My Grandma Dodie had a birthday last week…..I think she turned 87. How awful am I that I can’t remember if Dodie is 86 or 87?

Bad Grandaughter.

Back in the day, my Dodie was fabulous. She taught me how to dance by standing on her feet in her kitchen. She and my Popa always had coca-cola in their refrigerator and you could never eat too many potato chips.

Thousands of lightening bugs lived in their backyard.

Thousands!

Popa and Dodie bought me velvet dresses and impractical boots with heels. My feet were cold for a whole winter and I slid through the cross-walk to school…but I had great boots. Even today when I want to add a little fabulous to my outfit, I pull out one of Dodie’s choker’s or handbags.

I visited Dodie today. I’m not quite sure she knew who I was but she was still fabulous. She watched me pull out a birthday card….she let me read it to her. I pulled out flowers…eh, flowers.

And then I pulled out a big heart shaped box of chocolate and set it on her lap. Her eyes got wide. Her little fingers started to pull at the celophane…..

“Dodie, do you want me to open this for you?”

“uh huh!”

She eagerly plucked a carmel, dipped in dark chocolate and popped it in her mouth. It didn’t matter who I was, we were now friends.

Mama always said…..life is like a box of chocolates

I was planning on posting about our wonderful weekend in Beaver Creek and the fact that mama can’t do the bumps the way she used to….

This will come soon but something else has occupied my left frontal lobe…it’s taking up too much space so I must purge. It’s a good purge.

We got home this afternoon. Samantha was cranky, bags needed to be unpacked, calls to nurses must be returned and appointments for the week had to be made.

Samantha was tired; reduced to screaming in the middle of the floor. Bart was getting ready for a trip and I was supposed to lead a discussion tonight on Including Samuel. Including Samuel is a documentary on inclusion in public schools. It is a wonderful, moving documentary but I wasn’t in the mood to be moved.

I thought about cancelling the discussion. Long underwear, ski boots and gloves covered our living room floor. Samantha needed some attention. I was tired from the weekend and overwhelmed by the week. I couldn’t give anymore of myself.

But I went….long underwear wasn’t going anywhere. Bart and Samantha finally cuddled on the floor. I had committed…I headed to the library.

Instead of a group of caregivers, teachers or therapists, our audience was a group of adults living in a community home, people who have lived through public school inclusion or in many cases, separation into special needs classes.

At the end of the movie, one girl put her hand to her heart and said “This was my life!”

It soon became clear that I was not here to teach the pros and cons of inclusion, I was here to learn; learn about living a different life, being separated in school, being included and spending too much time in a hospital. We talked about Samantha, eating through a tube and trying to change perceptions.

I took away much more than I could ever give.

The underwear is still in the living room.

***The showing of Including Samuel was sponsored by the Arc of Larimer County A second screening will be held at the Fort Collins Main Library on January 30th at 2:45 pm. Admission to both screenings is free.

Get Born Magazine is looking for ‘firsts’ for their Spring publication…..not sure if this will make the cut but this is my essay on when I first realized I needed to be a stay at home mom…..

Stay at Home Sentence:

We sat across from each other in the ICU. Our 6 month old was stable but knocked out on seizure meds; there was nothing else to do so we worked. I typed to the tune of her heart monitor, answered emails, closed deals, made sure my team had everything they needed.

It was January 30th. I had to close last minute sales in order to make commission for the month. My head was buried in my laptop. My husband’s head buried in his laptop….we worked….in the Intensive Care Unit at Children’s Hospital.

My husband looked up from his computer. “When are you going back to work?”

“I’m not.” I answered, finishing my email. I am not. I finally had the nerve to meet his eyes. He looked at me and nodded…agreed….I am not going back to work. His eyes went back to the screen. I paused and looked the ceiling, watching the words I just uttered dance across the lights.

What did I just commit to? The fact that Samantha was so sick and we were both answering work emails was ridiculous. Someone needed to bite the bullet. Someone needed to be at home with her. I knew that someone should be me.

I had always entertained the idea of being a stay-at-home-mom but once those words…I’m am not going back to work , vomited from my mouth I felt like I had lost myself. I had lost ten years of ladder climbing, schmoozing, selling, getting on the managerial fast track…I had just committed career suicide…identity suicide. Who am I if I am not working???

