This Blog is Helping Cure JM

Kevin of  Always Home and Uncool has asked me to post this as part of his effort to raise awareness in the blogosphere of juvenile myositis, a rare autoimmune disease his daughter was diagnosed with on this day seven years ago. The day also happens to be his wife's birthday. 

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Our pediatrician admitted it early on.

The rash on our 2-year-old daughter's cheeks, joints and legs was something he'd never seen before.

The next doctor wouldn't admit to not knowing.

He rattled off the names of several skins conditions -- none of them seemingly worth his time or bedside manner -- then quickly prescribed antibiotics and showed us the door.

The third doctor admitted she didn't know much.

The biopsy of the chunk of skin she had removed from our daughter's knee showed signs of an "allergic reaction" even though we had ruled out every allergy source -- obvious and otherwise -- that we could.

The fourth doctor had barely closed the door behind her when, looking at the limp blonde cherub in my lap, she admitted she had seen this before. At least one too many times before.

She brought in a gaggle of med students. She pointed out each of the physical symptoms in our daughter:

The rash across her face and temples resembling the silhouette of a butterfly.

The purple-brown spots and smears, called heliotrope, on her eyelids.

The reddish alligator-like skin, known as Gottron papules, covering the knuckles of her hands.

The onset of crippling muscle weakness in her legs and upper body.

She then had an assistant bring in a handful of pages photocopied from an old medical textbook. She handed them to my wife, whose birthday it happened to be that day. 

This was her gift -- a diagnosis for her little girl.

That was seven years ago -- Oct. 2, 2002 -- the day our daughter was found to have juvenile dermatomyositis, one of a family of rare autoimmune diseases that can have debilitating and even fatal consequences when not treated quickly and effectively. 

Our daughter's first year with the disease consisted of surgical procedures, intravenous infusions, staph infections, pulmonary treatments and worry. Her muscles were too weak for her to walk or swallow solid food for several months. When not in the hospital, she sat on our living room couch, propped up by pillows so she wouldn't tip over, as medicine or nourishment dripped from a bag into her body.

Our daughter, Thing 1, Megan, now age 9, remembers little of that today when she dances or sings or plays soccer. All that remain with her are scars, six to be exact, and the array of pills she takes twice a day to help keep the disease at bay. 

What would have happened if it took us more than two months and four doctors before we lucked into someone who could piece all the symptoms together? I don't know. 

I do know that the fourth doctor, the one who brought in others to see our daughter's condition so they could easily recognize it if they ever had the misfortune to be presented with it again, was a step toward making sure other parents also never have to find out.

That, too, is my purpose today. 

It is also my birthday gift to my wife, My Love, Rhonda, for all you have done these past seven years to make others aware of juvenile myositis diseases and help find a cure for them once and for all.

To read more about children and families affected by juvenile myositis diseases, visit Cure JM Foundation at www.curejm.org.

To make a tax-deductible donation toward JM research, go to www.firstgiving.com/rhondaandkevinmckeever or www.curejm.com/team/donations.htm. 

My girl'z got guts!

Remember my super model daughter?  

Well she had a room.  In Hawaii.

And this is how I will always remember it.











I took these pictures last Sunday before she left on a jet plane to fly away to Utah.  

Forever.

This ceiling fan was the only thing I enjoyed trashing IMMENSELY, since it was really good at giving us an earful of noise, but not so good at giving us any AIR FLOW.

Ba Bye celing fan.

"Mom, you're so emotional!" My daughter said as we were pulling out of the driveway to take her to the airport. 

Good thing she didn't see me taking all these pictures.  

Or sitting on her bed for the last time watching her sleep earlier that morning. 

"Bye house," she said as we pulled out of the driveway. 

"Bye townhouses," she said as we drove down the street. 

"Bye BYU." 

"Bye Laie." 

"Bye beach." 

That's when I turned around and smacked her upside the head.  And she stopped. 

This is my daughter's room now.

SNIFF!

I miss my daughter!!!!

And her room!!!! 

SNIFF! 

(I know families are forever, but my heart aches for anyone who loses a child too soon.)

One of the last nights she was here I sprawled out on her bed with her and did something we've never done together before.  Watched CSI.  Or was it Bones.  Or was it Cold Case?  Or L.A. Ink? I can't remember.  I don't love any of those shows.  But we were together.  On her bed.  In her room.  For the last time. 

My hub kept calling for me to come look at some house on the internet, but I just ignored him, because when you're about to finish a really good book, you want to savor the ending.  Even if ends with CSI. 

My daughter left for Utah a week before us so she could start practicing with her new High School soccer team.

She started practicing 3 hours after she arrived, (which wasn't easy because we don't do red blood cells in Hawaii.)  

And then she played in her first varsity game the next day.  

