I got a call the other day from my publicst at Chicken Soup. This was funny because I didn’t know I had a publicist…but what the heck.

Our local paper wanted to do a story on the Blessing Bowl. The article came out this morning. You can read to story below or go to the Reporter Herald and check out my mug shot.

Small miracles fill ‘Chicken Soup’ edition
Local resident recounts a personal blessing for recent installment

By Jessica Benes
Loveland Reporter-Herald

Two nights after her daughter’s memorable first birthday party in 2007, Loveland resident Heather Schichtel sat down to write a story.
The story talked about her daughter Samantha’s seizure-free birthday, how the child had awakened without a problem, her blue-and-yellow daisy dress and her blessing bowl.

On Schichtel’s request, her family had brought things that meant something special, to be put into a special bowl for Samantha.

This day marked the last of a long year of infections, seizures, hospital visits and two emergency trips on a medical helicopter.

The short article, called “Blessing Bowl” recently was published in the book “Chicken Soup for the Soul: Count Your Blessings” that was published in November.

Schichtel’s daughter, Samantha, has a mitochondrial deficiency at the cellular level. The disease affects multiple systems, but Schichtel said the exact disease remains undiagnosed. Doctors don’t know which gene is mutated.

Samantha, now 3 1/2, has seizures and doesn’t walk or talk.

She takes medicine and is on a ketogenic diet for the seizures. The fat in the diet controls the seizures, Schichtel said. She’s fed through a tube in her stomach.

The medicine and diet, however, don’t help with her development. Samantha is at the stage of a 4- to 6-month-old child. She does develop, but very slowly. “With us, it’s about the tiny developments we see,” Schichtel said. “She smiled today, she made eye contact with her dad, she had a seizure-free day.”

It’s hard to find a support group for a disease like this, she said. She can’t just go to a Down syndrome or autism group.

She and her husband, Bart, a Longmont engineer, find support in their parents, and once she started to blog, she also discovered another resource — other parents in Colorado like her who have children with mitochondrial deficiencies.

Someone in the group is always at The Children’s Hospital in Denver for one reason or another, and the other parents have made it a habit to bring meals and call.

“We would never have met if it weren’t for this,” Schichtel said. When she visited a friend at The Children’s Hospital, a third friend brought sandwiches. Schichtel offered to pay, and the friend said, “No, next time we’re here, you can bring us something.”

“We’re constantly paying it forward,” Schichtel said.

She finds that writing is an outlet and a good way to relay her perspective on life to the rest of the world. About “Blessing Bowl,” she said, “It was really easy to write. I felt really passionate about it. You know when you have a really good night and you think, wow? Not to be cliche, but I felt blessed.”

Schichtel belongs to a writers group in Loveland. She also writes a blog, which she started during Samantha’s first year of life.

After she’d posted the blessing bowl story to the blog and received a good response, a friend forwarded her an e-mail from Chicken Soup for the Soul, seeking submissions.

She sent the story in, and it was accepted for the November publication.

“With all of this, it’s easy to look at everything and say, ‘well, crap.’ But we try to find each little piece of good and look at that. This has made us more gracious people,” she said.

She has another story that will be published in April in an edition of Chicken Soup for the Soul titled “Thanks Dad.”

Schichtel and a friend are starting an epilepsy support group in Loveland, sponsored through Epilepsy, Colorado. They will start meeting at 7 p.m. Tuesday at Mandolin Cafe, 210 E. Fourth St. They will meet the second Tuesday of the month and are open to parents who have children with epilepsy and adults who have it. For details, e-mail Heather at Heather.Schichtel@gmail.com. Also, visit her blog at http://www.SamsMom-Heathers.blogspot.com.

***if you missed yesterday’s post, read that first

I have nothing against the minivan…really…I drive a Chevy Malibu station wagon..I’m not going for sexy. I know we have come a long way since the days of the 1970’s panel van. In fact a minivan with seat warmers, big cup holders, a 6 CD changer and a nice DVD doesn’t sound too bad….

Minivan…just getting used to the word.

Minivan…say it slowly…it sounds kind of nice…. miniminiminivaaaaaannnnnn…

A good friend read my blog today and had a very important question.

“Heather, I have two inquisitive kiddos (and another one on the way) I can totally see us being the other mom in this situation and the two of them arguing over the baby in the stroller. Ideally, what would you want the other mom to do, or to say?”

