Month: November 2009

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.