Angels and Frogs

I remember being 3 and decorating a gingerbread man and gingerbread lady at preschool.

They had raisins for eyes.

And red-hots for buttons.

And FROSTING on their hands and feet.

They were looking mighty tasty. And I was just about to eat their tiny gingerbread heads when my mother said, "lets take them home and shellac them, then you can have your gingerbread people for a long, long time."

Shellac them????

"Can I still eat them after we shellac them?"

"Well, no."

Well that didn't sound very fun. What the heck is shellac anyway? I didn't care about Christmas next year....I wanted to eat my gingerbread people NOW.

But my smart mother bribed me with an Oreo or two.

And I'm very glad she did.

The gingerbread man hung on the tree for 25 more Christmases before he met a crumbly fate. The gingerbread lady is still going strong. She's looking a tad petrified but not bad for eggs, flour, sugar and (of course) shellac.

Every Christmas I wait to see if our little lady has held on another year.

I decorated our family tree this weekend. It's a treasure trove of new memories and how our little family has grown over the years....ornaments we received when we were engaged, married, Samantha's first Christmas.

And many, many frogs....

When we lost Jack, I decided that his 'token' animal was a frog...it was a boy thing. As a result we received many, many frog ornaments that Christmas. Frogs skiing, dancing, wearing prince outfits, roller skating or frogs just being frogs.

I love our frog ornaments.

Samantha seems to get angels.....wooden angels, crystal angels, ornate angels, simple angles, angels skiing, angels dancing.....

I love our angel ornaments.

Frogs and angels....frangels...an unlikely combination. Is our tree housing a dichotomy?

Hmmmmmmmm...

Frogs become princes, frogs have been called the 'angels of the rainforest'....the indication of a healthy planet....Kermit plays a mean banjo.

And angels are well....angels are good.

It's a good tree and I am content with our new memories.

I'm off to find some gingerbread.

The Perspective Elephant

It is Thanksgiving.

And I never posted what I am thankful for....

I hope that's okay and I hope you know all that we are thankful for....you who stop in and read what we are up to; provide support and well wishes. Thankful for seizure meds and the ketogenic diet. Thankful that we live during a time that can provide medical care for Samantha.

But this year I am especially thankful for a little perspective.

Three years ago, around Thanksgiving time it became clear to me that Samantha wasn't progressing the way a baby should. But I didn't talk about it. In fact no one really talked about it, not even Samantha's doctor....

"Place her on her tummy more often and up her calories in the formula." Doctor's advice...

Oh well she's fine...just needs a little more tummy time....that's what the doctor said.

So the holiday season was spent placing Samantha on her tummy as much as possible and trying to convince myself that everything was fine. I never really talked about how scared I was....scared that Samantha wasn't 'right' scared that something could be wrong with my child. Terrified that our lives would be different from what we expected.

It was the big, stinky elephant in the room.

No one talked about the elephant.

Elephant's take up a lot of space....it takes a lot of energy to not acknowledge the elephant.

It was a crappy way to spend the holidays.

This year I am grateful for the fact that we know our lives are different and we don't pretend otherwise. I am grateful that we don't have to relive that first, uncertain year.

The silent elephant moved out as soon as we acknowledged that she was indeed in the room and there was indeed an issue...something about moving onto another family who needed a big, obvious, pachyderm

This was good because elephants eat a lot.

Happy Thanksgiving

Find those Moments!

In the spirit of Thanksgiving....

that and I am baking at 11:30 at night....

I am thinking about my life and what makes me happy....

One of the 'perks' of being a special needs mom is that you meet other special needs moms. I swear, if I'm ever caught on the Golden Gate bridge, in the middle of an alien attack in a snow storm, don't call Superman or Spiderman, call one of these moms; they are truly amazing. I live off of their strength like one of those crazy creatures in Aliens.

If you need a source of inspiration this weekend, take a tip from my friend Maria. She wrote this week two in the ICU....