Truth was I didn’t even like my job. I wasn’t saving lives or changing the world. I worked in marketing….trying to convince people to buy things. My daughter was very, very sick and I was negotiating with clients who were trying to convince people to buy things…Important things….garden gnomes, aprons with cute sayings, fart machines…life changing items

But it was what I did. What do you do Heather? Well I work for a company that tries to get people to buy garden gnomes and fart machines. This is what I do. And even though I didn’t really like what I did, there were parts of my job that I loved.

When Samantha was four months old, I had to go on a business trip to New York. I coordinated her care with my mom and husband. I cried as I said goodbye. I felt guilty and called myself a bad mom…..

And then I got on the plane and took a four hour nap. I then took a taxi to the W Hotel in Manhattan, checked in, changed into my pajamas, ordered room service and watched four hours of back to back episodes of Sex and the City.

I woke up the next morning after having the best sleep since I was pregnant.

The next morning room service brought me an omelet, fresh orange juice and coffee. I ate, uninterrupted, still in my pajamas and watching the Today Show.

I took a twenty minute shower and doused myself in Aveda products. No baby shampoo in this shower. No baby to have to listen to while keeping the soap out of my eyes.

I called my husband and pretended to feel guilty about a 2 am feeding. This was difficult because the W Hotel in Manhattan does not recognize 2 am feedings or poopie diapers or projectile vomiting. They only recognize things of the fabulous and sexy sense.

I dressed in a black silk suit, kitten heals and marveled in the fact that my jacket showed no signs…what so ever….of baby vomit.

I was fabulous in the meeting; witty and charming. I closed the garden gnome deal. Our team celebrated at a restaurant off of 5th Avenue.

Two months later, I sat in two-day underwear in the ICU at Children’s, watching over my daughter. I was feeling very un-fabulous, sad, beaten down. I did not care about my garden gnomes.

But my clients love me, they need me.

But my daughter needed me more. I knew I was doing the right thing…perhaps the life saving thing. Samantha needed someone to scour the internet, bother the doctors, ask questions, write down answers and ask questions again.

But I couldn’t help but be sad about a decision that was not mine, a decision that came out of necessity. I missed my kitten heals.

And I became a somewhat bitter, stay-at-home mom.

I protested for a while. I wore only sweat suits and refused to shave my legs. I traded my United Airlines Visa card for a Grocery rewards card. I watched a lot of Oprah. I also focused on my daughter, her care and realized the job I was now doing was rewarding, life-changing and life-altering. I wrote, I advocated. I discovered the sweet, sweet world of the afternoon nap.

I emerged from my funk a couple months later. Perhaps there is life beyond the garden gnomes. My new feet no longer fit my fabulous kitten heals. They were traded for a pair of sensible Merrells. The silk suit still has a place in the closet…hoping for another Manhattan date with the W.

I sometimes forget when the working world has a national holiday….

I also sometimes hold full-length conversations with myself. Today I was remembering the national holiday and talking to myself….

9:00 this morning I remembered it was Martin Luther King Jr’s birthday. Quite a man. Do you know he was only 39 when he was assassinated?

I turned 39 on Saturday. I certainly don’t feel old. I always thought powerful, thoughtful people had to be older than I am….someone with a couple more years under their belt. I certainly don’t feel empowered enough to move mountains, people and ideas the way MLK did. Perhaps I need to get a move on.

So what is your dream? My little voice said this morning over a cup of Starbucks.

Oh, for Samantha to be happy and healthy

Phhhhffffff…she’s happy and healthy now. Really, if you could shoot for the moon, what would it be?

So I shot for the moon….We would be able identify the mutated gene, the one causing all of the problems. And doctors would fix that gene; either through stem cells or some other sort of therapy. And Samantha would be fine. She would walk. She would talk. That nasty mutation would be fixed. That, is my dream. I have a dream And I felt so idealistic for even voicing that thought.

And then my little voice said Many of those people on the steps of the Lincoln Memorial who heard Dr. King make that empowering speech in 1963 never thought a black man could be president only 46 years later. They never thought a country could change so much. That dream, like your dream, was beyond their comprehension.

This is why I enjoy my talks with my little voice.

