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’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 […]

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