Friday, July 25, 2014

On Being Emily's Mommy

So here's the thing.

There is something about living your life every single day with the question of 'what if' in the back of your mind, or the not so back of your mind depending on the circumstance, that changes you.

There's something about quieting the fears, over and over again, every single day, that makes you look at life differently.

And there's something about the heaviness of an unknown future, more unknown than just the unknown that is part of existence, that makes you weary.

There are a lot of tears, there is a lot of grief that hits you when you least expect it,  there is a lot of telling yourself over and over again that it's okay to let go of what society tells you is the norm, there are quiet moments when you wonder if you are always, for the rest of this life, going to feel the heartbreak that came the day you were told there is something wrong with your baby.

But here's the other thing.

There are moments of clarity, glimpses of the bigger picture, of the eternal picture, that can only be defined as divine ... and in those moments of clarity you know that all of it - the good and the bad, the bitter and sweet - it's a gift.

It's a gift bigger than you can comprehend, and because you know it's a gift ... because you know she's a gift, you live your life differently than you might have otherwise.

You play in the water more, even if it means changing her clothes three times a day.
You laugh at the puzzle pieces that are thrown across the room, because you know she does it to hear the sound once they land.
You sing the alphabet song 27 times a day.
You let her sit on your lap while you're working, and patiently delete what she manages to type.

You stop at every single little thing that has a number and you wait while she points to each one.
You snuggle her to sleep every single night because it's what she needs.
You willingly share your space in the bed when she wakes up and comes into your room every morning between 2:00 and 3:00 because it's also what she needs.

And in those moments when your patience is stretched as thin as you think it can be stretched - you find a little bit more, and you remind yourself that she didn't ask for any of the hard parts of her life.

And when you finally drift off to sleep at the end of each day you hope to one day have even a portion of the courage and strength that this little girl has - and you thank God that you have the blessing of being her mommy.






Monday, July 21, 2014

Swimming and Puzzles - That's All We Do

Hey World,

I don't know about you, but I've been busy.
There was a time I blogged every single day - I had stories to tell and I never ran out of thing to write about.
Life isn't as exciting as it once was that's for sure - but I wouldn't change anything.
Snuggling with Emily every night makes up for every ounce of lost excitement.

Jason has been home for a few weeks and we've enjoyed our warm summer days.
We've done a lot of swimming ... actually, Emily has done a lot of swimming and Jason and I have done a lot of watching.
We're on our third pool of the summer.
The first was too small.
The second was too big.
And the third was just right.

(Actually the second one wouldn't hold the air and we gave up.)


 * * *

Jason and I went to a local production of Les Miserables a few weeks ago.
It was an outdoor theatre and it was perfect.
The sun set as Eponine sang "On My Own" - and really, it was perfect.
I've seen Les Mis on Broadway four or five times, and yet this show was more touching to me than all of the Broadway versions.
I was glad it was dark so that those around me couldn't see how much I cried.

This past weekend Jason, Becca, my mom and I saw Wicked.
I love it and could see it every week and not get tired of it.

Jason's parents drove five hours to be here to watch Emily while we went.
I was so grateful for their willingness to do that for us!

* * *

In all of my spare time (which is usually from the hours of 11:00pm - 2:00am) I redid one of our bathrooms.




I love how it turned out.
A neighbor of mine does finish work and when I told him that I wanted wrap around shelves he was more than happy to make them for me.
It's nice to know talented people.

* * *

I have a lot to update where our little lady is concerned but I'll save that for another day.
She's well and she's happy.
And she's two weeks away from turning three!
Where did the time go?!


Monday, July 7, 2014

I'm Feeling Lighter


We went hiking tonight.
It was the first time I've been hiking in a long time.
A really long time.
Truthfully, I was nervous to go because I was sure I would die.

In my other life I hiked three or four times a week, and I've missed it so much.

Tonight reminded me that I need the mountains...I think my soul needs the mountains.

I won't wait so long to go hiking again.

Emily sang the entire way up the mountain - there is nothing sweeter than Emily singing.

And there is nowhere more beautiful than where we live.












Monday, June 23, 2014

Simple Reminders

One night last week I stopped at a new park I had seen on the drive home the day before.
In our book, the more slides a park has, the better it is.
This park didn't disappoint and Emily was in heaven.