MOMENTS OF JOY

I read somewhere that happy people focus on moments of joy rather than overall happiness. I am sure many people dread the life we live. A sick young child with a life threatening progressive disorder without a cure in sight, how much worse can it be? I sometimes see it for a split second in people's eyes, but I hope they never see it staring back at them. The simple reason is that we feel happy in the middle of all our stress and uncertainty. We have completely moved away from finding complete happiness in all parts of our lives. The focus is on moments of joy, and they sure are there for us.

Wow

So on Thursday.....

If the turkey is dry....

And the mashed potatoes are runny.....

And crazy Uncle Charlie just pinched your ass because he's had too much to drink....

And you found a cat hair in Aunt Nancy's jello mold.....

Take a deep breath and find your moment of joy....

You might have to dig deep but you can find it.

Books!

I'm starting to realize my book button is a little confusing :)

If you would like to buy a book and have it signed, click on the 'Buy Now' button to the left underneath the Blessing Bowl pic; This will send me an email and I can send you a book!

If you are in the Denver-NoCO area, just shoot me an email and we can coordinate a time to meet up. Perhaps over coffee? :)

If you are in the Loveland, Fort Collins area, come to the book signing party! (Send me a note if you're interested and I'll send you the details).

Chicken Soup books make GREAT Christmas presents!

Highlights from the book signing party!

We have a talented group here at Team Samantha. It's a good thing too cause Samantha's mama needs a lot of help! Here are the highlights from the party....thanks to Dad for taking the video, Cynde for producing, Tracy for taking pictures, Mom for being the accountant, Hubbie for his support and lovin' his girls.

But I Don't WANT to be the Grownup!!!

About a month ago my friend Tammy got tickets to the midnight showing of New Moon. Now, I'm not the Twilight fan Tammy is. Come to think of it, I don't KNOW a bigger Twilight fan than Tammy but I knew it would be a fun night and I hate to turn down an evening with the girls.

Midnight showing? Home at 3:30 in the morning? Heck yeah!

This week has been kind of tough for Samantha. We found out she has a UTI. We didn't get her on the right antibiotics until four days into the infection. As the week has progressed, Samantha has become more and more uncomfortable.

Today she didn't look so good. She was lethargic and so congested she was really working hard to breathe. So, we headed down to Children's.

At 4:00 I called my friend Tammy and sacrifice my ticket to the New Moon gods. Damm...

At 4:30 we are sent home. The chest x-ray was clear. Her white cell count was normal and she was not running a temperature. But do to her lethargy and congestion, it's assumed she has a virus.

UTI and a virus on top of that. Poor peanut.

But we're going home! And I'm half tempted to call Tammy and tell her I'm back in.

But then I realize that Samantha needs to be watched, she needs to be suctioned and perhaps needs a couple additional meds tonight to keep her comfortable. Yes, hubby can do all that but the last thing I would want would be to return home, at 3:30 in the morning to a sick, distressed child that needs to be taken back down to Children's.

And in her state, she needs a mommy on her 'A' game.

Shooba.

So I forgo New Moon and my jumbo box full of JuJu Beans. Perhaps it's for the best, I was going with a bunch of ladies who are clearly for Team Edward and I'm a Team Jacob girl. That's right ladies....lovin' me some wolfman.

National Epilepsy Month

I would say "Happy National Epilepsy Month" but there is nothing happy about epilepsy. Epilepsy is a nasty, scary, misunderstood disease.

According to the epilepsy foundation, A seizure happens when the electrical system of the brain malfunctions....

Unfortunately, the brain is the most studied yet most puzzling part of the human body.

Perhaps that is why we still can't figure out a cure to this debiliatating electrical malfunction of the brain. Many siezure drugs were discovered by accident; they were used as steroids, migrane medications or to control high blood pressure but somehow it was discovered that maybe they might work for epilepsy.

But it's still not really known why they work. Not even the doctors....and trust me, there is nothing scarier than talking to a world-reknown epileptologist and having them shake their head and say "I'm just not sure what to do next."



