I thought my life’s work was complete at age 33 when my book Raising a
Child was published. It took eight solid months of grinding work, not
helped by the fact that there was no Internet, or decent word processing software
in 1990. I actually had one of the first Apple computers, with a whopping 128 MB
of memory!** And now I had a full-time job as an economist, a three year old
with hemophilia and a darling newborn daughter!

But life had other plans. A mom from North Carolina, Sybil, wrote to me (and I mean wrote, like a paper letter; no emails for us then!) a wish: wouldn’t it be nice if we could somehow keep the exchange of parental stories going? Like in the book, which included the quotes of 120 different families with hemophilia. It was the first time in history that families with hemophilia could read all about their disorder and share in the experiences of other families.

Sybil thought a newsletter could keep the stories going. Great idea. But how?

At the same time, a woman named Mary Ann Barth, a cofounder of Quantum Health Resources, the homecare
company that shipped my son’s factor, got a copy of my book. She like it so
much she called me and asked if Quantum could support some initiative of mine. Perhaps
another book? Of course, Quantum wanted to put its name and logo on such a book,
the way Armour Pharmaceutical did. And why not? These companies paid for the research, writing and publication. We then gave away the book. No royalties; no one profited. All the companies asked for
was to have their logos on the covers as an acknowledgement.

I’m a businessperson, and I got it. It made sense. Like Nikon sponsoring the Olympics. Happens all the
time.

I suggested a newsletter to Mary Ann (not yet knowing how I would accomplish this) and she happily gave me
a few hundred dollars to get sponsored. I only had 120 families on my mailing list, the ones who contributed to the book. I called my new venture The Parent Exchange Newsletter, because it would primarily be an exchange of parent and patient information, much like the groups on Facebook do now. My resources were limited. I cut and pasted paper submissions, and photocopied each newsletter and stapled them. I mailed them and “PEN” was born! Primitive but effective!

After a year of this, Mary Ann wisely suggested to let their promotional group help with the design. They designed a simple but professional look to PEN. I submitted my articles, and they did the layout and printing. We branched out to start writing about topics, not just publishing family letters and photos.

Working by day as an economist, full-time mother from 5 pm to 8 pm, then working on my newsletter each quarter. We mastered home-infusion when my son was two so we were no longer tethered to the HTC.

My biggest break came when my colleague Rob Partridge, then Monoclate-P product manager at Armour, who had approved my book and got me started, asked me to publish another book. The first book was so successful; we had to do another printing soon! Families were
calling Raising a Child With Hemophilia their hemophilia “Bible” and my mailing list grew with each family that wrote to me. More shared their stories, watching to be heard.

Another book! But about what?

As my own children were growing, I (who had a degree in child psychology and also had published research on own children understand health and illness at different ages) realized that as I read each night to my children books like The Hungry Caterpillar, Horton Hears a Who
or The Magic School Bus, there were no books for children on hemophilia. Understanding how children learn to read, and process their world at different age groups, a branch of psychology known as developmental psychology, I felt equipped to try to write a children’s book on hemophilia, to help children understand. Indeed, ideas just came to me as I lived with trying to teach my own son about his disorder in a way he can understand.

I proposed to Rob some children’s books ideas, and he loved it! He approved. I also could sketch and
used to paint, so I was author and illustrator. I thought of a book or poems explaining hemophilia to preschoolers in a fun manner; a history book about Alexis, son of the last Russian tsar, a story which might have changed history forever. Remember I was reading Peter the Great while in labor with my son. I loved Russian history and wanted everyone to know why hemophilia is called the Royal Disease, and then to know the story of how hemophilia changed history, and created modern history. None other than Suzamme Massie, who helped write the Pulitzer Prize winning Nicholas and Alexandria, and whose son has hemophilia, helped me!

I realized that by lining up some contracts for my newsletter (funding from Quantum) and my children’s books (funding from Armour Pharmaceuticals) a dream was born: I could stay home with my children. I wanted nothing more than to be a stay-home mom. I had worked so hard, day and night, doing what we called “The Mommy Track,” trying to be a dressed up businesswoman by day, mom by late afternoon and early evening, and now entrepreneur each evening, I craved to be home to play with my kids in the sunshine, take them to the park, to museums, the Boston Aquarium, make them lunches and relax a bit.

 

With a year’s worth of book contracts, I realized I could quit my job, thus saving a fortune in daycare, professional clothing and dry cleaning, and gas. And make a little bit of money on the side. I had paid off my debts and was ready to enter full time motherhood, with some side projects.

In July 1991, I quit my job at the economic forecasting company, waving good-bye to my colleagues of six years, grateful for all the business, contracts and number-crunching experience I had. These would prove valuable to me as my own business grew. PEN continued
to grow and became focused on teaching, rather than just sharing. And we had a new children’s book called Just a Boy, modeled after Dr. Seuss books. And more would come.

Best of all, I was able to spend a whole summer with my four-year-old son and one-year-old daughter. We lived in an ancient home in a crowded neighborhood—just ten steps and you had traversed the whole house! But we didn’t care. We were home, healthy and making a difference.

** My computer? Macintosh II, the first Apple with color graphics. It features 16 MHz 68020 processor, and 1 MB of RAM. A basic system with one 800 kb 3.5-inch floppy drive, sold for about $1,3900. Ouch. But I am still a loyal Apple customer.