Home is a name, a word, it is a strong one; stronger than magician ever spoke, or spirit ever answered to, in the strongest conjuration.
Charles Dickens

Our first weekend at home since Father’s Day.

Father’s Day was June 14th.

It’s now August 9th.

That’s a lot of weekends.

We miss life’s everyday simple gifts when in the hospital. My basic senses are deprived in such a sterile, complex environment.

I don’t smell our neighbor’s lilac bush carried on an evening summer breeze.

I don’t collect dirt underneath my fingertips when weeding my tomato bed.

I don’t taste a sweet strawberry plucked fresh from our garden…still warm from the sun.

I don’t become completely absorbed in Samantha’s face as she lays in the grass and wiggles her feet.

So this weekend I did all of these things. I also pee’d with the door open because I didn’t have to worry about a doctor, a nurse, housekeeping, or the volunteer from the library walking in. Home is a good place.

And it is even BETTER with the healing of Samantha! For the first time in months…really since April, we have a smiley, cuddly, interactive little girl. She looks so good. She feels good. She wiggles around. I can’t get enough of it. I feel drunk on her good health.

So send your prayers, your good thoughts, your juju, your divine connection with the universe, and your lucky rabbits foot that we have turned a corner and smiley Samantha is back and out of the hospital. ‘Cause really? There is nothing better.

I wake up and look at the clock….8:00 Friday morning; t-minus 24 until I have to be at the start in Leadville.

Not a problem….I’ve trained. I can pack in a day, get the family ready. Food and cold beer have already been purchased. We are good to go.

Oh wait, one small detail….we still happen to be on the 8th floor at Children’s Hospital.

I start to formulate back-up plans. Can I ride in morning and drive down to Children’s in the afternoon? How many days can my husband stay in the hospital without going batty?

I was smokin’ crack, thinking that I could pull this off, thinking that I could make this ride happen.

Crap.

Our fabulous pediatrician, Dr. E. comes into the room.

“What are your plans?” She asks

“I don’t know….what are our plans?”

“Will she be on oxygen the whole time?”

“We will never take her off of it.”

“You have all of her meds?” She asks

“Of course.”

“Here is my cell phone number. Call me if you have any problems. Otherwise, I think we can get you out of here today and you can go up.”

My eyes fill with tears. “Thank you.” I say

She hugs me “Go, ride, be careful, take good care of her and for God’s sake, don’t get hurt.”

It’s 5:30 in the evening. Samantha and I are packed up, out the door of Children’s and hopelessly stuck in rush hour traffic. We decide to leave tomorrow morning….but we are still leaving….pending Samantha’s night.

5:30 am, Saturday morning, we are on the road. Samantha is snoozing in the back. I am wondering how much coffee it will take to get me over Vail Pass. Six weeks in the hospital, God I’m tired.

We have made it.

It’s 8:30 am, Samantha is crying in the back. My husband is putting my bike together and I am trying to organize the meds and formula he will need for the day. I feel the adrenaline coursing through my veins, anxiety from the last month of hospitalizations and realize that perhaps the only thing that will calm me down is a 157 mile bike ride.

Good thing were here.

I see my team. I love my team. I kiss them all and feel a lump rising in the back of my throat. My step-dad pins a sign stating “My ride is dedicated to Samantha”, on my back. We are off.

I ride. I ride up Tennessee Pass, to Camp Hale, breathe in the pine and fresh air. I laugh, eat oranges and hold my team mates hand. As we enter the magnificent Pando valley, I am reminded of how very small I am and that maybe that’s okay. I get tired of trying to be so big. Through the valley I see members of Team Courage, riding tandem or solo. I cheer them on….so very grateful that they give me hope…hope that maybe someday Samantha can see Pando Valley from the back of a bicycle.

We stop for lunch. My team mate looks for her husband so she can breast-feed her baby. Have I mentioned how much I love my team?

And those are our three days…..we ride, curse Vail Pass, eat, sleep, wake up and ride again. Samantha is a trooper; no fevers, no pain and she sleeps off the last five weeks in the hospital. My husband and my mom watch over her like hawks, fielding calls from doctors and making sure she’s okay. This has become quite a production.

Monday is our last day. As we pack up, another team-mate pumps my tires and lubes my chain. I have become so dependent on other people this weekend. People to watch my daughter, fix my bike, look over us….have I mentioned how much I love my team?

This is the day when it all settles in for me. As I ride up Freemont Pass, I pass another member of Team Courage in a hand cycle; using her arm strength to carry her 45 miles and 2,000 feet of vertical. I look at my beefy, tired thighs. I couldn’t imagine my arms doing the climb I expect from my legs.