In honor of National Epilepsy Month, Samantha and I have lit a candle. We have lit it especially for our little friend Jacob who is still in the ICU at Children's fighting seizures. We have lit it in hopes that even though his doctors are baffled and don't know what to do next that they will keep searching for answers and a cure for our friend. We have lit it for his parents who have had to be strong for so long and want nothing more than to see their little boy look at them and smile.

We have lit it because we're not quite sure what else to do to help. So when you go to bed tonight and think a little thought for Samantha, think a little thought for her friend Jacob too. Because we have to keep fighting for a cure. We just can't give up on what we don't understand.

Just Being 3

Samantha was fussy this evening and nothing seemed to work.

I held her...and that didn't help. I thought maybe she just needed to squirm around on the floor. Nope

Lay on your belly? Heck no.

I became worried. Is something wrong? I took her temperature; normal. I cath'd her; which came out fine. I suctioned out her nose; which really made her mad!

Hubby's out of town so I bounced around ideas with myself...what am I missing?

Finally it was Samantha's bedtime. I laid her in bed, tucked her in and kissed her goodnight.

And she stopped crying.

Aaaahhhhh.....tired and cranky! Could that be it? A typical three year old problem? Funny how I can diagnose a UTI in minutes but it takes me an evening to figure out tired and cranky.

Enjoying a typical 3 year old moment.

Love

If you could harness love as an alternative form of energy....

You could have lit up the city of Denver, maybe even Manhattan, the pyramids, the taj mahal.....

Based on the amount of love generated from the book signing yesterday.

And that's pretty cool.

People braved the snow and the cold in order to hear the Blessing Bowl, buy a book and support the Schichtel family. The circle of friends was amazing; people I knew in elementary school, people I knew in college, family friends and people I'm just starting to know.

Everyone talked, mingled and even shed a tear or two. Samantha's mommy was a bit of a mess herself and could barely get through the story.

Once again, I am overwhelmed by our community and the people who support us. What moved me the most is that our little girl was held, loved and doted on the entire time....and it wasn't by her parents! Samantha's teacher rescued her from her stroller, Miss Christy took Samantha duty and even Uncle Ryan took a shift. I would look up from a book and think where is my daughter? only to find her cuddled in the arms of another loving member of Team Samantha. I am amazed and grateful for the lives she continues to touch, the people who have come into our lives because of our precious girl and the outpouring of love.

Seriously, we should harness this love stuff....pretty darn powerful.

My only regret is that I didn't have time to talk to each of you. Let's do lunch.

Once again, thank you, thank you, thank you :)

Can I Hold You Tight Enough?

Sometimes after a tough week....

When our precious, fragile community seems to be on it's knees...

When kiddos we know and love have been hospitalized, poked, prodded and even induced into a coma so that their poor brain can stop seizing...

I place Samantha on my lap,

And smell her sweet breath,

And kiss her nose,

And feel her eyelashes blink against my cheek,

And think that I cannot possibly hold her closer or adore her more.

The little things.....

Today at school Samantha's teacher asked everyone to pick a partner to go outside.

Samantha was sitting in her chair when one of the new little boys came up to her on his own, touched her shoulder and said, "Samantha will you be my partner?"

He approached her left side which is a tough side for Sammers but she purposely turned her head and looked right at him.

Samantha and her new friend went outside together.

Thanks new friend.

Sunny Days, Sweepin' the Clouds Away...by Samantha

Mama is old!

But not as old as Sesame Street!

Sesame Street is so old today that Mama says she watched it as a little girl.

I asked her how she could find time to watch it when she was running from the dinosaurs!

That's because I think she's so old.

One of Mama's favorite birthday's was sharing a Cookie Monster cake with her Grandma Dodie. They smeared blue, cookie monster frosting on their teeth.



Probably to distract the dinosaurs.

Since Mama was a little girl, Sesame Street has grown to be broadcast in 140 countries. AND it was one of the first shows to talk about and feature kiddos in wheelchairs, with hearing impairments or other disabilities. That's right, Big Bird's focus has been on tolerance, empathy, inclusion and what us kiddos can do to make the world a better place.

