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.



Dear Kindergarten

Hello old friend, It’s been 3 years since we last met.  Three years ago you welcomed my daughter with open arms and promised to instill in her the love for learning. You did that.  You loved our girl and gave her incredible gifts of friendship, of knowledge, of laughter…a foundation to build on for a […]

Will You Love Me?

4Love is patient, love is kind. Love does not envy,  is not boastful, is not conceited,  5does not act improperly, is not selfish, is not provoked,  and does not keep a record of wrongs. 6Love finds no joy in unrighteousness but rejoices in the truth.  7It bears all things, believes all things, hopes all things, endures all things…. […]


What happens next?   That moment in time when you suddenly realize that you haven’t checked vitals, are surprised by the phone call reminding you of a doctor’s appointment… What happens when you are living your life by the social events on the calendar – from date nights, to birthday parties, to low key evenings […]

To my Kindergartner

To my Kindergartner, Tomorrow when you wake up, you’ll ask me, “How many more sleeps until school?” I will say, “No more sleeps!  Today is the big day!” You have been waiting for school to start all summer. You’re so excited to be a “big” kid. You will carry your backpack – it’s bigger than […]

“I don’t want Happy.”

Pharrell’s Top 40 hit has taken over our house. Iz loves singing it and dancing to the song. It is on repeat at our home along with every song from the “Frozen” soundtrack. About a week ago, I hear the familiar tune start playing in Iz’s room. Then, I hear little feet scamper to me. […]


There is a something that many parents with kids with special needs deal with that is not shared frequently. I see it every single day in the Heartland. But, I know that this dirty little secret is one that many special needs parents share. I’m ashamed to even share it with you….but for the sake […]

5 Minutes in a (Heart) Mom’s Head

I laughed so hard when I read this blog that I came across about what it is like to be inside a mom’s head for 5 minutes.   I sent it to my husband to show him my crazy is shared ’round the world by women who lovingly (and tirelessly) call themselves “Mom.”  He then […]

Pieces of me.

I had dinner with my friends last week. These ladies have seen me through some of the hardest moments of the past three years. I had a breakdown a few weeks ago that landed me in the hospital with a diagnosis of exhaustion, dehydration and an ulcer most likely caused by stress and as the […]

We are supposed to be in Italy.

Today is my 10 year wedding anniversary. A pretty big milestone these days. It is hard to believe that Craig and I have known each other for 18 years and been married 10 of those. I think about where our lives are now and I’m brought back to this little bit of writing. WELCOME TO […]

I just want to be Mommy.

“So, Ms Hounsel, let’s discuss what we are going to do for Evan.” Our specialist for Evan’s gut rattled off our plan.  I agreed to some and disagreed with others. We came to a happy medium of what was next for Evan in regards to his stomach issues and his lack of weight gain. I […]