Happy Holidays Every One

Current favorite: Green Eggs and Ham.

"I would not like them here or there! I would not like them anywhere!"

"Try them, try them and you may. Try them and you may, I say."

Fresh from the tub sporting her fancy new robe.

Warming up to Santa by approaching Blitzen first.


Hurray, success = first time on Santa's lap and no crying!
(I'm pretty sure Helen is telling Santa she'd appreciate it if he'd put a bit more effort into his outfit next year.)

We are so thankful for the roof over our heads, the clothes on our backs, the food on our table, Stew's steady job, our sense(s) of humor, our good health, our dear friends and family - that means you, each other, and most of all - our precious Helen.
How lucky we are!

Our best to you and yours!

Pause from our regularly scheduled program...

Lori Hermstad, a dear friend from my home town, has a precious daughter who is very ill. I've mentioned her before here on my blog. She recently wrote this letter on behalf of Alex and has asked her friends and loved ones to share it with everyone they know.
Here is her letter:

Hi, my name is Alexandria Hermstad but everyone calls me Alex. I have an identical twin sister named Jaci and we are 15 years old. I was always healthy but for almost 4 years now, I have been fighting an illness that nobody seems to know what it is or why it is happening to me. I live in Storm Lake, Iowa and I am paralyzed. I have to use a ventilator to breathe through a hole in my throat which sometimes gets plugged and I can’t breathe. I cannot swallow food anymore so my diet consists of liquids through a tube in my stomach. My mind still works fine and I understand everything that is going on around me. I can’t speak either, so my mom is helping me to put my feelings on paper.

Jaci and I used to love playing sports, riding horses, and snowmobiling. When I turned 11, I began having trouble moving my left arm. By the end of the year, I could no longer walk. We were told to leave our house because the cause might be environmental, so we left…we left everything! Our dog, Gracie, couldn’t even come with us. After 9 months and being in 3 different hospitals, I finally went home. Since my illness began, we have met so many caring people. We are very grateful for all those who have reached out and shared whatever they could give. I am very thankful for those who have tried to help me. But at the end of each day…I am still here.

Many times I want to scream, but I have no voice. Many times I want to hide away in my room, but I cannot move. I want to hug my family and tell them I love them, but I can’t.
I can still move a little corner of my mouth to answer “yes” questions. I can still cry and tears can still roll down my face, but I cannot wipe them away. It takes a long time to be able to communicate with my parents. Many times it’s very frustrating to get my thoughts across and then for someone to understand me. What is more frustrating is why do the doctors and researchers we have written to and who have the capability to help me, choose not to help me – like I don’t exist?

I want to do so much but because I am trapped inside my body, I can’t.

I have been ignored by almost everyone who has the power and knowledge to help me. I used to watch medical mystery shows and was always overwhelmed in seeing how a doctor on the show would come forward and do a little extra to save/help their patient. I don’t know why someone won’t do that for me…? What I do know is that my illness is “atypical” and not the obvious, which seems to be why doctors are so perplexed, but I can't get their attention to care enough to help me. I just need someone to care. Even Make-A-Wish denied my wish. St. Jude’s never even tried to help me. President-Elect Obama met me in my home, took his picture with me and promised to help me, yet I still wait. My own governor looks the other way. Nearly every national foundation and organization my family writes to responds back saying I don’t meet “criteria”. Every major news organization we write to ignores me. They must not believe 5 minutes is worthy of helping to save my life. Has our society come to the point that celebrities become a higher priority than rescuing a child with an extremely rare condition?Celebrities, foundations, politicians, physicians, hospitals, and the list goes on, does not find it in their hearts to get back to me. Why? What would you do for your loved one? All I want is someone with the power and knowledge, to help me. I have been rejected because I don’t meet criteria…how sick do I have to get to meet “criteria”?