And we missed it. 

Because we're still in Hawaii stuffing the last 10 years into polite little boxes.  

We talk every day and I ask her how she's doing. 

"I can't breathe, but I'm fine," she says.   

Not only is she a super model she's a super trooper.  I can't imagine at 14 years old--moving away, without your fam, a new high school, a team of strangers,  3 hour practices every day.  

And NO AIR! 

At least she's got GUTS! 

LY daughter of mine!  

Thinking of you (and all your friends).









And thinking of you (and all your soccer girlz).






Can't wait to see you next week!

The Five People We Meet in Heaven

Reading this book is a great way to cope with a Christmas in Kauai with the in-laws. 

Watching the movie is an equally great way to cope with PVBD (post vacation boredom and depression).  

Needless to say I watched the movie this past week and found myself scribbling down all the movie wisdom.  

The premise is intriguing--an 83 year old man named Eddie, who spent his life doing maintenance at an amusement park called Ruby Pier, is killed while pushing a little girl out of the way of a falling carnival ride.  

At the time of his death Eddie was disappointed with life.  He was a soldier who was unable to get the war out of his head.  He resented his abusive father and blamed him for his own wasted life being stuck as a maintenance man.   And finally he lost the love of his life to early to a fatal illness.

In the after life he is told that there are five people waiting to meet him.  Each will illuminate something for him in Heaven that he didn't understand on Earth.  

All of the people waiting to meet and teach him have either been effected by him somehow or vice versa. Three of them are strangers and he is responsible for two of their deaths.

When he first arrives in heaven he is unable to talk so he can better listen.

These are the lesson Eddie learns as he closes his mouth and opens his mind:  

1.  There are no random acts. 

2.  We are all connected. 

3.  No life is a waste.

4.   Life has to end, but love doesn't. 

5.  Hatred is a curved blade--the harm we do to others we also do to ourselves. 

6.  Sometimes when you think you're losing something you're really just passing it on to someone else. 

7.  Sacrifice isn't something to be ashamed of, it's something to be proud of. 

8.  Strangers are just family we have yet to come to know. 

9.  Everyone deserves to be forgiven.

After Eddie learns these lessons he is taken to Ruby Pier where he is greeted by all the people he protected and kept safe simply by maintaining the park and preventing accidents. Their children were there too, and their children's children.  

What a sweet realization.  

It's the very reason I love the finale of the musical Les Miserables so much. Every time I see it I get a lump in my throat when Jean Val Jean dies and is greeted by all the grateful people he effected. 

During the daily grind of life it's hard to remember our significance in the lives of others.   It's so easy to feel isolated and alone and forget that each life effects the other,  and the other effects the next.  

And the world is full of stories, but the stories are all one.  

Kinda makes me want to pour myself a cup of hot chocolate and watch It's a Wonderful Life.  

Earn it!

Tonight, while channel surfing, we caught the last 10 minutes of Saving Private Ryan--the part where Captain Miller dies just after he whispers "earn it" in Private Ryan's ear.  

So poignant, that scene.  Think about it.  There's a big war going on and a group of men risk everything and face extreme dangers to save one private. 

One single man.

How many men died to complete the mission?  I can't remember.  And all just so one man can return home safely.  Was it worth it?   

I love that Private Ryan appreciates the sacrifice and spends his life trying to earn it. 

It makes me wonder how much more I would appreciate and accomplish if I remembered on a daily basis all those who have made sacrifices on my behalf.

I can't help but think of the great sacrifice our Savior made so that I might live and return home safely.  Imagine what would life be like if I was humble and mindful enough to acknowledge that sacrifice by working diligently to earn it.

A New Years Prayer

I have learned that once in a while people need to know you're human.  

People, I am definitely human.

In fact today I was way too human. It was a painful emotional day simply because I cleaned out and organized all of my kids past photos and awards and school projects.

Oh, how each little letter and drawing and expression on their sweet faces pricks at my heart. I miss those cute babies of mine sooooooo much. I wish I could go back and hold on to each moment--stop them from slipping away like water through a net.

It's also difficult to remember some of the hard times. It's especially hard to see photos of myself right after my twins were born.  (They were born at 29 weeks and spent 6 weeks in the NICU). 

I found the cutest little note in my daughters stuff that made me cry. It must have been written when she was in her early elementary school years. It read:

Oh Heavenly Father, please help my mommy. She's so frustradid. Thanks. You are the best. I love you.

I also came across this prayer I gave out with a homemade Christmas angel the year after my twins were born.  I gave this to all the people who looked after me and my family during the challenging weeks they were in the hospital. 

A New Years Prayer

Dear Lord,

Please give me a few friends who understand me,

and yet remain my friends.

A work to do which has real value, without which

the world would feel the poorer.

