The world is a funny, funny place.

And Friday was no exception.

Friday afternoon was spent at Children’s, thankfully, thankfully, without Samantha.

I had a parent board meeting….

which is always good…because I get to connect with other parents and I get to see one of my favorite people; Miss Tracy.

And then Miss Tracy and I went to go see one of our favorite families who sadly are on week eight in the hospital. And we all talked…

We talked about things that seem forbidden to other families;

We talked about life

We talked about death

We talked of these things with an odd sense of normalacy because all of us have been a family in crisis. That is one reason why we all bonded so quickly.

I talked about Jack. How I think of him everyday but not in a bad sense, just in a sense that he is with me, everyday. I feel this with such certainty. It’s normal to me and amazingly comforting. It’s like the air I breathe, the water I drink. He is just there.

I left the hospital with a solid foundation of peace.

That night I went to an ornament exchange party hosting by another of my favorite people…Sweet Sue. The ornament exchange has rules…you pick a number and as your number is called, you can steal an ornament from a fellow party goer that has already been unwrapped or select a new, unknown, wrapped ornament from under the tree.

I had number 13 of 18…not a bad number. The higher your number the more choices to steal! I watched as people unwrapped and decided I would only ‘steal’ an ornament if someone had a frog or an angel…

Frogs for Jack, angels for Samantha (see November 30th post).

As lovely as the ornaments were, no one had a frog or an angel. So I picked a completely random package from under the tree and unwrapped it.

And I unwrapped a frog,

and another frog,

and another frog….

Three frogs for our tree. And I started to cry in the middle of Sue’s ornament exchange! I cried because the day had been so special to me; emotional but so very heartfelt. I cried because I had been talking and thinking of Jack throughout the day and here he was in this random Christmas ornament; giving me more frogs to hang on the tree. I cried because out of all 18 packages under the tree, I picked the frogs…..

Because I was supposed to.

I cried because life sends you little packages when you need them the most.

The ornament exchange party-goers all cried with me and then decided it would be poor form to steal my colony of frogs 🙂

They’re good ladies.

To everyone who came out tonight,

Braved the cold,

held Samantha,

bought a book,

listened to our story,

Thank you.

Our cup runneth over.

It’s hard to worry about your friends. Tonight Samantha is doing well and I can make meals for others who are in hospital. I can send condolences to our dear friend who just lost his father. I can do this tonight because (knock, knock, knock on wood) Samantha is doing well.

I’m not used to being on the other side of the fence and frankly it’s a bit eye opening and a bit nerve wracking.

I worry. I read updates like a fiend. I wait for updates. I talk to others just to relieve my fear. I think I’m not doing enough. Am I doing too much? I don’t want to bother anyone.

I wonder if this is how people feel about us when Samantha is really sick and in the hospital.

It’s no fun.

Don’t get me wrong, it’s even less fun to be on the other side and I am grateful that I have time and energy to worry about others.

But I want to fix it.

And I can’t.

Crap.

So I thought today, What can I do for my friends who are hurting, who are tired, who are grieving?

Here are words from Winnie….that’s right the Pooh…silly, willy, nilly old bear…. Pooh was stuck in Rabbits’ hole. He was stuck so tight he couldn’t move, even sigh.

While he was waiting to get unstuck he asked “Is there anyone who can sit with me and read a story or offer a word of comfort to a bear wedged in great tightness?”

Don’t fix it, don’t change it because you can’t….just sit with me and keep me company.

That’s all we can do isn’t it?

To all my bears wedged in great tightness tonight, we are thinking of you…offering a story, words of comfort…we’ll sit beside you until you become unstuck….

Heck we’ll even sit beside you after that.

I got a call today from my mom…..

“I just wanted to let you know that she’s okay.”

At first I thought she was talking about my Granny. Granny went in for a couple tests and we’re waiting for the results.

But no, it wasn’t Granny…

It was my Gingerbread Lady….

Made lovingly by Chez Heather when I just a tyke

35 years old this year; pulled out of storage and ready for the tree. She looks pretty good. Happy Birthday Cookie!

Here’s her sultry profile….she’s quite a tart for a cookie…

Looking thoughtful in the tree branches….

I’m waiting for my close up, Mr. Deville…

A couple people posted today about Pearl Harbor. I felt a little sheepish that I had forgotten about the 68th anniversary. I try to keep up on those things…not well but I try.

So I went to Yahoo! to see what they had posted about the 68th anniversary. Here were the top 3 headlines

1. The climate summit– very, very important and very news worthy. I will gladly give the summit the #1 spot.

2.Tiger Woods…

Really?

3. That crazy couple that crashed the White House party

Really, really?

Nothing about Pearl Harbor. I understand that this happened a while ago and maybe a memorial service isn’t the most interesting news. Maybe we would much rather know about Tiger’s torrid affairs (not me personally but golf has never been my thing).

But it reminds us of our history. It is in the fabric of our country.

And in this Twitter, facebook, instant messaging world, we may need to be reminded.

I talked to my dad today about my media rant…

“Well Heather you know that your Great Uncle Jack was at Pearl Harbor.”

“No.”

“He was there with his wife and baby daughter. It all happened so fast Uncle Jack didn’t know if his family was okay. He didn’t know where they were for 48 hours.”

“I never knew that.”

“Uncle Jack worked in the hospital. He had scars on his hands from digging his fingernails into his skin in order to stay awake and keep working. He was one of the first to see the service men come in; burned and broken. Poor Jack, I can’t imagine. Your Great-Grandfather Bumpy was about to give a sermon Sunday night when he found out about the attack from one of Jack’s brothers. The only thing he said was don’t tell your mother.…Ha! Like she wouldn’t find out.”

“Dad, I find this much more interesting than the crazy White House crashers.”

“Real life usually is.”

Touche’ Papa….touche’

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.