“I have no idea.”

She laughed “Well that’s not very helpful.”

“The kids didn’t bother me, they weren’t being hurtful. It just triggered something in me…a thought about how Samantha is percieved. It did bother me that the mom seemed to ignore the situation. Kids are curious, I get that but I think the parent should have been a little more aware.”

“No standard perfect statement?”

“I wish. Because it depends on me too. Sometimes I’m up for a teaching moment about Samantha. Sometimes I just can’t be bothered. I’m a complex creature.”

We didn’t come away with any resolution but I really appreciated the question. It reminded me that most of us are just trying to do what’s right…or at least get through the day without annoying too many fellow neighbors.

Sometimes that’s a mighty tall order.

Minivan.

I was at a craft store on Saturday with Samantha. I have signed up for my second sewing class because I refused to be so intimidated by an appliance.

I am very intimidated by my sewing machine.

I had Samantha bundled up in her BOB stroller, the canopy was over her head so all you could see was her cute little feet.

Two little girls behind me are arguing…..”Look at the baby.”

“That’s not a baby, she’s too big to be a baby.”

“Well then why is she in a stroller?”

“I don’t know. Mom? Why is the little girl in a stroller?” (Mom ignores the question)

“She’s not a little girl, she’s a baby!”

“Is not.”

“Is too.”

“Mooooommmmmm, ask that Lady if her baby is a baby or not.”

Oh good Lord. All this just to learn how to run my Singer. I really don’t think it’s worth it. I look back at the mom and give her my Really??? look.

She doesn’t seem to notice because she was on the phone. So I did my best to ignore them all. Other times I might turn and explain to the kids that Samantha is in her stroller because she can’t walk, etc, etc. But some days I just don’t want to explain our situation. Today was one of those days.

I have slowly been coming to terms that we need to get certain things for Samantha as she becomes older. We now have nursing care two days a week, we are looking into moving into a house where Samantha’s room can be on the first floor…

All because she is getting bigger.

And I am looking into a wheelchair. We have a ‘seating system’ for Samantha at school so she can sit with her peers. I keep it at school because it’s big, bulky and just doesn’t work for quick trips into the craft store.

I love our BOB. It folds up, it’s light. I can plop Samantha in there and she can wiggle until her hearts content. AND it has a weight limit of 60 pounds!!!

I probably couldn’t justify putting a 60 pound Samantha in the BOB. She’s 30 pounds now and it seems to strike a debate at the craft store.

After our stroller encounter, I met a group of friends at a 6-year olds’ birthday party.

“We need to get Samantha a wheelchair.” I said

“Oooohhhhh, I’m sorry, ” said a friend. She then frowned and caught herself. “Why did I just react like that?”

I laughed at her honesty. “Probably because I feel the same way.”

Not that it’s bad. Not that we don’t need it; we do. But that our life is moving into another space. A space that is a little more complicated. A space that means I can’t plan appointments too close to each other because I will need a little more time…time to load and unload a bigger Samantha. Who is, by the way, not a baby

It means we might have to buy a minivan. It means I will become a mom, minivan driver.

Crap.

So, the wheels are in motion. We have contacted our durable medical equipment company for a wheelchair for Samantha. It should take about six months for approval and delivery.

By then I’ll probably have my head wrapped around the idea.

Mama was about to post her relief that the tree was put away, ribbons were picked up and stockings packed for another season. But no Mama! You can’t close up the season without posting my Christams extravaganza!

Tell me again about this Christmas thing….

Santa?

Presents?

I guess presents are okay…

Elmo from Santa is my favorite

The family showed up Christmas Eve

And all heck broke loose!

Pops and Uncle Ryan

Aunt Jen

Pops and Nonnie and their book…

Santa surprised Mama Christmas morning with a bike!

Sadly, my photographer forgot to snap some Christmas Day photos (he gets distracted!) Christmas Day was lovely with Grandma Judi and Grandpa Jim. Here they are at one of my first Christmas activities…the Nutcracker!

A week later Mama said I had to put my dancin’ shoes on once again. Here’s New Year’s Eve….

A little ‘adult beverage’

In-depth conversation…

Time with the boys

Snogs for me

And for the puppy

Ended the year right where I wanted to be!