There were a lot of little kids playing, and one little boy, who was maybe six years old, took an interest in Emily.
After several attempts at talking to her, and only getting little squeaks and finger pointing from her, he turned to me and said, "She's a shy little one isn't she?"

I explained that Emily wasn't shy - she just couldn't talk.

"Really?  She can't say anything?"

"She can say words with sign language," I said, and then asked if he knew what sign language was.
He said he did and we left it at that.

A few minutes later Emily's shoe fell off and the little boy jumped down from where they were playing and got her shoe, and gave it back to her.

Emily made the sign for thank you and the boy looked at me with a question on his face.

"That's 'thank you' in sign language," I told him.

"I had no idea," he said.  He sounded like such a little grown up.

I could tell he was thinking about it for a minute and then he said, "Gracias.  That's thank you in Spanish.  I'm learning a language just like she is."

I immediately got a little teary eyed at the innocence and compassion of this little man.

He wanted nothing more than to relate somehow to Emily - to understand her.
And in his way he did just that.
He took her differences and handled them perfectly, and made it so that there was no difference at all...they were two little kids playing together, both of them learning a language that would allow them to communicate.

In that moment I hoped with all of my heart that people would always show my sweet Emily that much love, and I was reminded of the need there is for me to also extend that same love to everyone I come in contact with.

We should all spend more time at the park...that's the moral of the story.






Wednesday, June 11, 2014

They Should Make Longer Ropes

I'm at the end of my rope.
Truly.
I need something to give, but there is not a single thing that I can change right now to make life less end of my rope-ish.

Here's just a taste of life recently:

My debit card number got hacked.  I caught it after just one charge, and the bank blocked my card.  I don't usually carry cash and so I'm mostly stuck until my new card comes.  Tonight I took Jason's card to go and buy milk.

I ended up in the ER over the weekend due to a mosquito bite that quickly turned into cellulitis.  Enough people told me that cellulitis is not something you mess with, and has the potential to be life-threatening that I took them seriously and went to the ER (it was late enough that no other medical facility was open.)  They put me on a heavy duty antibiotic and it looks like I'm going to live.

Emily's occupational therapist came today and after assuring me that Emily is smarter than any other child he sees, he kindly told me that he feels Em's lack of speech at this point is a more severe problem than we've assumed up to this point.

And this comes after learning this week that insurance won't cover private speech therapy because speech isn't something that Em had and then lost.

The therapist also recognized that keeping Emily from being bored is a full-time job.
And it is.
He gave me a few apps to download that are for preschool/kindergarten age kids - he thinks they will be at the level Emily is ready for.

Bless her heart.
She's leaps and bounds ahead of the game and she can't even say the word hi.

It's becoming a source of frustration for her actually.
Emily is the most calm, patient, happy toddler I've ever known, but in this one thing, she loses patience quickly.  And all the sign language in the world doesn't help that frustration...because in her mind she thinks she's talking, but all that comes out are her little squeaks.

(Speaking of patience...I was texting with a person from our local search and rescue team.  I have some medical supplies I am going to give to the team.  Every single time this guy referred to patients they treat, he spelled it 'patience.'  I wanted to tell him that I could only give him the supplies once he learned how to spell the word right.)

One more little thing and then I'll let you see some pretty cute pictures of our girl.

Let's make a pact right now...that we will never ever ever ask someone when they are going to have another baby.
Say it with me: "I will never again ask a woman when she is going to have a/another baby."

I don't need to elaborate on the reasons why we're making such a pact right?
Because I will.
If I need to.
I'm just worried I might not be able to make it sound nice...and stuff.

Here - some pictures.
This little waterfall is right outside of my office.
When Em needs a break this is where we go.


















Sunday, June 1, 2014

For The Three Of You Who Still Read This Blog

May.
I'm so tired of May.

Oh.

It's June.

I've never been more grateful in all of my days for a month to be over with.
May was brutal.
Long hours at work - even longer hours at home after work - doing more work - and a stack of paperwork so high I may never get caught up.

And let's not even talk about the current state of my house.
Jason ran next door tonight to give the neighbors something and he came back and said, "Their house doesn't even look lived in.  Unlike our house..."

There was a pause and then, "But I'm glad our house looks lived in."

