A lot of exciting things are happening at the Schichtel household!

My bed arrived last week!

Remember the ‘Stay Away Seizures’ sign from Children’s Hospital? Mama feels it’s good ‘juju’ to have it above my bed:) But look at that cute big-girl bed!

Mama and Daddy ordered a hospital bed but Mama thought it was important that it didn’t ‘feel’ like a hospital bed. Here it is with my friends.

Here it is without my friends. Quite a difference, eh? And a pretty beefy bed. The rails keep me from rolling out and the frame allows the bed to move up and down. I could sleep in this bed for a very long time!

This is Mama’s ‘master control’ that moves the head and the foot of the bed up and down. It’s great when I’m feeling a little stuffy to have me elevated.

This is the crank that moves the whole bed up! Kinda nice as I get bigger. It’s a little easier on everyone’s back.

Mama really tried to make my room just like any little girls room. Is my lamb sitting on an oxygen tank?

A girl can never have too many stuffed animals

Test results are quite positive!

Samantha went to the cardiologist today.

I’m having a love affair.

It’s hard to be sad when you wake up and the donations to your Courage Classic team are up to $2,100.00!

It’s hard to be sad when your daughter greets you in the morning with a big, gummy smile and a slobbery cuddle.

It’s hard to be sad when you walk a labyrinth with good friends, the mountains in the background and a breeze against your skin.

It’s hard to be sad when you think gratefully of how far you’ve come.

It’s hard to be sad when the day starts with good thoughts from good friends and a lovely tin of frog magnets 🙂

Today our son Jack would have been five. Today our son was stillborn at 41 weeks. The day of his ‘birth’ has always been a sad, bittersweet day…..Today I became a mom. Today I lost a child.

As the years have evolved however, this day has become more of a day of remembrance than mourning.

Today is a day that I am reminded to take nothing for granted.

I am reminded that even in your darkest hour, you will laugh again.

And although that first laugh sounds foreign and somewhat inappropriate, the next one will come a little easier and the one after that.

And you never forget….but as time goes by, remembering isn’t so hard.

Happy Birthday Jack.

My computer died on Friday.

It gave me no warning….

No, Hey not feeling too well today, you might want to backup

No Check engine light

Nothing, just a couple computer moans and the light went dead. I sat on the couch frantically trying to reboot but again, nothing.

I feel betrayed.

The good news is that techie hubby pulled the hard drive out and saved what I forgot to backup (for about a month) AND he ordered me a new fancy, light as air, new laptop!

Hubbie is good.

The bad news is that we are sharing a computer until my new-fancy pants one arrives so I’m a little remiss on my writing.

My mother called me yesterday to remind me I’m behind in my blogging and to say she could no longer look at the picture of the great white shark …especially in relation to Samantha’s health.

Okay, I get it…..new picture.

Instead of sharks, I give you puppies in a wagon. And the news that Samantha had a good weekend and has been seizure free since Friday evening (knocking on wood over here!)

Another thing that happens when you aren’t online as much is that you miss when your friends do wonderful things, like donate over $1,300 to your Courage Classic ride.

Once again you all are fabulous. Even more fabulous than seven puppies in a wagon.

Did you ever see Jaws? Remember the guards on the towers, standing there, watching for the elusive shark? Welcome to seizure watch 2010. I don’t have a tower or binoculars but the last two days have been confined to the house, documenting Samantha’s seizure activity.

Sometimes her seizure can be fleeting like a shadow. Was that a shark or a school of fish? Or pretty obvious Hey, check out that dorsal fin.

When I see them coming on, the Jaws theme sticks in my head. Duh…..duh…duh…duh..so forgive my fish analogy. Seizures are the great white sharks of my life.

The good news is that I have become the old swarmy fisherman in fighting seizures. Remember him? The one with the boat? Yeah, he did get eaten but just ignore that fact, trivial…I can spot a seizure, call a neuro, document the time and prime a syringe with seizure meds…all while singing that crazy song swarmy fisherman sang...what was that song?

We have developed a great relationship with our neurologist. She trusts me and I trust her. On days like today, we talk several times….what did you give her? What can I give her? How does she look? When is it too risky to keep her at home? The goal is to try and manage Samantha’s seizures at home, without needing the bigger boat, without needing to head down to TCH.

After day two, we’re still hanging in there. I’ve maned the Ativan harpoons and kept a constant watch on Little Miss. Currently she’s on the floor, content and seizure free since 4:50 this afternoon.

Knock on wood. Perhaps we should order sushi for dinner.

Fingers crossed for an uneventful weekend 🙂

The Courage Classic is less than six weeks away! I need to start taking this training thing seriously! I also need to start raising a little money for this cause so close to our heart, The Children’s Hospital.

The other day I was going up to the second floor of Children’s for a meeting. As I watched the atrium through the glass elevator, I realized how much this place and the people behind it have become a part of our lives.

We will never walk away from the Children’s Hospital; for several reasons. Samantha will most likely not be the recipient of a miracle surgery and go on to live a happy, healthy, ‘normal’ life. Samantha’s little body is fragile and will always have to be treated as such. A common cold can damage her heart, her lungs, her brain. We will always rely on our medical team to help us.

In getting to know our team, I have learned that doctors hug and doctors cheer, doctors cry, they too get frustrated, they stay up late at night to think of the best treatment for our kids.

Nurses remember who you are and although sad you’re back in, are excited when you’re back in their care. They sing, they pray, they have an affinity for Milano cookies. They step into our room and start to think of ways to make both Samantha and myself more comfortable. They send worried pages to doctors when Samantha just doesn’t look right

We give to Children’s because we are a part of the TCH community the same as they have touched our family. Because when Samantha needs to be there, I can’t imagine her in safer hands and because they truly do, love our girl.

If you too would like to give to our ride, you can do so right here: Ride with Samsmom

And hey, thanks 🙂

Some days call for fingerpaints; June 22 just happens to be one of those days

MMMM…Blue

Leave me alone Mom, I’m concentrating….

Look at me go!

Yes, we do have her painting by the wine rack, we’re very French that way

“To enjoy life, we must touch of it lightly” Voltaire

I abandon my husband today.

On Father’s Day of all days.

I kissed his cute head goodbye at 5:00 this morning and didn’t come home until 2:30.

When I did come home, I was stinky and cranky. I took a shower and a two hour nap. Needless to say, I had a great Father’s Day!

Today I plopped my hiney on a bike for 62 miles or what is now called a metric century….sounds better than 62 miles doesn’t it? More impressive…..say it metric century…ohhhh

My stepdad, good friends and I rode the Mile High Century Ride and it was fabulous; LONG and I have a lot of work to do before the Courage Classic but it was great, great to get out.

Jim, Heather and Jonathon kicked my butt. I actually let them kick my butt because it’s Father’s Day and everything.

Not really, I am a tad doughy.

When we finished, I felt the all-too familiar internal pull to head home and check on my family. But when I got there I found them playing in the living room, watching the US Open, perfectly happy and just fine without mom.

I asked hubby if he had a good Father’s Day, just him and Samantha, no events, no plans, reading the paper, drinking coffee, sitting on the couch and watching golf.

He said he had a great Father’s Day.

Hmmmm….I guess hubby needs a little me time too, go figure.