Recently, a local charity has offered me and my family support by trying to help bring about awareness to my story in hopes it will save my life before it is too late. I am fighting so hard to survive, and even though my voice is silent, I AM SCREAMING ON THE INSIDE TO BE HEARD! PLEASE help me! So many people have told me they love me and they can show this by contacting everyone they know about me so my voice can be heard. There is strength in numbers. Something as simple as taking a few minutes to send a message to all the people in your mailbox could make a big difference.

I am also writing big newspapers. I am asking that all newspapers come together for one day to do something that is completely unprecedented; publish the same letter across the country so that all may hear my plea, on the same day, January 2nd; a fresh start to the new year.
It may only take a few minutes, but sharing my letter with someone, a simple random act of kindness, may very well save my life. Please prayerfully hope that I can celebrate another birthday… another Christmas…the day I prayed I would get to graduate from high school.
But even more- a miracle to share in God's glory.

I am respectfully and passionately asking people who have the power to move- to move for me. I am asking those who have the ability to scream, scream for me. I am asking those who have the capacity to talk, to be my voice.

Everybody tells me to, “keep fighting Alex”, so I do. I fight relentlessly…each hour of every day.
Now, I am asking people to fight WITH me and FOR me.

I don’t know why doctors won’t help me…will you?

Last summer, my family began “Alex’s Army”. Will you join Alex’s Army and help me by contacting my email at: alexsarmy@hotmail.com with suggestions and your ideas on how you can help me? Hopefully, and prayerfully, I can find someone who will be willing to help me.
Those who pray, please pray for me as my faith in God has helped sustain me in this battle.

Thank you and God Bless,
Alex Hermstad
www.caringbridge.org/visit/angelsforalex
http://www.youtube.com/watch?v=Lq6qotHIiCM

TWO!!

Happy Birthday, ladies!

Mom and daughter, born the same day a couple (!!) of decades apart.

Hanging out with Seabiscuit, modeling a cozy birthday outfit.

Personal hygiene is very important, Dora.

Comb harmonica?

Check out the super cute sock monkey slippers, man.

Helen and I had a great birthday! I'm so happy we get to share the day and I hope as she gets older, she'll dig this connection between us as much as I do.

Thanksgiving 2008

My dear friend, Matt, holding my girl.


My dear friend, Dan, me, and Matt mugging with H - borrowing Matt's glasses, striking her thinking pose.



Brianna, snack time supervisor!





Zach, the baby whisperer!

Check out the smiles on those two, Brianna and Zach. Helen and I can only hope that after years of exposure, the "Pokorny Photo Op Smile" rubs off on us.

Cleaning up after a long day of playing at Grandpa's.

Once again, we packed it in over Thanksgiving. Wednesday and Thursday were spent with good friends and the rest of the weekend was spent in Iowa with family. The car trip went better then it has, thankfully. We finally caved and got a DVD player for the headrest. I felt pretty guilty when I snuck a look over my shoulder and found Helen completely transfixed. She hardly made a peep for TWO hours. On the one hand, it was a beautiful thing no words can describe. On the other, it was a little disturbing to see her so absorbed. For two hours of no screaming in the car, I'm fairly certain I can get over it. Helen had a lot of fun with our friends and got tons of attention from her family. I've made a note-to-self about how awesome that is so the very next time I'm dragging my feet over driving to Iowa, I'll remember. Both Stewart and I grew up with extended families around us and we wouldn't trade that for anything. Our families live in Iowa. If we want Helen to feel the love, we've got to haul her little bum down there - she can't drive herself.

Weather permitting...we'll be back for Christmas!

"Turtle" is my favorite

It's like someone flipped a switch. One day, Helen was jargoning away but not saying much in the way of recognizable words. The next, she's trying to say what we say. In the past couple of days, she's added "purple", "sticky" (syrup) and "crazy" to her column of words even a stranger would recognize. These are her first words - not "milk" but "crazy". She hangs with me all day, after all. She uses sign language for most common words. If you've got a little one and are considering sign language, I gotta tell you it's pretty amazing. We started with the usuals like "more", "drink", "eat", and "all done" when we first came home. Since then, Helen knows and uses tons of signs for colors, household objects, and activities. Even better than that, she can convey most of her wants/needs through signing which helps with frustration - phew.

