Tuesday, April 22, 2014

A Conversation

A customer just asked about Emily - he wanted to know where things were with her health, etc.
We talked about her heart and then her feeding tube.

"Her not eating is probably more an issue of parenting," is what he said.
Clearly he knows what he's talking about.

A minute later Em came and grabbed my hand because she wanted an Otter Pop out of the freezer.
She doesn't eat them, she just likes to lick them when they're frozen.
Emily uses a little hum to communicate (one of these days I'll have to record it for you - it's adorable) and the customer heard it as Em was asking for an Otter Pop.

"She doesn't talk?"

I told him that she didn't and when he wanted to know why I explained about her chromosome deletion and how delayed speech was part of the package.

"I always knew something was wrong with you - I guess you just passed it on to your daughter."

I know he thinks he's funny ... he's not.  I rolled my eyes and walked away from the conversation at that point.

Maybe I'll spray weed killer on his plants...

Thursday, April 17, 2014

My To-Do List

-Do the dang laundry

-Find my kitchen counter ... and the table ... and the foot of my bed ... and ...

-Find two hours where I can go and buy my daughter a new wardrobe.  Nothing in the 2T size range fits any longer and her shirts are becoming belly shirts.

-Tie the quilt that I volunteered to finish (someone should glue my mouth shut)

-Finish the month's worth of paperwork I'm behind on

-Pay my bills before they shut our power off

-Take Emily to the park once every day so that she doesn't lose her mind

-Survive the ten days that Jason will be gone

-Try not to be bitter that Jason is gone for ten days - backpacking - while I'm home with this to-do list

-Remember to eat at least two meals a day

-Find a pair of pants that actually look good ... and that don't elicit the 'oh you're pregnant' comment from people who should know better than to ask such a thing.

-Get liposuction so that people won't ask about my 'impending pregnancy' in the future

-Or keep exercising like I've been doing ... even though I'm dead tired at the end of the day

-Okay it was just one person but still...

-Decide if I'm going to respond to the email from the New York Times reporter

-Learn 15 new signs so that I can teach Emily 15 new words

-Learn the names of the Bubble Guppies (oh my stars - you thought my child loved Mickey Mouse?  We've taken that love to a whole 'nother level with Bubble Guppies)

* * *

You get the idea - my life is insane right now.  Amazing how it's the same level of insane every single April and May.  (The joy of owing a garden center.)

Let me share my current favorite picture of Em - oh I love this girl!

(And PS.  I really won't be bitter that Jason is gone - it's something he loves and I'm happy he can go. He will just owe me BIG time when he gets home.)

Monday, April 14, 2014

Heavy Hearts

Oh World.

My hometown has suffered a blow.
My heart has suffered a blow.

How do you come to terms with the fact that a childhood friend - a girl you played with in her home - a girl you knew practically your whole life - had six sweet babies that she killed?


It's national news now - this story - and to hear about it and to read the comments directed at her -

I keep thinking of her mom, one of the kindest women you'll ever know -

I'm just sad.
That is all.

Monday, April 7, 2014

My Monthly Post

Last week I was invited to an elementary school play by my friend's daughter.

In another life I spent a lot of time with my friend's family - I was an adopted aunt to her kids.
Once I got married and after Emily was born I didn't see my friends much.
It may not have been the right approach to my life, but at the time, I had a hard time wanting to reach out to those who never even took the time to ask me how Emily was doing.

Back to the play.

I love my friend and her family and wanted to support her daughter and so I went and enjoyed an evening of a grade school version of Seven Brides For Seven Brothers.

When it was over I came home and cried for an hour.
My mom asked me about the play the next day and when I told her I cried she wanted to know why.

I had a hard time putting it into words.
My friend and her family represent a time in my life that was easy...a time that was carefree...and also a time that was tied to one of the greatest heartbreaks I have endured.

One of these days I'll write about that.

Other than her kids getting older, her life is basically the same as it was four years ago, and I feel as if I've lived fifteen years in that four year time span.  And my life is not even a little bit easy or carefree right now.

(I wouldn't change it - for the record...well, I wouldn't change my little family. I could use a break from some of the other part of the hard that is my life.)

"I no longer relate to her," is what I told my mom.
"She doesn't have any idea of the life I've lived because she chose not to be a part of it.  I can't possibly fill her in on the details of my life, and I'm not even close to the same person I was then."

And because I haven't built other memories with her, the memories that stand out are ones that make me sad - because as ridiculous as it seems - I have never felt closure over the heartbreak I went through when we spent so much time together.

How do you continue a friendship based on that?  Or do you?

I love my friend and would do anything in the world for her and her family - I just feel like I've become a stranger.

Does any of this even make any sense?

* * *

See - this is why I don't write - it must surely come out as a jumbled mess!

* * *

In other news:

Emily is doing great.  She is happy - she is healthy - and she's in love with Bubble Guppies.
Have mercy.
One day she discovered Amazon Prime on my iPad (don't ask me how) and she found a new world of shows.

She's learned how to effectively communicate 'no' and shakes her head at Jason and me twenty seven million times a day.
Next to playing in the park, bath time is her favorite activity.
She loves to lick frozen Otter Pops (when they're in the package ... not if there's a chance she'll get any flavor) and asks us to open the freezer over and over again so that she can get a fresh one.

