So, I’m having a day….I really am.

Samantha has been battling with a urinary tract infection and as a result I have to cath her a couple times a day to empty her bladder properly. The whole process- an infection that won’t go away, seizures, sticking a tube up my daughter’s ‘parts’ has hit me hard.

My bad days happen every once in a while…I have a pity party, take a hot bath and have a glass of wine, rally and then I’m back for more. So, I was having my pity party and then I got on the Epilepsy website and Samantha’s team page….and I started crying…and here’s why…..

Samantha has one of the biggest teams. People I have not even met are running/walking in her name. I feel so grateful that we have this support; that Samantha is surrounded by love and people who are cheering for her.

After I viewed our roster, I clicked on her team page and viewed the list of donations….The Bloom Family, Ms. Inda, Cindy from my writer’s group and Danette..who I am looking forward to meeting, have all made donations in Samantha’s name.

I guess what I am trying to say is that your concern, your support, helps us fight the good fight and keep my pity parties limited. Thank you, thank you, thank you.

So, this Josh Groban song has been in my mind. I thought I would share because it reminds me of you all…..

When I am down and, oh my soul, so weary;
When troubles come and my heart burdened be;
Then, I am still and wait here in the silence,
Until you come and sit awhile with me.

You raise me up, so I can stand on mountains;
You raise me up, to walk on stormy seas;
I am strong, when I am on your shoulders;
You raise me up: To more than I can be.

Thanks for pulling me out of my party 🙂 See you next Sunday.

XO-
Us

Hi Everyone! I am starting to post snippets from my book, The Detour. Pull out your red pen and let me know what you think.

I sat in the emergency room at Children’s Hospital assessing my neighbors. Young mothers with runny-nosed toddlers, large families who didn’t speak English arguing amongst themselves…a TV in the corner droned old 80’s sitcoms. I sat down on a threadbare sofa.

“Don’t touch anything” my husband said. “Who knows what this place is crawling with.”

I looked down at my daughter. Her complexion had taken on a grey color, her eyes were wide. I had never seen eyes so wide. I could see the whites around her iris and pupils. Her head was moving back and forth against the baby carrier. Mechanically I pulled out some antiseptic wipes and laid them on the seat beside me.

“Here” I said pointing to the wipes.

“Thanks” Bill proceeded to wipe everything down in his immediate vicinity; hands, face, car seat carrier, arm rest of the chair.

“It’s not going to help” I wanted to say. “This whole place is infested with something invisible, untouchable, uncontrollable, beyond us.” I didn’t say a word but let him try and destroy the onslaught of bacteria that seemed to be seeping into our lives.

I had never felt so dirty in my life. We left the ski resort in a hurry; anxious to get Sarah down the mountain, to try and figure out what’s wrong with her, to try and fix her. I had stuffed my hair into a ski hat and pulled on yesterday’s sweater. I had a musky, unshowered smell about me and was trying desperately to remember if I had brushed my teeth.

I had smeared on a little make-up in hopes of covering up my worry. I smiled to myself at the irony….cover-up to cover-up emotion, foundation to strengthen our foundation. My shield against whatever was going on…. as long as my lipstick is refreshed, everything will be ok.

Bill handed me a Power Bar….peanut butter. It was sweet, sticky glue in my mouth. I guess I needed to eat something. I really wanted a cup of strong, hot coffee; or maybe a shot of something, a little Jack trickling down my throat, tingling my toes….ahhh self medication.

But no coffee, no Jack; just the three of us waiting with the rest. Damn.

“Samson? Sarah Samson?” The nurse called.

“That was fast.” I said to my husband.

“The benefits of good insurance.” He answered.

Baby C is doing very well! In fact he was able to go home last week. The doctors even threw out the word ‘miraculous’! This is huge….docs keep the ‘M’ word very close. The M word is good. The M word should be coveted, an M from a doctor is well…..miraculous! Thank you to everyone who shared concerns and to sweet Miss. Heidi who immediately wanted to know where to send the lasagna 🙂

My house is full of laundry, excess easter basket grass and dust bunnies. I’m not a great housekeeper but I usually try to keep my dust bunnies in check. Why is my house in such disaray? Because last weekend we were up in Beaver Creek, Tuesday I skied with dear ol’ dad and Cami AND we spent a lovely night at the Magnolia the weekend before that!!!! WOW! I did a count of my ski days for the season and I made it to ten. Ten! The last time my ski days were in the double digits was the year Bart and I got married; 2004. My life has changed a bit since 2004 but I was still able to make it to ten which is well….miraculous!

These days would not have been possible without the help of the Grandmas. They pitched in, changed diapers and bounced the baby while I bounced down the mountain.

So I wrote a poem….

Grandma, Grandma goo,
Grandma, Grandma gee,
Without you
I could not ski

Thank you, thank you do
Thank you, thank you dot
What would I do without Grandmas?
This, I know not!