The other switch that's flipped is the one labeled "Helen wants to do it herself/Helen doesn't want to do it because you want her to do it". She wants to read books herself, she wants to shut the baby gates herself, she wants to put her socks on herself, she won't put on her coat, she won't sit in her car seat, she won't sit in a shopping cart, etc. This amazing time, with her figuring out how to do so many things and how to influence her environment, is so wonderful to witness and also completely aggravating. I'm learning so much about patience, allowing for transitions, and striking an appropriate balance between process and goals. There's nothing like a toddler for shining the brightest light possible on your short-comings. Helen teaches me a lesson about myself every day and for that, I am thankful.

Halloween 2008 - the best we could do

Capturing the moment...Helen in her lion costume, Halloween 2008

If we'd known better, we wouldn't have picked a costume that has to go over the head for a first-time costume wearer. Live and learn, first-time parents.

"Someone, anyone...help me get this thing OFF."

"Seriously. I want this off."

Fall images

Showing H how to hold the oats in her hand for the goat to nibble.

That's corn, folks!

After all that, washing up is a must.

Averie helping Helen with her shoe.

It's so hard to choose.

This one feels right.

Aliyah, Mary Ellen, Helen, Averie and pumpkins as far as the eye could see.

Close up of our girls - home one year with big sis, Aliyah.

Someone conveniently rolled all the good pumpkins to the side of the patch - nice!



Riding along with some of our choices.

Only interested in sitting NEAR the leaves, not so much jumping in them.


Not much of a tummy there, lady.

Hauling her pumpkin up the steps to sit it next to Dad's and Mom's.



Helen wouldn't put her coat on but she allowed these two layers - go figure.

For the record, that's a scratch, not a pick...THIS time.

Putting away the garden hose for the colder weather.

FAMILY DAY!!

One year ago today, we held our precious daughter in our arms for the very first time....

Helen...FINALLY!!

Happy tears.

I love this photo - what a sweetie.

Later that day back at the hotel, our first smile.

Daddy's girl, pretty much from Day One.

Like I said...!

Here's a little dance to celebrate our Family Day!

A week in the life...

Earlier today - it's chilly out there, people.

Whaddaya think, these, although they're doing an Andy Warhol thing to my hair?

...or these?

...or BOTH?


Hey Jennifer Beals, I just loved you in Flashdance!

It can't be all smiles all the time.

(FYI: Dad put down the camera and helped her right away!)

This is what H does now when we say, "Smile!" - oh dear.

Halloween photo-op from last weekend.

Autumnal photo-op.

Friday, October 3, one year ago, Stewart and I boarded a plane to China. Can you believe that? It's been a whole year. We really had no idea what was in store for us and neither did Helen. We were delighted and excited beyond belief but she had no clue what was about to happen on October 8, 2007. She woke up that day and one of her nannies dressed her in a new pink outfit and onto the bus she went. Five or so hours later, she was put in our arms. It was the most wonderful day of our lives, no doubt. For Helen, one of the scariest, I'm sure. Here we are, the three of us, 12 months later. We love each other beyond compare. We can hardly comprehend the wisdom of complete strangers so very far away in Beijing having the good sense to paperclip our photos to Miss Helen's photos. In that moment, three people were bound together forever, a family was made and a love affair began.

The good times, they keep on rollin'

Wearing dad's socks around the house, so cozy!

Who doesn't love argyle?

I walked into the kitchen the other day

and this is what I found...Ta-Da!

Slightly blurry pix of Helen's cute kicks. Remember how we bought tons of shoes in China?

"I'm outta here...oh, wait a sec...Dada!"

Last post I talked about what a hoot Helen is. Check it!