Thursday, July 19, 2012

A Good Day at the Cardiologist


I've got to teach my little lady that two for one deals are not always her best option.
Especially when it comes to heart defects.

There is something so sobering about talking to a cardiologist...even when the news is good.
They put into words the things you would choose to forget about...to put away in the very farthest corner of your mind.

Emily was not amused.  And yes, I might have coordinated her G-tube pad to her outfit.


"Emily's combination of heart defects is rare," Dr. H told me.
"But I'm sure you already know that."
I laughed and said, "my heart mom group is both a blessing and a curse."
He agreed.

"Dr. H, the parents I know who have kids with Em's same diagnosis have all been told 'there is nothing more we can do.'" 
"Are we facing the same future?"

Dr. H took a minute to answer and gave me the answer he must have given other parents a thousand times.

"Every child is different.  We can't know what Emily's future will bring, but we know that for right now she's doing well.  Her heart sounds better than I thought it would, she looks great, and I'm really happy with what I see.  Let's focus on that.  And unless something drastic happens between now and then, I don't need to see Emily for another six months."

Not too long ago I was talking to my mom.  I was having a bad day and I was crying.  
"Mom, I hate not knowing how long we will have Emily with us.  I hate that I even have to ask that question."
My mom's response, which she's given to me before, was "Noelle, there are no guarantees for any of us.  None of us know how long we will be here, or how long our kids will be here."
"Yes, but there is something about ignorance that makes you less likely to worry," I told her.  "We have never had that ignorance."

In the eternal perspective, if Em eats or doesn't eat it is of little consequence.
If she walks, or talks, or succeeds in school, or ... or anything ... it's all the same...little consequence compared to the eternal perspective.
That's what I remind myself every single day.

She's alive.
She's healthy (except for the double ear infection she was diagnosed with yesterday).
She's doing well.
She's developing as she should be.

And most importantly, she's happy.
And she is so loved.

Jason and I have made it our mission in life to live in the present.
We try to make the most of every day we have with Emily...to fill every day with as much happiness and love that we can. (And that's why we're throwing a huge pink elephant birthday party for our girl next weekend...even if I am too sick to plan it.)

Emily deserves that...and so do we.





6 comments:

Jen said...

Sweet baby girl. I'm elated to hear that she is doing so well.

Your mom is very wise, but I can't imagine living every day worried about my baby.

Can't wait to see pictures of her big pink elephant party! You all deserve to celebrate this milestone.

Forgive my ignorance, but would Emily ever be a candidate for a heart transplant? Sorry if that's a stupid question...

Have a ball at that little girls party. She is blessed to have you and you are blessed to have her!

Mom on a Line said...

I love the g-tube pad coordinated with the outfit. Totally rockin!

Also, your mom sounds a lot like my mom. I think I've heard the exact same words out of her mouth a dozen plus times. And I may have given the same response you gave.

I'm very glad to hear that the doctor is happy with Emily's heart. All we can ask is one day at a time and these are the really good days.

I hope you feel better and that the pink elephant party is so amazingly awesome. You all deserve a great celebration!

Debbie Gardner said...

This post, while optimistic makes me so sad. I had no idea about the eventuality of it all. I thought she was well and would hopefully stay that way. So sorry to hear that that may not be the case. Love you cousin.

Elizabeth said...

Noelle, you are so lucky to have Jason. So, so lucky. He's invested. He's on your team. He has the same goals and beliefs as you. Lucky isn't the right word. Blessed. That's the right word.

Your little Emily is so sweet. I'm so glad she's doing well. It is my prayer that she will continue to do well, better than the doctors expect for a very, very long time.

I'll feel very silly; I'm not good in large social situations with lots of people I don't know; but maybe I'll pop in on the pink elephant birthday party to give her a squeeze. I saw the invitation and know the place, but just let me know the time again, will you? Maybe I'll pick up a few annuals while I'm there. Do you still have some left? And are they on clearance yet?

xo -E

Daniel and Elise said...

I meant to comment on the post about Emily's birthday party that I would love an invitation! My email is elise.zvirzdin@gmail.com
Thanks! :)

Heather said...

I haven't forgotten you. I'm glad to gear Emily is doing well. I really hope you don't have to see the doctor again for a while.