Hello again, friends! Please forgive my extended absence from the blogging world. I’ve been immensely busy these past few months and it has been difficult to set aside time to write. The good news is I’m back, and I’ve resolved to be better about maintaining this blog. There is so much that I want to update you on, but I think the best place to start is where I last connected with everyone – NHF’s Annual Meeting.
I’m a heavy sleeper, so getting up early has always been a challenge for me. During my pre-kid days, I specifically sought out jobs and college classes with later start times just to work around this issue. To my dismay, John wasn’t a morning person, either. Most weeknights we would stay up late simply because we wanted to “hang out.” It felt oh-so-lovely to sleep in! Unfortunately, we lost the luxury of lazily starting our day at 11 a.m. a long time ago. Once we started having kids, we had to get ourselves some good old-fashioned 9-to-5 jobs.
Time sure flies! It has been several weeks since I posted a blog entry, but it’s taken me some time to adjust to life with four little ones in the house. Being a breastfeeding mother sometimes gives you little time to do anything else, but it’s oh-so-rewarding at the same time. Breast milk is digested so easily by my precious infant’s tummy that I was literally drained from all the round-the-clock nourishing I had to do.
The death of an infant is not only tragic, but also a very confusing experience for people to process. A minority of our family and friends were under the impression that losing Ethan would somehow hurt less because we didn’t have the opportunity to “get to know” him. Some of those conversations took place even before we were forced to withdraw care.
Just in case you’re new to my blog, my daughter Annika (Niki) has severe factor VII deficiency. Although factor VII deficiency is said to be the most common of the rare bleeding disorders, I was told by a hematologist I met at the National Hemophilia Foundation’s 61st Annual Meeting that a deficiency as severe as Niki’s isn’t typically compatible with life.
In case you missed it, I was miserable during the final weeks of my pregnancy. So, imagine my relief (and pain!) when I realized my baby girl was finally on her way. I wasn’t 100% sure I was in labor at first. My contractions were painful, but inconsistent. This should explain why I let John drive 45 minutes away so he could play a round of golf with his buddy.
Last spring I received my sex educator certification from San Francisco Sex Information (SFSI), a nonprofit organization that provides free, confidential, nonjudgmental sex information. SFSI is the only organization of its kind and answers questions from all around the world via switchboard and e-mail.
I landed myself a trip to the emergency room a few days before we flew to the National Hemophilia Foundation’s (NHF’s) Annual Meeting in New Orleans, November 11–13. I had a severe allergic reaction that was bad enough for John to call 911. Oh, lucky me! I’m OK now, and the baby is OK, too, but I almost thought I wouldn’t be able to attend the conference. My allergist was leery about allowing me to fly after the scare, and my ultra-conservative ob/gyn strongly advised against the trip.