A mind unafraid to travel, even though the trail be not blazed.

An understanding heart and a sense of humor.

Time for quiet, silent mediations.

A feeling of the presence of God.

And the patience to wait for the coming of these things

with the wisdom to know them when they come.

--W.R. Hunt.

What more could anyone ask for?

A guest post from my twelve year old

My twelve year old son is writing his autobiography for his English class. This is the son who I call the other pea in my pod (except he's annoying and I'm not). See what I mean in this post and don't forget this hilarious post.

Every day he comes home from school and pumps out these cute stories about his life. I'm going to post the little blurb he wrote today summarizing his elementary school years. See if you can't see the little dummy inside him emerging already.

(I bleeped out the teacher name on purpose, for obvious reasons):

The elementary school I attended was Laie Elementary. I went there for all seven years. Kindergarten-sixth grade. Everything was running smoothly. I was having so much fun having nap time all day. Same thing in 1st grade. But then in 2nd grade it all happened. I had Ms. _______. Ms. _______ was good. It wasn’t her. It was SFA. SFA was a reading program. Dude! It was so boring! Crazy boring. Reading all the gayest books for like 3 hours. I hated it and I had to go through it for like 5 years.

That’s not all that happened in 2nd grade. This was a scary memory. It started on the last day of school. We were having a party and I needed to go. The bathroom I went to was a small bathroom. Only 1 toilet. So I walked in, shut the door and did my business. I washed my hands and tried to open the door. It was locked! So I’m stuck in the bathroom on the last day of school. I’m in there for about an hour.

After the first twenty minutes it was getting hot. There were no windows. I seriously thought I was going to die. I started yelling and pounding on the door. Finally, after about 30 more minutes, my best friend Kameron saved me. My teacher must have finally noticed I was missing. I was so sweaty when I got back to class that everyone was fanning me off with their text books.

I do have some good memories of Elementary school. I loved my 3rd grade teacher, Mrs. Ah Sue. She was really funny. I also like Mrs. Aluli, my 5th grade teacher and Mrs. Tuliloa, my 6th grade teacher.

The best part of Elementary school was the field trips. I really enjoyed camp Erdman in 3rd grade. Hearing those scary stories gave me nightmares for like a week. Another great field trip was our Big Island trip. It was really fun hanging out with my friends, but the best part was learning amazing stuff about Hawaii. In 5th grade we got to sleep over on the U.S.S. Missouri. It was different to sleep in a ship. It was a really interesting field trip. My last, but not least, favorite field trip was box car racing. We drove a little mini go carts racing our friends. You have to admit that’s pretty awesome.

Those are some of my good memories that happened in my elementary years. But, all in all, I really loved elementary.

I'm In A Georgetown State of Mind

My English class is reading Tim O'Brien's The Things They Carried and we're talking about things that haunt us.

So in regards to ghosts, and in honor of Ellen Hopkins--NEW YORK TIMES BEST SELLING AUTHOR-- for commenting on my Monster post yesterday, I wrote a poem.

(Do you know how long it's been since I wrote a poem?)

I wrote it Ellen Hopkins style, but blogger doesn't support the format so let me explain it to you. The lines in between each stanza are supposed to be justified to the far right. Those lines must be read as part of the main poem, but they also make up their own poem when read alone.


Last summer

I spent a whole day alone, wandering
the streets of Washington D.C.
Just me. And my ghosts. It was

lovely to see

them again--to give them my
undivided attention. We caught
up over Philly cheese steak on

street corners

then took a taxi to Georgetown
where we strolled arm in arm
past bloodshot windows,

neck and neck,

as if through a Coldplay song—
The Scientist, maybe,
Or Keane’s Somewhere

Only we know--

and feeling like a kid at Christmas,
flipping through mom’s Ideals
magazines and wondering

what it was like

to live inside snow-capped cottages with
roaring fireplaces and smells of nutmeg
and cinnamon sticks. How would it be

to have plenty

of hot apple cider, divinity and love?
Georgetown is like that when you
wander through it. It's almost enough,

but not quite . . .

and it strikes you that here you
will come together, but also separate.
You are in this world, yet it is not quite

enough

in you. I love you, it whispers,
but I don’t know where to put you.
I wish I had the courage to ask it not

to put me away.

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!

My Magical Day with Epeli Hau'ofa

Two summers ago I travelled to Fiji and New Zealand with a group of professors and librarians from BYU-Hawaii. I was like a kid in a candy store. Ask them all. The trees, the clouds, the people . . . I couldn't soak it up fast enough.

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!

Click here to read the Newsroom article I wrote about USP and Epeli Hau'ofa.

But be prepared to NOT recognize me AT ALL.

Click here to read the announcement of his death.

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!