“Whoo Hoo! Go Team Courage!” I say.

“Thank you.” The girl replies in a breathy voice.

I get big tears in my eyes and my nose starts to run. Heather! Pull yourself together! You have to climb up Freemont Pass! There is no crying in biking! I wipe my snotty nose on the back of my glove and try to catch my breath. This is tough….because we are at 11,000 feet.
I pull myself together and manage to remain so around Turquoise Lake. As we turn onto 3rd Street, I realize that I did it….that we all did it….my team…because they love my daughter and they love me.

I try to hold back the tears as I turn into the Lake County High School. I hear the cow bells and a distant cheer of ‘Go Heather’! I see my husband taking pictures.

I ride up the hill sobbing…..one of those ugly cries…you know where you no longer have control of your facial expressions? Full body crying….pretty…..I can’t even thank the lovely girl in the wheel chair handing me my medal….no…..sorry little girl…I’m so overwhelmed, you’re so inspiring, and part of the reason why I’m crying.

I see some unknown person take a picture of me….yeah, that’s right, take a photo of the lady doing the ugly cry….nice

My team surrounds me in big, comforting bear hugs. We did it. Six weeks in the hospital, three courses of I.V. antibiotics, sleepless nights, a sick little girl, and 157 miles around the mountains. I am eternally grateful; to my husband, my parents, my friends, our doctors and our nurses….maybe it does take a metropolis…and maybe that’s okay.

Samantha’s Nonnie put together birthday highlights:

Well, it wasn’t a bbq in the backyard but we still managed to have a good time….

Birthday Wish…..

Miss. Colorado came to visit…..Samantha not so sure about any of this

Autographs for everyone….

Especially Great-Grandpa!

This is an understatement!

Tired big 3 year old.

Not an ideal location but a decent celebration. Happy Birthday Sweet Girl!

Just when I want to get all pissy and sullen that we are in TCH on Lil’ Misses birthday….I get this sent to me from her Uncle Ryan, Aunt Jen and Honorary Uncle Joe. Happy Birthday wishes from the sites in Turkey!

HAPPY

BIRTHDAY

S….

A….

M….

Wonderful!!! Thank you 🙂

Which got crazy Mama thinking….this is very last minute but if you have a second and want to send a birthday-wish photo to Samantha, send it to heather.schichtel@gmail.com and I will post your wish!

Uncle Ryan also sent Mommy a lovely new photo of herself

CHOMP!

Happy Birthday beautiful girl.

I am waging a war against these little bugs that keep infesting Baby Girl.

And oh yes, it’s very personal…

MRSA, Gram Positive Cocci, E-Coli…they are all on my hit list. At first I was somewhat casual about it. Bladder infection? Ten days of ammoxicillian? Well of course that should do the trick.

But now, after twenty days of infection and three return trips to the hospital, there is no more Nice Mommy.

It seems the infection has colonized…. Say the docs.

Colonized….I imagine little tribes of bacteria, hiding out in my daughter’s bladder, running and hiding when a big dose of ammox comes around and then resurfacing a day or two later.

“Whew! That was a close on wasn’t it Streptococcus?”

“Yeah, I think they got e-coli but we managed to escape.”

“Lets go find pseudomonas.”

Damm bugs.

So this last time we pulled out the big dogs. Two different kinds of I.V. antibiotics….vancomycin and clyndamycin…the nuclear warheads of antibiotics.

I love the smell of napalm in the morning.

And….Samantha is doing better. It seemed one more med made a difference. Her eyes are clearer, her color is better, she is sleeping better. Her blood and urine cultures are clean.

Thank God….

We also have her on a whooping dose of probiotics to try and bring back the GOOD bacteria.

The only problem is that a good General strategizes around the clock. Bacteria never sleep! We must be vigilent! Therefore, Samantha has been on a six hour med schedule.

We can do every six hours, can’t we?

Well, her meds take an hour and a half to deliver through her PIC line, which leaves four and half hours to sleep until the next dose is due, which means Mama has been a tired, cranky, General.

Today we had good news….it seems that the enemy is retreating. Today the PIC line was pulled and we are on an eight hour oral med schedule.

Eight hours is good.

Samantha is sleeping.

The General is going to bed.

There are days….

days when I’m rushing my daughter back to the hospital….

after having been out for less than 48 hours….

that I would like to morph into a Praying Mantis. You know, those neat looking green bugs that bite the heads off of other Praying Mantis’?

Chomp, Chomp, Chomp……

I’m not quite sure who would get it first. Would it be the driver in the left lane going 50 in a 75? Would it be the receptionist that can’t find our name on the schedule? Would it be the doc that questions why we are back?

