It’s time

It’s been years since my hands touched the keyboard and allowed my heart to be displayed for all to read.

But, this morning, I opened up Facebook like normal, and read some devastating news. And I realized..it’s time….its time to resurrect the place I find solace and that’s here where my fingers can tell what’s in my soul.

Another heart mom and Heterotaxy mom (the syndrome Evan has), had to do CPR on her 11 year old, daughter, Alexandra, and she was rushed to the hospital where they were able to get a heartbeat.  But, all signs point to the worst, and her mother has decided to sign a DNR.  Yet, if she doesn’t wake up on her own, they will remove support and let her go.

Is this where we are at…I get to look forward to 11 years with my boy?  How can this be?  One moment this little girl was laughing and joking and being a kid and the next…heartbreak.

I meet people daily who are just learning about our story.  They see my boy and they can’t quite understand why I worry so much.

Because daily…

In the morning, I wait to hear footsteps come down the stairs and and am thankful that he woke up.

I hold my breath in nervous anticipation every time I walk into his room

I freeze when my phone rings in fear that it’s the school or the hospital telling me something is wrong.

I inspect his coloring and wonder if his heart is still beating strong.

I dissect every “I’m not hungry…I feel funny…I’m tired…” and wonder…is this it?

People always joke with me and make comments about all the places we go.  All the vacations we take…all the things I do to make my kid’s life as magical as possible.

I do these things because someday I may not be able to.

I look at my boy and know that there is a good chance I will outlive him.  While some of you plan for college…I just want to make it past our next doctor’s appointment.

We live like tomorrow isn’t promised because in my world….it truly isn’t.

I envision a long life for Evan and will it with all that I am. My prayers are just as fervent today as they were 7 years ago when we first started this journey.

You just may not see it because I’m not sharing that part of me as outwardly anymore.  I carry the burden of my fear of the unknown and it weakens me.  But, I have a boy who knows nothing but the life we have given him.  So, I soldier on.  I try to fill his days and give him memories of a lifetime because I don’t know if he has a lifetime.

How far he has come…I don’t take that for granted nor do I diminish all he has surpassed.  But, as a mother, I am broken knowing there is still so much he has to fight.

 

 

It’s written.

It’s been a while since I’ve blogged. Life has changed and stayed the same all at once. If you followed Evan’s story on Facebook – you know that he had a successful surgery followed by a very difficult recovery. There were moments during recovery that I wasn’t sure. I wasn’t sure what would happen. I […]

Open your eyes.

Evan, Last night I couldn’t sleep in our hotel room. I picked you up out of your crib and made a pillow a wall on my bed. I got your blankies and put them all round your head just like you like it. I lay with  you and watched you sleep for hours. I don’t […]

A picture is worth a thousand prayers.

I have sat down at this computer many times in the past few days to give my list of prayer requests.  I couldn’t figure out an adequate way to convey my heart to you. My desperate heart. My pleading heart. My mother’s heart. And as I was clearing out my camera, I realized…you need to […]

Dear wife,

It’s Valentine’s Day. Craig and I don’t celebrate this holiday. We used to…our first one was a disaster.  He didn’t really understand that romance was not found in a little Mexican restaurant that shared the same parking lot as the Super Walmart.  (Anyone remember Floresitas?) So, we decided to give up the holiday. But, my […]

Don’t let it take anymore.

Yesterday was a difficult day in the Heartland. Many hearts were broken as we lost one of “our boys” to CHD. The thing about being in this world of broken hearts is that you form a bond with other mother and parents going through similar journeys. So, when one of the tiny fighters loses his […]

The only question that matters.

I had many of you reply to my post about Evan’s heart and the post with follow up questions concerning Evan’s surgery. Many of you were pretty surprised and “impressed” how much I knew. Truth of the matter? I know too much. I can ask the best heart surgeon in the world, the best cardiologists […]

The questions.

I had an overwhelming response to yesterday’s post. It makes me joyful to hear how many are joining us in praying for Evan.  And I am glad that many are “overwhelmed” by his condition. It should be overwhelming. And I think that the severity of Evan’s heart is not one to be taken lightly.  It […]

Evan 101.

I’ve been asked many times what exactly is “wrong” with Evan’s heart. His defects are diverse, complicated, rare. Understanding his defects in a quick 5 minute conversation is really impossible. It took me a while to learn his heart.  I had to learn what normal looked like in order to learn all of Evan’s “special.” […]

February – Apples and Oranges.

***Blog Repost from February 2014*** Apples and oranges. People say all the time when you are comparing things that are so different that you “can’t compare apples to oranges.” And that is supposed to make the argument just. February is Heart Month. Congenital Heart Disease Awareness month. The month where you may see hearts about […]

Response to Amy Glass

My response to an article that made my blood boil and heart sad. http://thoughtcatalog.com/amy-glass/2014/01/i-look-down-on-young-women-with-husbands-and-kids-and-im-not-sorry/ Are you by any chance related to George Glass. You know..the one from “The Brady Bunch?” Because, I didn’t think people like you existed in this world…much like the elusive George Glass. I’m naive though. And dumb.  I’m just  stay at […]