And even though my dream is so very different from what was discussed on those steps in 1963, it is still a dream, a hope, it is about looking forward, change, about expecting more from people-kind. It is about not giving up and believing in what seems impossible and so very far away.

We cannot walk alone.

We cannot turn back. MLK 1963

Because we all have a dream.

Haiti has been on my mind. Haiti has probably been on your mind too. I have tried to put my feeling to words but sometimes things are just too awful to verbalize.

So I have said nothing.

But then Pat Robertson said something….putting words to my emotions.

In case you missed it, Pat said the Haitian earthquake was “God’s punishment for Haitian slaves’ ‘pact with the devil’ to win freedom from France.”

Instead of sorrow, I felt rage, disbelief, horror and embarrassment. The Christian Science monitor stated that his remarks “got the usual chuckles of disbelief among local intelligentsia about American culture.”

Boo, hiss, Pat.

I gathered my rotten eggs in retaliation. I came up with poopie-head names to call him. I started to throw my stones. And then my smart friend Renee posted this on Facebook; A Response to Pat Robertson’s Comments about Haiti. I read Don Miller’s forgiving, intelligent post and lowered my eggs.

When Samantha got sick, I used to comment that we must have done something in a past life to anger the Karma gods. . I would think, why us? Where was God in the ICU?

And then I discovered that God was not in the seizures or the sickness, not in the sadness. God was in what we discovered from our hard times; the people in our lives, the amazing doctors, the ability to tell our story, our fight for Samantha and others. God was in our ability to keep loving and be loved.

God is not in this earthquake; not in the overwhelming death and destruction. God is in the doctors who fly in for 20 hour triage missions. God is in the small miracles that we hear about day by day. God is in the outpouring of aid to this poor nation.

This is not my sermon. People who know me know that I am far, far from a Saint. This is my speech, for myself, to keep me from throwing rotten eggs at Pat.

I want to say I feel sorry for a man whose spirituality is embedded in guilt, blame, hell fire and brimstone but I can’t. His words are too damaging. Instead I will search for the good and compassion in people trying to help. We will make a donation to help the people in Haiti and I will put down my stinky eggs.

Too bad…I was hoping to clean out my refrigerator.

Some days are cream days. Some days are skim milk days.

The skim milk days can do the trick. They add something to the cereal but deep down inside you know you are really just having milky water. The skim milk days leave you wanting more, wondering if there is anything more. Skim milk days still leave me hungry.

And then there are the cream days…..ahhhhh…the cream days. The cream days are rich, they leave you feeling full and content, happy and satisfied even if nothing outstanding happened.

Today was a cream day. I had a great coffee date with a friend this morning while Samantha was at school. I then met my special needs supermoms for lunch. My interactions with the supermoms always leave me feeling content. I can joke about meds, suctioning techniques and appointments. I don’t get the ‘sad’ look. The sad look makes me feel like maybe I am missing some undeniable truth in my life…like maybe I should be sad too. The sad look gives me wrinkles. I don’t like wrinkles.

It’s the cream days that get me through the skim milk days. Perhaps I live off the excess fat. No it’s okay…I can cut back a little…yesterday was a cream day…

Wishing you all a cream day.

Tomorrow is our first meeting of the Larimer County Epilepsy Support Group! If you know someone in Northern Colorado who might benefit from a latte’ and a little support regarding epilepsy, send them our way. I have no idea if we will be helpful but we’ll be supportive……and perhaps entertaining. I’ll tell a joke or two.

Here are the details:

Tuesday, January 12th at 7:00 (moving forward the second Tuesday of the month)
Mandolin Cafe, 210 East 4th St. Loveland, CO

You can post any inquiries here or email me at heather.schichtel@gmail.com

AND, my lovely friend Jenny gave me a Lemonade Award for my blog!

Jenny writes The Fish Tank which if you haven’t visited, go now! Jenny has three little ones under four and manages to stay sane, much more organized than I am and gives wonderful answers to my many questions.

Thanks Jenny!

A lemonade award is for those bloggers who make ‘lemonade out of life’s lemons’….hmmm…somedays I think I’m looking for lemoncello….Also, part of getting a Lemonade Award is passing it on to ten other blog writers. So watch for your award!

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.