As for Jason and me ...
We need more sleep and the busy season for both of our jobs is here.
I'm not sure how we will get everything done that we need to, but we'll give it our best effort.

Tonight I tried to jump up and grab onto the monkey bars at the park and nearly killed my elbow.
A young girl from our neighborhood was there and she had been peppering me with questions every time I climbed to the top of the slide that she claims ownership of.

"What is your favorite bird of prey?"
"What is your favorite type of wolf?"
"What is your favorite wild cat?"
"What is your favorite bird?"

She's on the Asperger's spectrum and has an incredible wealth of information in her head.

I answered her questions and her reply was always something like, "did you know the giant panda is endangered?"
I learned more about endangered animals tonight than I've ever known.
At one point I looked at her and asked, "how in the world do you know this stuff?"

"It's just there, floating around in my mind," she told me.

But back to the elbow.

(I can't keep a train of thought to save my life.)

I yelped in pain when I tried to grab onto the monkey bars and she asked over and over again if I was hurt.
I told her that I had broken my elbow during the winter and she said, "You are still healing."

I guess she's right.
No more monkey bars for me.
It's good we have the swings.

Thursday, March 20, 2014

Oh Look, I Wrote Something

Let's see...
Where did we last leave off?
I have no idea.

Pretty much my entire family - and by entire family I mean my mom and my sisters and my brother and my nieces and nephews and myself - got sick and almost died.  We're okay now but there was a moment or several where we weren't sure what way it would go.

My sweet cousin brought me Baskin Robins mint chocolate chip ice cream because she loves me and knows it's my favorite.  She brought it to me over a week ago and I ate some tonight for the first time.

I made the best spaghetti sauce from scratch - it was amazing - really.

Jason spends a little bit of time every single day discussing the love lives of the characters from the newest Disney Jr. show 'Sheriff Callie.'  Tonight while we were eating dinner he googled the show and found out that he was in fact right: Sheriff Callie and her deputy Peck have a little bit of something going on.

(Oh my goodness - this man makes me laugh.)

Emily has had an ear infection forever, and has been on two different antibiotics.
She broke her eardrum when she fell and developed an infection and can't shake it.
She's also got a rash that we can't figure out...she's had it for a few weeks.
We'll go back to the pediatrician again in a few days and see if we can figure out what's going on with our sweet girl.

She is, as usual, such a happy sweet girl - and she loves being outside.
The weather can't warm up fast enough for her.

We recently got Em a new bed - again.
This one will stay - regardless of what Em thinks of it.
This girl.
If she's not snuggled up to her daddy or me she doesn't sleep well.
We've been grateful that we have a king size bed - even though it doesn't seem nearly big enough when Em's stretched out.

At the very least, I can sleep comfortably in this new bed.

Overall our little family is doing well...and we're grateful for that.

Thanks for checking in...

Monday, March 10, 2014

Taking A Deep Breath and Moving Forward

"Mommy why does Em have a broken heart?"
That's what my niece Sami asked her mom.

"Because that's what Heavenly Father decided Em needed to come to this earth with," is how my sister responded.

"But I don't have a broken heart," Sami said.

"No, you have a tone.  Em has a heart that needs help and you have a tone that needs help."

"Ya ya ya," is what Sami ended the conversation with.

* * * * *

It seems that this past weekend was filled with big neon signs pointing directly to Em's little heart and all that comes with it, and it left me wanting to curl up with the blanket my grandma made me when I was a little girl and have a good cry.

On Sunday I took Em into the Mother's Room at church to feed her.  We walked in and found three sweet babies being nursed.
I sat Em on the diaper changing table and hooked her feeding tube up and fed her and then left the room as fast as I could.
I went back to where Jason was and whispered to him, "that was a teeny bit hard on me today."

I watched through a window as Em played with about 12 other kids her age - and as I listened to all of them talking my heart felt a little twinge of sadness.

Combined with a few other things that are just hard sometimes, I went to bed last night with wet cheeks.

* * * * *

I'm sure it's a normal parent emotion - this that I'm feeling right now...
Parenting is not for the faint of heart is it?

Today I read through the official report from the team of doctors we saw a few weeks ago regarding Em's feeding/speech/etc.

One of the doctors said, "Emily has a severe oral aversion that is not common."

I knew that, but to see it and the rest of her medical history printed in black and white ... it's good she came to earth fighting.

It's knowing how hard she has to fight that makes me a sucker for Em's eyes and her silent but incredibly loud way of asking for things.

Like these cardboard stand-ups:

Sunday, March 2, 2014

Emily's First Real Injury

It would seem that Emily thinks she can fly.
There is no other explanation as to why she climbed to the top of our couch and dove off - head first.

She is more bothered by the flash from the camera than the bump on her head.

She landed on tile.
I wasn't home but from what I've been told, there were lots of tears.
With good reason.

We ended up taking her to the after hours pediatrician just to make sure she was okay.
The nurse took one look at her head and said, "You're the first mom who hasn't exaggerated the size of a goose egg."

We kept an eye on her that night to make sure she didn't have any problems associated with the fall, but she recovered well.

This picture was taken the next day:

With the right lighting you can see that the entire left side of her forehead is bruised - and that bruise goes all the way to her nose and under her eye.
We've been warned that her eye will likely turn black.

Poor sweet girl.

* * *

In other news, I'll be buying a big padded rug to put behind the couch...and maybe a parachute.