but I was denied by several insurance companies because of my preexisting condition: asthma. I ended up having zero insurance for almost three years. Without preventive inhalers to keep me afloat, my asthma went haywire and landed me in the emergency room on multiple occasions. It was a mess, and my personal finances haven’t been the same since.

[Steps...

My second son, Anthony (Boo), was diagnosed with severe expressive speech delay shortly before his second birthday. I noticed Boo’s language development was significantly more delayed than his brother Kevin’s, but I kept attributing it to Boo being a late bloomer.

I mentioned my concerns during Boo’s well-baby doctor visits, but his pediatrician (who is wonderful, I might add) didn’t want me to obsess over deadlines that baby Web sites had set. I let it go, but something was nagging at my heart. By the time Anthony was 15 months old, he was barely beginning to babble, and he still couldn’t say “mama.” By this time, Boo’s pediatrician agreed it would be wise to have him evaluated.

At first, autism was a concern. After countless appointments, meetings, mounds of paperwork, and several months of waiting, Anthony finally got his diagnosis: severe expressive speech delay. More important, he got a referral for intensive speech therapy. John and I were relieved that Boo was...