Chomp, chomp, chomp……

I would only like it to be a temporary biting-off-of-the-head; maybe the head could grow back, maybe it could only be a nibble.

Chomp, chomp, chomp….

But if I did morph into a Praying Mantis we would be missing 90% of our medical staff (yes, at some point in time I have wanted to bite the head off of pretty much everyone who works with us) and that would be sad. They wouldn’t be around to do the wonderful things they did during this last stay…..

Wonderful things like get a PIC line placed for Samantha in less than six hours or push really hard to get us out tomorrow or coordinate home health care the day before a holiday so that we can go home.

Even if I only nibbled or if their heads grew back they probably wouldn’t be very happy that I decided to go all ‘Praying Mantis’ on them in the first place. They probably wouldn’t be very inclined to do all those wonderful things for us.

Pity….I do look quite nice in that shade of green….

It’s a delicate balance….what is rational…what is irrational….what is done out of love….what is said out of fear….how to keep my Mantis at bay….

Perhaps our doctors start to notice when I turn a bit green; when my jaw starts to lock and my eyes get a little buggy. Perhaps they speed things up, tell the receptionist to stay on the down-low, send the word out that this Mom needs some fresh air or at the very least….chocolate.

Thank goodness…we need them all…full bodied.

Chomp, chomp, chomp 🙂

This week…..

We checked back into Children’s on Thursday. Samantha had been on antibiotics for an ear infection. She wasn’t getting any better; perhaps a little worse. It was time, once again, to camp out on the 8th floor.

I called my parents and they expressed how sorry they were that we were back in.

“It’s okay,” I said, “we’ll get some answers and we’ll get her healed up.” I sounded slightly nonchalant and a bit blase’ about being back in. Have I gotten to used to this? Am I giving up? Just accepting that this is part of our life?

I don’t feel blase’. As I strapped on my big-girl undies, I felt like I was doing what was best for Samantha. Everytime we are back in, we move forward on the radar. We get more answers about tests, we push a little further.

Don’t get me wrong. I hate being in the hospital. But I think one of our greatest accomplishments as a family is that we have figured out how to be in the hospital. Our life does not stop.

This weekend I went for two 25 mile bike rides. I reserved a sleep room and got eight hours of sleep while Bart took the night shift. Bart went for a run and had a beer with my dad. We got out, we laughed…we had a decent weekend.

Samantha was exercised as she felt better. She was read to and cuddled for hours by her daddy.

Perhaps this works because we have to make it work. As I was riding today, I felt the warm wind in my face, the sweet scent of fresh mowed grass and marveled at how comfortable I’m feeling on my bike. I felt soulful, peaceful and strong. This is our life after all and we have to keep on living.

Speaking of life and growth….Samantha is growing MRSA in her ears and bladder. Infectious Disease has ordered more tests to determine how well her white cells are working since she gets infected so often. Hopefully, this will give us some answers.

She is comfortable right now and looking a little snarky. I think she’s feeling better 🙂 We’re hoping to go home tomorrow. She knows she is adored, not only by us but by all of you who keep sending good thoughts and prayers.

Thank you 🙂

Princess Samantha gets many requests from her fans. This latest was a little hard to decipher…it was all the way from our friends in France! Fortunately, it was from one princess to another….princesses speak the same language.

Here was the message from Princess Abigail……

I WANT MORE PICCIES OF THE LITTLE PRINCESS !! I WANT MORE PICCIES OF THE LITTLE PRINCESS !! I WANT MORE PICCIES OF THE LITTLE PRINCESS !! I WANT MORE PICCIES OF THE LITTLE PRINCESS !! I WANT MORE PICCIES OF THE LITTLE PRINCESS !! I WANT MORE PICCIES OF THE LITTLE PRINCESS !! I WANT MORE PICCIES OF THE LITTLE PRINCESS !!

Quite subtle, don’t you think?

What’s a girl to do?

I’ve been busy….keeping my father in line!

It’s a tough job.

Grandma Lyn came to visit!

We had several long chats.

Mom felt it necessary to take me to the eye doctor.

She then whooped it up with friends at her 20th high school reunion!

I didn’t know people could be so old!!!

They keep me busy…what could possibly be next????

The Sammer Hammer of course!

Me, Pop and Daddy!

Crazy, crazy Mama.

Me, my Aunt Poling, my lovely cousins, and Grandma Lyn!

Love my Daddy.

The Sammer Hammer raised $2,200 for epilepsy research. What a team!

Snogs to our friends across the pond!

XO-
Princess S.