If there is some subtle message there I'm choosing to ignore it.
I did clean a bathroom tonight so that has got to count for something.

Jason will be gone for three out of the four weeks in June - I'm probably going to be coming here the end of June with something like "June.  I'm so tired of June."

If I could have anything in the world?
It would be a nap.
A nap that could last for hours if I wanted it to.

Speaking of...


If I knew the source of this picture I would site it.  I borrowed it from Facebook.

My goal for this week is to return three of the phone calls I've ignored - all regarding meetings and appointments I need to make so that we can move forward with Emily's next phase of therapies.

(Are you going to think I'm a bad mom if I mention here that therapies make me weary?  Especially therapies that we've had Em's whole life - once or twice a month - that as of yet - have shown very little benefit.)

((Can you even pluralize therapy?))

My other goal for this week is to make an appointment with the dentist  - both for me and for Emily.  I've had a temporary filling since last November that has long lost its effectiveness ... with my luck I'll need another root canal because I've put it off for so long.

And Em needs her teeth cleaned, and it will require sedation to do it ... which will require a visit to our favorite children's hospital.  (Are you going to think I'm a bad mom if I mention here that trips to the children's hospital make me weary?)

*See above statement about naps.  At this point even sleeping makes me weary.*

Emily is happy and well taken care of - and that makes up for every other thing I don't get done in my life.
I could post every day for the next three months and still not have shown you every picture I've taken of her that I'm in love with.

I need to do a scrapbook.
Oh for the love ... who am I kidding ...
If I had time to make a scrapbook I'd take a nap.



My computer just told me that unless I plug it into a power source it will sleep soon.
Even my computer gets a nap.





Tuesday, May 6, 2014

Have Mercy

May is our busiest month at work.
We're six days in and I'm exhausted.
I got to work Saturday morning at 6:30 and worked until 8:00 that night.  I came home and after loving Emily for a few minutes, and snuggling with her until she fell asleep, I worked until 1:00 in the morning.

I'm so grateful that I can leave Emily with Jason and know that she will be loved and taken care of completely.
While I was at work Jason took Emily on a bike ride.
One of our favorite mountain paths follows a river and Emily was in heaven.

(Are you impressed with Jason's hair combing skills?!  I left him a note that morning telling him to bring Em out to work and I would comb her hair but...)


Sometime around 4:30 Saturday afternoon I took a quick break in the office to grab a bite to eat.
The lights were turned out in hopes that I could hide.
I took one bite before the phone rang.
I thought about ignoring it but finally gave in and answered.

Someone needed to talk to our 'duck lady.'
We sell ducks, chickens, bunnies, and turkeys, and we have an employee who knows everything there is to know about the animals.

I sighed and put my sandwich down and ran to the other end of the store to get the duck lady.
She was helping a customer.
She asked me to take a message, and she promised to call as soon as she was finished.
I ran back to the phone and asked if I could take a message.

"No, you cannot take a message.  This is an emergency.  Tell her that so and so is on the phone and she will want to talk to me."

I sighed again and ran back to the duck lady.

"It's an emergency," I said.  "She won't take no for an answer," I said.

The duck lady said she would take the call and looked at me and said, "I need you to help this customer."

Wonderful.

Helping the lady meant catching 6 baby chicks and putting them in a box.
I'm not an animal person.
I've never been an animal person.
I don't even like to pet my sister's dog who is practically a member of the family.

"I'll take that one," the lady would say and I would do my best to catch a chick.
Several times I would have the chick in my hand before the lady would say, "no, I want that one instead."

So there I am - doing my best to catch 6 chickens and all the while the lady is asking me questions about their care.

"I don't know anything about chickens," I said over and over and over again.

Ask me about plants - any plant - ask me to look at a leaf or a flower and identify it - I can probably do it.
Not chickens.
Never chickens.

Finally, after the sixth or seventh question, I looked at the lady and said, "Seriously.  I don't know anything about chickens - not anything.  And no matter how many times you ask me I'll just tell you I don't know."

It was at that point that my dad came out of the stock room with a smile on his face and answered the lady's questions.

I went and washed my hands for 5 minutes before I finally finished my sandwich.

Have I mentioned I'm not an animal person?
My daughter on the other hand?