Perhaps grown ups should be watching Sesame Street with me?

Just sayin'

HAPPY BIRTHDAY SESAME STREET!!!!

20 Years

Like any good Generation X’er growing up in the 80’s, I was a child of the Cold War and the culture associated with it. Who could forget that terrifying movie The Day After with the sobering nuclear attack scene? I can still recite Sting’s I Hope the Russians Love Their Children Too.

How can I save my little boy from Oppenheimer’s deadly toy?

Good Lord.

Mr. Gorbachev, open this gate. Mr Gorbachev, tear down this wall!

Still brings tears to my eyes.

I remember sitting in front of my grandparents Curtis Mathis crying as I watched the wall come down. I was 18; going to college in Boulder. I sat in my tie-dyed, patchouli scented t-shirt, young and idealistic and cried.

“This is the greatest event of my life.” I said (I was young!)

My grandfather shook his head. “There is nothing more dangerous than a unified Germany,” he said. “It will be world war three; mark my words.”

I couldn’t believe his words. We just prevented world war three! It’s over! It’s done! No bombs were dropped, no blood was shed.

Twenty years later I can understand his perspective. I don’t agree with it but I understand it. He grew up in the wake of WWI and lived through WWII. His idea of a dangerous world was (and still is) much different than mine.

Twenty years later and a day before Veteran’s Day….what does it mean; a world without this wall? It has been a tough week here in the States; shootings in Fort Hood and Orlando. Many people would argue that they don’t feel any safer in a post Cold War world. Many Eastern Europeans would argue that they preferred life under communist rule.

But you know what the big difference is?

People can talk about it.

People can meet about it.

People can even rally against it.

Last month thousands of Romanian workers rallied against pay cuts and no one was arrested. No one was taken away. It was a different country 21 years ago.

As our own country changes, we meet, we argue, we discuss and if we yell loud enough, we are heard. Town hall meetings are democracy at work, dialogue, discussion, disagreement.

We need to remember this wall….celebrate the meaning behind it; the freedom of a choice, to meet and to have a voice. More importantly, to remember a time when our friends and family did not have these freedoms. Personally, I have pulled out my tie-dyed, patchouli scented shirt...that's right...feeling a little idealistic.

Happy Berlin Wall anniversary and Happy Veteran’s Day.

Hazardous Material

Sometimes I forget that our life is a little different than others....

We have had 100 vials of Vancomyacin in our downstairs refrigerator next to the pickles. This was medication left over from the summer...from Samantha's battles with several different infections. The vicious infection cycle kind of went like this....

Samantha would get sick.....

We would go to the hospital...

The hospital would place a PIC line....

We would go home on I.V. meds....home health care would deliver two weeks of I.V. medications which was stored in the downstairs refrigerator, next to the pickles.

Three days later, Samantha would get sick again and we would be back in the hospital.

This resulted in copious quantities of Vancomyacin in our refrigerator....really, 100 vials....no exaggeration

What does one do with 100 vials of Vancomyacin?

I kept it in the frig for a while; hoping I could think of some wonderful charity to donate it to. Unfortunately, many of the vials expired in July.

And no one takes expired meds. You could be in the deepest, darkest Africa, with a raging infection, in need of Vancomyacin....but if it's October 2009 and the vial expired in July 2009....sorry, no luck....All meds are checked at the border and they are expired, they're thrown away.

This kind of bugs me. If I had a raging infection in the middle of no where I would take whatever they gave me but that's a whole different blog.

I digress....

So, last week in the middle of the snowstorm I decided it was time to take back our refrigerator and throw out the 100 vials of expired Vancomyacin sitting next to the pickles.

And I learned something new......

I discovered that 100 vials of Vancomyacin cannot be thrown out with the milk cartons and boxes of Rice Krispies. Antibiotics are considered hazardous material and handled as such.

I found this information kinda funny seeing that the Vanco has been sitting next to the pickles for the last five months.

