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.

 

 

The waiting place.

Now that Christmas over. The New Year is over 3 weeks old. And Evan’s Dora and Diego failed Pinterest party attempt is done… I have nothing to distract me from the wait. The waiting place. The place we all hate to be in in the Heartland. The place where our mind travels to the far […]

Blessed to be 2 today!

I’m up early today, buddy. Daddy left for work already – it is just a little after 5am. I’m listening to your breathing through the baby monitor and am anxiously waiting to hear your morning babble of “Mama,” “milk,” “football,” and “uh ohs,” that you do every morning as your welcome a new day. What […]

Choice.

There’s something about having choices that makes us feel empowered. It’s about knowing that you have a say in the decision. It’s also about taking responsibility for the choice you make. The most difficult part of having a child with a heart defect is that the choices we make for him/her now will effect them […]

Happy New (old) Year

I’m reading lots of blogs and articles about how to go into the New Year. Leave behind the past. Move forward. Let go. But, I just can’t. I can’t and don’t want to let go of this past year and the memories I’ve made. It has been a dynamite year. It has been a difficult […]

Overwhelmed.

The stockings were empty, the gifts are unwrapped, Christmas cinnamon rolls were eaten…the toy fights had begun. It’s Christmas morning. I haven’t posted in a while. We had our big trip to Boston and then suddenly the holiday has been in full swing. Gifts had to made, cookies had to be baked (and eaten), parties […]

Thanksgiving 2013

I’m not sure what to be thankful for this Thanksgiving. If you read my last post, we shared a part of  journey with Evan that we are getting ready to take. We are set to travel to Boston to get another opinion on his special heart. But, in the midst of this storm…another perfect storm […]

After the turkey.

It’s 6:30 AM and the sound of “Mama” from my best boy’s mouth is coming from his baby monitor. I get up, get a sippy cup of milk ready, fill syringes for medicine, and pour myself a big cup of coffee for the day. I walk into his room – dimly lit with the hum […]

Hats.

The hardest part about this journey is having to be so many things all at once for Evan.  All the hats that sit atop my head. Mother. Advocate. Cheerleader. Therapist. Nurse. Friend. I’m stuck in a rut where I need out quickly. With the fall season arriving in Texas, the cooler weather has brought our […]

My Tatay

It’s a walk I’ve walked before.  Halls that smell of sickness and fear. Head hung low. Eyes bloodshot from tears. Glances of sympathy from passersby. But this time, I didn’t have hope deep seeded in my soul. After a long fight and a blessed life, my grandfather – my Tatay – is home.  To the […]

Here we go again. And prayer requests.

We’ve had a summer to remember. Trips to the beach, water parks. Lazy days at home or friend’s houses playing and laughing. Ice cream and cook outs. Playgrounds and slides. All the things a summer should be about. Enter 3 months of no doctors visits, no therapy, nothing resembling the life we had only known […]