Have you seen my Mama?

It’s always a little concerning when she runs off like this because she keeps very shady company

You thought I was joking?

This weekend included shopping with Mama and Daddy, a cookie exchange with wonderful friends, Daddy’s company Christmas party…..

Yes, Mama did find a dress!

Since they were in the presence of civilized company…

They had to try and behave themselves

But they still find this very difficult….

Mama’s weekend ended on a bittersweet note at the going away dinner for her dear friend Tammy…

We will miss you Miss T!

Mama’s galavanting, out on the town….but you know my favorite place to be!

Hubbie has a Christmas party this weekend.

I thought perhaps I needed a new dress.

And then I went shopping…..

I stood in the dressing room in a little cocktail dress, sucking my stomach in and thinking well maybe with some tummy sucker pantyhose, one of those push up bras and a little duct tape, I could pull it off

Note to self, if you have to alter the body to fit the dress, perhaps it’s not a good idea. Tummy sucker pantyhose don’t work well for me anyway…all the access ‘stuff’ has to go somewhere and I end up with really fat toes.

And who came up with the word pantyhose anyway? It’s along the same lines as moist….and yogurt. She put on her moist pantyhose and ate some yogurt….eeewwwww

So I decided to go for a more ‘conservative’ look since it is a business party. I tried on a longer dress with a jacket….ahhh, So comfortable…like a big sequenced mumu. Wait, I remember this look….my Grandmother wore it to my wedding.

Needless to say, I left the mall emptyhanded and wondering what happened to my look. Perhaps I lost it somewhere in the fat sucker pantyhose.

He he….pantyhose.

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.

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

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.

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!

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.

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.

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.

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.