After a lovely evening with friends, Hubby, Samantha and I got home just in time to welcome the new year.

Hubby and I lit a candle and opened the front door to let out 2009 and bring in 2010.

“Goodbye 2009,” I said.

“It was a pretty good year,” said Hubby.

And we blew out the candle.

I love this man who can endure so many TCH stays and still consider it a good year. He is my silent muse and reminds me of what is important.

To health, to family, to friends and to finding the good.

Happy 2010

I just got around to reading Time Magazine’s article on the ’00 decade, or what Time Magazine calls; The Decade from Hell.

It made me a little upset.

These last ten years were hard; no doubt about that. I know people who have lost a home, lost a job, lost a friend or loved one in Iraq or Afghanistan, a friend in the sunanmi.

I will never forget walking into Grand Central Station four days after the towers went down and seeing signs of missing people…moms, dads, sons, daughters. I will never forget the smell of burning oil in the financial district.

I will never forget watching in horror as people waited in the Louisiana Superdome for help. Surely, this could not be happening in my country.

It’s been a tough ten years. But to condemn us to hell…an eternity of suffering inflicted by small demons seems a little harsh.

Because you know what? Ten years is a long time! If your lucky you get 8? 9? decades in your life? Good things and bad things will happen during this time.

You can take any decade and stack up the bad things….1940: Pearl Harbor, the Holocaust, a World War…it’s estimated 50-70 million people died in WWII…talk about hell.

1950: The Korean War, McCarthism, Nuclear Testing, The Cold War

1960: Cuban Missile Crisis, Kennedy assassinated, MLK assassinated, Vietnam, riots

1970: Vietnam, Kent State, Watergate, Nixon, Leisure suits are all the rave

Should I continue?

And it wasn’t bad everywhere….

People who live in China thought this was a great decade. A young Chinese couple on NPR were beside themselves because they could afford a T.V.

A T.V.

Perhaps we need to rethink our Decade from Hell. Perhaps we need to look back on what past generations went through, pull ourselves up by our boot straps and refuse to be mired in what is wrong, what is bad. Otherwise we’re just like the big crying baby on the cover of Time…sad, immobile, waiting for someone to come and fix it.

I think that’s selling us a little short.

I am still feeling a bit lazy and lounging in a post-Christmas stupor. So, I’m not posting anything new but in case you missed it, here’s our Christmas poem!

Two weeks before Christmas and I sat there feeling crummy,
Samantha had a cough and her nose was bit runny.
I had shopping to do. I had to clean our castle
I was all done with this holiday hassle!

I sat there feeling sorry for my cheerless self
When I noticed sitting beside me was a small green elf.
No bigger than a latte’ and with ears that were pointed,
He looked at me and said “Oh, Heather, I am so disappointed!”

“Disappointed?” Said I, “You? You have no right!
You’re up at the North Pole eating cookies all night!
You have no idea of my hardship and woe.
I’m sorry dear elf but you’ll just have to go.”

With that, the elf kicked me, hard, in the shin.
“Good, now that I have your attention, I shall begin!
I’ve tallied your days…the good and the dire
If your good days were dollars, I could retire!”

Then he pulled out a list and he stated to check,
I thought I would listen. I figured what the heck.
“Samantha has been healthy, that itself is a reason
to be grateful and thankful…not grumpy this season.”

“She started preschool and is learning quite a lot
Her buddies and teachers love her…give that a little thought
She is smiley and growing, getting stronger day by day,
Goodness, do I see that grimace fading away?”

“Bart works hard everyday at a job he finds keen
And many times this winter, on the slopes he could be seen
You took a family vacation, Yellowstone was the place
Aren’t those all wonderful, joyous reasons to embrace?”

“And for you my friend, this year has been quite alrighty
You’re writing, you’ve been published, those things are dynomity!
You skied all winter, in the Courage Classic you rode
I’m so happy for you all, I’m about to explode!”

“Well don’t do that! It gives me more to clean!
But I hear what you say and I get what you mean.
So thank you dear elf, you’ve renewed my holiday cheer…
Happy Holidays to all and a lovely New Year!”
Love, Heather, Bart and Samantha

I starting noticing them around Thanksgiving….

staring at the items in the aisle like they had never seen them before,

standing three carts deep next to the brown sugar and analyzing the difference between canned turkey gravy and dried turkey gravy.

