About my serious side
Wednesday, January 28, 2009
He has hemophilia.
This is an article I wrote about him for Bloodstone magazine:
In Hawaii, the locals often say, “Man, so lucky we live Hawaii!” My kids say it a lot after a fun day of snorkeling or boogie boarding, but I never thought I’d hear my ten-year-old son say, “Man, so lucky I have hemophilia!”
Growing up in a cloud of hemophilia anxiety never made me feel the least bit lucky. Nothing about my childhood was predictable, safe, or secure because my dad had severe factor IX deficiency (Christmas disease), which translated into his inability to hold a job, nurture his family, or finish his education without being interrupted by a bleed.
For him, a bleed meant long hospital stays with whole blood transfusions, uninformed doctors, and chronic pain. At 36 years of age he was battling a hard-core addiction to pain medication and had contracted HIV from a contaminated blood transfusion. He took his own life in 1982 when I was 14 years old, leaving me his deep-seeded fear of what the future held for hemophiliacs.
Twenty five years and four children later, my fear has been replaced with gratitude—gratitude that clotting factor is now synthetic and sitting at my disposal in the back of my fridge; gratitude that my son can kick a soccer ball or shoot a basketball with his brothers; and gratitude for the care, concern, and support of a strong hemophilia community.
Of our three sons, only one, Wyatt, was born with hemophilia. He came into this world, along with his twin brother, fighting for his life at 29 weeks and 2 lbs. I’ll never forget my husband leaning over me and crying as I was coming out of my emergency C-section.
“Are you ready to hear this?” he asked. “Wyatt has hemophilia.”
“Let’s hope he likes computers,” I said.
But he liked sports, and in a fiery way. We predicted he would the moment we set eyes one him. While his brother slept peacefully in the incubator beside him, Wyatt’s eyes were wide open, and his determined spirit jumped across the NICU to greet us.
My husband and I became proactive right away because we wanted Wyatt to feel uninhibited by his disease. We didn’t want him to see it as a disability full of limitations and restrictions. We taught Wyatt to confront his hemophilia head on and prevent injury with prophylaxis. From the time he was one year old, we have been infusing him with clotting factor every 4 days, at first through a port and now intravenously. Over the years, he has sustained a few injuries complicated by his hemophilia, but, for the most part, the consistent prophylaxis has enabled him to protect his joints and stay healthy.
Now he’s an active kid who plays year-round sports. He’s on a local basketball team, soccer team, and tennis team. He has also played on baseball teams and run track. Every year he competes in his school’s annual Thanksgiving foot race where he finishes in the top three. He rides bikes, rip sticks, skate boards, roller blades, and water skis.
Synthetic factor has given Wyatt the gift of a normal, anxiety-free life, as well as the opportunity to develop his athletic talents and be part of a group in ways that were never available to my dad. And, as an added benefit, our family has been welcomed into the hemophilia community with open arms. Wyatt’s community advocate from Accredo’s Hemophilia Health Services—Bonnie Webb—frequently sends packages to my kids, and, whenever we‘re in the same state, she takes us out for pizza.
All of my kids have been able to participate in hemophilia summer camps and have been invited to educational workshops and conferences where Wyatt gets to interact with other hemophiliacs his age so he knows he’s not alone. This past Christmas, our family was in high spirits on the way home from a hemophila party at Dave & Busters, where we spent the evening having fun with other hemophiliacs on the island. Wyatt got thoughtful for a few minutes in the car before he said, “Man, so lucky I have hemophilia!”
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Here are some photos of all the things my dad never got to do.
Thursday, January 15, 2009
Someone snapped these photos of me from the van.
Yes, I stuck my head out the window and snapped photos all day.
And then I scribbled out articles all night.
It was heaven.
One of the most exciting moments of the trip was meeting an author who I adore, Epeli Hau'ofa. He made me think deeply and laugh whole heartedly.
I found out last night that he died on Sunday, January 11th.
Today is his funeral.
I can't describe how I felt when I heard the news--sad that he's gone, happy that he was here, grateful that I got to meet him and interview him and take photos of him before he passed on.
I love it when people have a profound impact on the world around them. Epeli Hau'ofa was like a mental meteor in the Pacific.
LY Epeli Hau'ofa! And God bless!
But be prepared to NOT recognize me AT ALL.
And to see how much better my photos of him are then the one The Solomon Times chose to print. (Hello! They coulda asked me.)
And look how totally star struck I am interviewing him and getting my favorite book, Tales of the Tikong, signed by him:
And here are some photos of the incredible creativity pouring out of the Oceana Centre for Arts and Culture that he founded and directed:
Aloha Oe, Epeli . . .
Oceania will miss you!