So I loaded up our three bags of Vanco in the back of the station wagon and headed down to the Larimer County dump. I found the hazardous material office due to the skull and crossbones on the sign.

Lovely.

I pull out the bags and head into the office.

"Whoa! Whoa! What is that?" The hazardous material guy says.

"It's I.V. antibiotics. It's expired. I was told to take it here."

HazMat guy pulls out these big, thick rubber gloves and gently holds a vial of vanco. "Any needles in here?"

"No"

"Anymore of this?"

Well I certainly hope not "Not at the moment." I say

"Why you got this?"

"My daughter was sick. She needed this medication but she doesn't anymore."

"Good." And with that, HazMat guy pulls out a big heavy plastic bag and delicately puts the vials of vanco in the bags using his big, thick, heavy rubber gloves.

It's not going to explode. I think, it's been next to the pickles

I make a mental note that perhaps I should throw the pickles away.

Chicken Soup! By Samantha

I'm writing today's blog because Mama only has one typing hand. The other hand is giving herself a pat on the back....

A couple months ago Chicken Soup for the Soul accepted her essay, The Blessing Bowl, to be printed in their book, Count Your Blessings! Today, the book was distributed. We are very excited to see Mama's work printed in a book! This is also Mama's first paid writing gig...which is exciting too!



Here's Mama in the bookstore with her Chicken Soup book!


I think it's a nice cover!


And the essay!

The Blessing Bowl is the story of my 1st birthday. It's a story of sharing, love, family, gratitude and changed expectations. I'm quite fond of it...especially since it's about me :)

Mama also has books! If you are looking for a Christmas gift, shoot her an email and she'll send you a book....heck, I'll even sign it :)

The List

We have been waiting for the H1N1 vaccine. It's never really been a choice for us, do we vaccinate? Do we not? It's always been understood that if Samantha got H1N1, she would probably get really, really sick.

Hospital sick.

We are not fans of the hospital, even though we seem to spend a lot of time there.

So we vaccinate.

I have been calling to Children's weekly to see if the shot is available. I called on Thursday last week to be told we were close...call on Monday....

So I called today and spoke to a nurse who was filling in for our regular nurse. The filling-in-nurse-situation is always slightly problematic. I admit I am spoiled....I usually call and talk to our regular nurse who knows us like the back of her hand...she knows Samantha...she knows when I have a certain tone of voice that something is really wrong...she just knows.

The filling-in-nurse doesn't know....

"I'm calling about the H1N1 vaccine." I say "Samantha should be on the list."

"Oh, well we only got 100 doses and they have already been allocated."

"We were told we would be one of the first to get the shot."

"Can you hold? Let me check with the clinic."

While on hold I told myself that maybe it was a good thing that Samantha wasn't on the first 100 list. Perhaps she can wait. Perhaps their were kiddos sicker than her, kids with trachs, kids who were just, well sicker. I had done a pretty good job of convincing myself that another month of Tamiflu wasn't so bad when the filling-in-nurse came back.

"Mrs. Schichtel? I'm sorry. I was wrong. Samantha is on the top 100 list to get the vaccine. You can come in this week. Let me transfer you to the scheduler."

I felt a lump in my throat. So you're not happy if you're on this list? Not happy if you are?

Yeah, that's kind of how it works. So relieved to get it...wishing we didn't have to. Happy to be on the list in order to get the shot....wishing we weren't on the list. The top 100 high-risk kids at Children's is not a slot you hold your breath for.

In summary, Samantha will get her coveted shot on Thursday and her mama will breathe a little easier. I guess if you have to be waiting, it's okay to be on the list.

Halloween! By Our Pumpkin

So I'm just sittin' here.....chillin....



and Mama turns me into a pumpkin!



A very cute pumpkin no less....



Daddy making a squash face....smile pretty Daddy.





Hanging out after trick or treat (Mama ate all my Reese's)



Whew! Being a pumpkin is hard...trick or treating is a lot of work...downtime with Daddy is a must.