Happy Spring!

Us

So, I wanted to write this post about my FIRST night away with my husband since Samantha got sick and what a fun time we had BUT then I got diverted. I learned about the birth of Baby C and he and his parents have been on my mind all day. Without divulging too much, Baby C had a bit of a rough start but he has great, smart parents who are committed to his health and happiness. But it got me thinking about the weekend, a year ago, when I was confronted about Samantha and her future. My friend Christy gave me a poem ‘Welcome to Holland’ (it’s posted on the blog). I thought, well that’s a great poem but we’re not going to Holland, thank you very much.” A year later, I think we’re part of the Amsterdam tourist bureau. Is it ok? Yes. I like Rembrant and tulips but I’ll always yearn for a pizza or two.

What is in our Holland?

Have you ever been to Disney Land (World?) Did you ever ride the Small World ride? I think of our ‘Holland’ as the Small World Ride. Yeah, Space Mountain is much more exciting but there are a lot of little people in the Small World ride who are there to welcome you and remind you that you are all in this boat together.

I think I know of families who were sent to Holland as a layover and eventually got sent to Italy. These are the best tourists because they will never take the gelatto for granted, they know what a work of art the David is and that the Duomo is a miracle. Is it because they spent the last year in wooden shoes? Maybe. But for those, the sun is a little brighter, miracles mean more and happiness is cherished.

So, to Baby C and his parents, I know no one knows the future. If you land in Holland for a little while that’s ok. Smell the tulips, ride the boats, see a Rembrant and don’t forget there is a group there to welcome you. We are sitting in the tulips, clicking our shoes and offering advice.

It’s a world of laughter
A world of tears
It’s a world of hopes
And a world of fears
There’s so much that we share
That it’s time we’re aware
It’s a small world after all

Have a sweet night Baby C.

XO-
Us

So, as a friend of mine put it, “You told us you were going home and that was it.” Yes, she’s right….it’s been a while since we sent an update. I gotta tell you though, the hospital sucked the life out of me; suck, suck suck. I don’t know how we got through 45 days in six weeks at Children’s last year. For those of you who saw us last year and thought we were on the verge of a breakdown, I appreciate you not saying anything. Those of you who saw us and just handed us a glass of wine….well I appreciate you too 🙂

So, was it worth it? Well yes, but if you ask Samantha, she might have a different opinion. We came home with peace of mind. We have weaned Samantha off of so many siezure meds that anytime she made a jerky movement, stared off into space, I questioned if she was having a seizure or even worse, that her spasms were back. Well, our neuro said no, what is a seizure is a seizure and that’s it. AND our neuro said it with a smile. I love our neuro but business is business she’s not one to sugar my coffee, butter my toast or tell me that things look good when they don’t. You know what she told me? She told me things look good 🙂

We still struggle with seizure control. When Samantha has a good day, everyone has a good day and I think it will be that way for a while.

On a side note….thanks to everyone who have joined the SAMMER HAMMER!!! Again, mark your calendars for April 20th at Washington Park in Denver. The Hammer has $360.00 to her name. We are very touched you are spending your Sunday with us.

I’ll try not to wait two weeks again. Happy hump day everyone!

XO-
Us

Samantha has done a great job of showing the doctors what they needed to see. Such a good job in fact, that we are able to go home tomorrow (Wednesday) morning! Whoo Hoo!!!

So, what did we find out? Samantha’s seizures are primarily in the left frontal lobe. She does however have some other ‘discharges’ throughout the brain therefore Samantha is not a candidate for surgery right now. They will take a look as she gets older or if the seizure type changes.

Here’s the good news, her infantile spasms are still gone and her jerky movements are just ‘Samantha movements’. Our neurologist felt really positive about the EEG and said it has really improved from the last couple months. The diet has been a positive change and she wants us to remain on one seizure med. Whew! Not too bad for a days work!

We are signing off for the night. Thanks so much for all the positive thoughts!

XO-
Us

Samantha and I spent the night battling evil catheter nurses, seizures and begging for drugs like a junkie on Hollywood Blvd. Sound like fun? Well at least the coffee is free.

Kids who have muscle issues sometimes have a hard time emptying their bladder..you know the song…the hip bone’s connected to the leg bone? Well it is…it’s all connected. So we’re doing a pee-pee study while we’re in here. Enter the evil catheter nurses. After 3 nurses and FIVE tries, I kicked them all out and told them to get the Urologist. They really weren’t tyring to be evil but when it comes to five unsucessful caths anyone can look mean. I guess when the nurse looks up at you and asks if your daughter is ‘anatomically correct’, it’s a bad sign. How do you respond to that?

So, it was midnight and Samantha was awake and mad. At home when it’s midnight and Samanth is awake and mad we sedate her but since we’re looking for seizures….no sedation. Since Samantha hasn’t slept since 6:00 this morning, she started seizing. Well, I guess that’s what we’re here for, right?

