About my serious side

Not to break the spell or spoil the fun, but you've probably figured out my real name isn't Dummy.

The CTD Diaries is my playground. No one tells the truth in their diaries anyway so I figured I should find another place to get real, where the head lights aren't so bright. I originally thought this would be a good place to post my creative writing, but I think this is just a good place to tell the truth.

Wednesday, January 28, 2009

So Lucky I Have Hemophilia!

This is my son, Wyatt:

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!”

. . . . . . . . .

Here are some photos of all the things my dad never got to do.

Sorry Dad.

LY Dad!


April said...

So lucky he has you for a mom too! I love it when we can make trials into strengths! It's so freeing!

Kritta22 said...

WOW! That's sooooo awesome!
I have the non-hereditary form of hemophilia. It's called ITP. I have the same signs and symptoms or hemophilia but caught it from a cold, kinda. If you care to you...I'll explain it to you, if you, the genius professor that knows all, doesn't know.

I love modern medicine. What a miracle to only have one of your babies have it.

You go, Wyatt! You are a superstar!

Sandi said...

Mr. Wyatt is adorable! I'm so glad that so much progress has been made and that your sweet boy gets to do all the fun stuff!

Amanda said...

what an awesome post! and how lucky Wyatt is to have such a positive view on something that would only seem to be negative...speaks well of positive parenting, Crash :)

Heidi Ashworth said...

I hope that one day I can look back and know that I did as well with my special needs son as you have with yours. Way to go! (Not to imply that your son is as needy as my Big Guy. The Big Guy is pretty darn needy. And special.)

IWA said...

... The more I find out about you,the more humbled I am to know you! (sniff, sniff)!

Great Article! Who knew? I know it's not something you tell every passing Joe... but wow... So glad for modern medicine!

david mcmahon said...

I'm a parent - and this post captured my attention and captured my heart.

ArneA said...

Great post, and congrat with potd

Fat, frumpy and fifty... said...

well written and well done on POTD.

Am over from Davids

I am LoW said...

Remember when I posted about my son's chronic illness and you told me about your sons chronic illness but then said my sons chronic illness was worse? You lied. :-)

It sounds like your son is doing great! And your family too. With it all. How very awesome that is!

And was a great article you wrote! COngrats on having it published!

RiverPoet said...

I found you through David's blog.

My nephew has hemophilia - Factor VIII deficiency - and I'm very familiar with Bloodstone magazine, because he stayed with me for a summer. He was quite familiar with how to give himself infusions. It amazed me.

And you, my dear, are an amazing mom!

Peace - D
(p.s. - sorry about your father)

Nutty Hamster Chick said...

I agree with everyone else about your amazingness. I feel kind of lame to complain about my son's illness that so far has only been for 6 months, when others face things for their whole lifes. Shouldn't I be more grateful for the 14 healthy years?

OldBoatGuy said...

Awsome post, Crash. For a man (me) who doesn't catch anything or have anything bad happen to me, I wonder how others cope with some of their problems (blessings).

God bless you and yours, and all others who go thru life with problems we will never hear about.

val of the south said...

I'm with April, he's so lucky to have you for a mom! For not filling him with fear, but freedom. Well done Crash.

nevadanista said...

Wow...what a great outcome for your son and family.

I'm guessing you've read 'Nicholas and Alexandra', but if you haven't, you might be interested in how hemophilia played a part in the Russian Revolution and WWI. It's one of my top all time favorite books.

binks said...

Your son is very lucky to be living in this day and age of medical miracles. I remember my cousin and uncle dealing with this when I was a young girl and the fear that was associated with this condition. Many blessings to Wyatt and a wonderful, active, full life.

Stephen said...

Well written. I am so glad your son has had a more active life than dad had. He has such a positive attitude too. Poor dad.

Wendy Christensen {Moments Like This} said...

This was an inspiring post - Thanks :)

Eric-n-Ali said...

Debbie, I love the way you write! That was very inspiring! Thank you for sharing!

The Rogers Family said...

Thanks for not adding anything in about the summer he broke his leg. He was incredibly tough, and I have had great respect for him ever sence. I love your kids and wish your family lived closer. Give them all a high five from their Uncle John for me. it's always interesting to hear my brothers and sisters take on dad. I was so young I have very few memories.

in time out said...

what a beautiful post. thanks for sharing. and such beautiful pictures. what a great boy, and terrific mom.

Rance Wright said...

Thank you so very much for stopping by and for helping to make a difference!


Rance Wright

Crystal said...

i have this blood disorder plus more.. and im a girl and girls rarly get it... it helps me to know that theres others out there who have the same problem... sometimes it feels like its just me