The dazed and confused look in their eyes gave them away.

Holiday Zombies: a direct result from an overworked, stressed out induvidual. They will run over you for a dollar scarf at Old Navy. Don’t even think of fighting them for a Zhu Zhu pet at Toys R Us. You will loose…poorly.

Holiday Zombies have lost their minds; cognitive thinking and compassion is beyond them.

They are also very bad drivers.

On Wednesday I dropped Samantha off at preschool and then rushed off for two hours of uninterrupted Christmas shopping. Instead of being blissfully happy to have two hours to myself, I replayed a shopping list in my head, cursed traffic and felt my anxiety grow over my mounting Christmas duties.

I pulled into the mall and turned off the car engine but I still heard a low growl. I looked about…nothing…but the growl was getting louder….

And then I saw them. The Holiday Zombies…they were coming for me. I had been dazed enough, rushed enough, ‘crazed’ enough that they decided I would be a tasty member of their zombie club.

I locked the doors and started talking to myself (which by the way, I do quite often)

Heather, what’s up?

I don’t know, it’s the season. I feel so busy. Their is always something else to do. I feel like I can’t catch up, no time for myself…

What’s the most important thing?

Samantha’s healthy.

Say it again

Samantha’s healthy

Louder

Samantha’s Healthy!!!!

LOUDER!!!!

SAAAAMMMMAAANNNNTTTTHHHHAAAA’SSSS HEEEEEAAAALLLLLTTTHHHYYYYY!!!

I can’t hear yyyyyooooouuuuuu!!!!

So there I sat; in the Malibu station wagon…yelling my fool head off.

That’s right, I said to myself, when you put it like that the rest is just gravy.

Dried Turkey gravy?

Oh no, Sugar. The real stuff

With my priorities back in line, the Zombies left, disgruntled and without another team member. I sighed deeply and felt my anxiety wash away.

I got out of the car with a smile on my face and new sense of humanity. I walked into the mall and rocked those Power Hours.

Rocked them like a hurricane.

The world is a funny, funny place.

And Friday was no exception.

Friday afternoon was spent at Children’s, thankfully, thankfully, without Samantha.

I had a parent board meeting….

which is always good…because I get to connect with other parents and I get to see one of my favorite people; Miss Tracy.

And then Miss Tracy and I went to go see one of our favorite families who sadly are on week eight in the hospital. And we all talked…

We talked about things that seem forbidden to other families;

We talked about life

We talked about death

We talked of these things with an odd sense of normalacy because all of us have been a family in crisis. That is one reason why we all bonded so quickly.

I talked about Jack. How I think of him everyday but not in a bad sense, just in a sense that he is with me, everyday. I feel this with such certainty. It’s normal to me and amazingly comforting. It’s like the air I breathe, the water I drink. He is just there.

I left the hospital with a solid foundation of peace.

That night I went to an ornament exchange party hosting by another of my favorite people…Sweet Sue. The ornament exchange has rules…you pick a number and as your number is called, you can steal an ornament from a fellow party goer that has already been unwrapped or select a new, unknown, wrapped ornament from under the tree.

I had number 13 of 18…not a bad number. The higher your number the more choices to steal! I watched as people unwrapped and decided I would only ‘steal’ an ornament if someone had a frog or an angel…

Frogs for Jack, angels for Samantha (see November 30th post).

As lovely as the ornaments were, no one had a frog or an angel. So I picked a completely random package from under the tree and unwrapped it.

And I unwrapped a frog,

and another frog,

and another frog….

Three frogs for our tree. And I started to cry in the middle of Sue’s ornament exchange! I cried because the day had been so special to me; emotional but so very heartfelt. I cried because I had been talking and thinking of Jack throughout the day and here he was in this random Christmas ornament; giving me more frogs to hang on the tree. I cried because out of all 18 packages under the tree, I picked the frogs…..

Because I was supposed to.

I cried because life sends you little packages when you need them the most.

The ornament exchange party-goers all cried with me and then decided it would be poor form to steal my colony of frogs 🙂

They’re good ladies.

To everyone who came out tonight,

Braved the cold,

held Samantha,

bought a book,

listened to our story,

Thank you.

Our cup runneth over.