Five seizures later, it’s 2:00 in the morning and I am begging for drugs. “Give my daughter the goods!!!”

The nurses called our doctors and ten minutes later Samantha is snoozing in her crib…there is a god. I hunker down in our nifty little hide-a-bed and try to get some sleep.

6:30 the people from the lab came in to collect blood and urine. I told them no one in their right mind should be drawing blood from anyone at 6:30 in the morning and asked them to come back later. They failed to see my reasoning but did leave.

Four hours of sleep is do-able. My dad came in at 7:30 with a big coffee….mmmm…coffee.

First day in the hospital! Samantha is hooked up and I’m watching squiggly waves on the monitor now. She had one seizure….as soon as the last electrode was placed on her head she gave a little show and then fell asleep for 4 hours. I think it was the airplane glue. Since the eletrodes have to stay on a squirmy baby for 5 days, they glue them onto her head with airplane glue and a small hairdryer thing…kid you not. An hour of breathing glue fumes….whooo! Stoney, zoney, pony.

We had a visit from our pharmacist as we tried to sort out Samantha’s meds. After explaining our drug protocol, he decided to keep me in charge of Samantha’s medication distribution. “I wouldn’t want to mess with your mojo.” He told me as he was on the way out of our room. Yeah! Don’t be messin’ with my mojo man.

That is about the extend of our day! Lots of visits from nurses and doctors…nothing definate yet. The new hospital is great and on-demand movies include Cinderella and Harry Potter. Could you ask for anything more? Really.

My mojo is tired; I’m hoping our baby girl is too. Here’s to tomorrow and more answers.

XO-
Schichtel Clan

So it’s been a year. A year ago on this Sunday we were sitting in the E.R at Children’s watching grim-faced doctors run in and out of our room, order tests, return with results and order more tests.

365 days.

I am celebrating by having a piece of fabulous, home-made, made from scratch, double-layer, chocolate birthday cake; made by my good friend, Christy. Christy and I weren’t friends last year. We knew each other but I don’t think she would have made me a fabulous birthday cake.

365 days.

I was watching Hope Floats this afternoon while Samantha took a nap. It’s a cheesy, chick-flick but mindless entertainment when you’re laying on the couch in a comatose state. It’s good for Sunday afternoons. The only redeeming quality about Hope Floats is that Harry Connick Jr. is the male lead. Harry……almost as delicious as this chocolate cake…..but not quite.

A chick-flick cannot end without a meaningful quote about life. It’s a chick-flick requirement. The quote was (something like this, I was napping) “Life has beginning and ends. The beginnings are scary and the endings are usually sad but the good stuff always happens in the middle. When the beginnings seem scary, just wait for the water to settle because hope floats and it always rises up to the surface.” Awww, I thought…I like that hope floats.

I am now giggling to myself as I write this. I just changed Samantha’s very full, healthy diaper…. as I was walking down the stairs I thought, hmmmmm, you could say the same thing about poopy. Poopy floats.

365 days…..Harry Connick Jr……chocolate cake…..can I recover from the poopy comment? I’m trying.

I start school tomorrow to get my Nursing Assistant certification. Talk about scary beginnings! I am now required to retain and process information….oof. Funny thing, this beginning wouldn’t have happened if it had not been for the other beginning 365 days ago; nor would I have chocolate cake or a reason to celebrate this evening.

365 days….hope floats (and yes, I guess other things do too 🙂

It takes a village to raise a child. In the case of my child it takes a very, very large village with a good pharmacy. We are very lucky that the most active villagers are Samantha’s grandparents. I know this isn’t always the case and I am continually counting my lucky stars.

My birthday weekend was celebrated in Breckenridge with Bart, Samantha and her grandparents, Pops and Nonnie. What a fabulous weekend! Good food, good snow, good company and a chance to connect with my inner Beastie. My Beastie is amazing. She is strong, fearless and a kick-ass skier (ha!). Unfortunately, two back-to-back pregnancies and a sick child had sent my Beastie into hibernation.

It takes a village to release her. The capable hands of Nonnie watching Samantha so that I can ski without obsessively checking my cell phone. Dad and Bart who promptly led me up to the Peak 8 bowl without a warm-up….ahh the confidence they have in me! I am pleased to announce that my Beastie can be summoned with a little help. She shakes off the cobwebs, pulls down her goggles and howls at the moon! She jumps off the top of Peak 8 without a second thought. She needed to be released. I am grateful to the villagers who let her come out and play.

As I write this I am sipping tea at a coffee shop while Grandma Judi watches Sam. Ahhh, my good village with strong warriors and smart medicine women.

The moderator of my writing group said to me “You have been given wings.” Hmmmmm, wings make me a flying Beastie…..ROAR!