Sunday, December 29, 2013

Early Morning Musings

I went to bed an hour earlier than Jason and Emily did tonight, hoping to get some much needed sleep.

(Jason and Emily are a package deal.  Where Jason goes Emily goes.  And if Emily doesn't go where Jason goes, she spends the time she is separated from him saying and signing daddy.  If you didn't know her you wouldn't know she was saying daddy.  But there is no doubt that daddy is officially Em's first word.)

Emily bounced on me the minute Jason brought her upstairs and for some reason I can't get back to sleep.

I feel like this first post after the holiday should be a follow-up of all things Christmas, but it's not going to be.  Instead I'll share what I've been thinking about.

I went with my mom and my sisters to see Saving Mr. Banks tonight.
Have you seen it?
I loved it.
It's the story of how Marry Poppins came to be a movie, and it focuses on the writer of Mary Poppins - who isn't Walt Disney.

At one point in the show the writer of Mary Poppins is in a limo with the man who is assigned to be her driver.
The driver is telling her about his daughter who is handicapped in some way.
Later in the show Mrs. Mary Poppins (I can't remember her name) hands the driver a list of names.

"What is this?" he asked.

"It's a list of people who were all born with something - and every one of them achieved greatness.  You tell your daughter that she can be anyone she wants to be."

I have triggers that set off my emotions, and this simple exchange was one of those triggers.
It came after a week of other triggers, and I cried through the last half of the movie, and then through most of the drive home.

The first thing Jason said to me when I walked in tonight was, "You've been crying."

Emily has two cousins close to her age - two months younger and four months younger.
I love those girls - all three of them - but when they're all together it's a trigger.
Both of Em's cousins are speaking in full sentences, and are very much aware of the world around them.
The other night at a pre-wedding celebration for my uncle (hooray my uncle got married!) I watched as my niece put her plate down on a table and then scooped guacamole onto that plate, piled it high with chips, and walked into the other room to eat.

My heart hurts at the very obvious differences between Emily and every other two year old I know.
My heart hurts that Em falls into the category of special needs.
And my heart hurts sometimes when I think about Em's future: will she ever really talk?  Will she ever catch up developmentally?  Will people look at her and judge her for what they see as different? Will her heart really hold out long enough to give her a future?

And then I feel guilty for feeling those things - because it makes me feel ungrateful.
And I'm not.
I'm not ungrateful.
It seems that on a regular basis I read of another little one who has lost their fight to the same health issues/chromosome deletion that Emily has.
I read of little ones who have it so much worse than Emily does - who have to fight so much harder.
I read of the ache of so many who just want to be a mom.

I'm a mom - and Emily is alive - and she's happy - and she's mostly healthy right now - and ...

...and in spite of it all I still hurt - and I wonder if I'm the only mom who is unable to be at complete peace with the challenges her sweet little baby came here with.

Somehow tonight, that note from Mrs. Mary Poppins to her driver felt like it was meant for me.

"You tell your daughter that she can be anyone she wants to be."

And perhaps the lesson to be learned - again and again is - your daughter will be exactly who God meant for her to be.  And that's enough.

Friday, December 27, 2013

My New Favorite Family Picture

I'm here ... and we're well ... and I'll write ...

... just as soon as I dig out from Christmas ...

Friday, December 6, 2013

Illness Abounds

It might not surprise you to know that Emily has been sick.
Really sick.
She's been sick for about one hundred years now, but just recently things got worse.

When she had her last heart surgery her cardiologist told us that even if she got sick, Emily shouldn't need oxygen.
Normal blood oxygen levels are between 90 and 100.
Emily's went down as low 77 the other night, and when they stayed at 77 we bundled her up and took her to the ER.

It was 1:30 in the morning and about 7 degrees outside.
Fun times.

We were there for a few hours while they did a chest x-ray and gave her oxygen and then they sent us home.

Early the next morning we got a call from the cardiologist's office.
"Looks like we need to see Emily," was the first thing the secretary said.
(The ER had sent them a report.)

For months now we've been treating for both bronchitis and asthma - over and over and over again.
And all along the way I've asked if it could be related to Em's heart but mostly I've been told no.

The cardiologist thinks otherwise and we will see him Monday afternoon.
A part of me really hopes there is something going on with Emily's heart, if only because it would give us an answer finally - and maybe a direction to go to finally get her feeling better.

It's needless to say that Jason and Emily and I are all exhausted.
Last night was the first night in weeks that Emily slept mostly through the night.
Bless that girl - she can't get sick without her tummy getting the worst of things, and she throws up pretty regularly - all over us and our bed.

The night of the delightful ER visit Em threw up and instead of changing the sheets I just scrubbed them and then put a towel down so that I could have something dry to sleep on.

"You don't want to change the sheets?" Jason asked.  I just smiled and said "What's the point - I think we'll be going to the ER within the hour."

So - there you go.

Life.  Gosh it's fun!