A Ticking Time Bomb

There’s really no good way to explain the feelings surrounding today. Maybe something like your heart being squished and blown back up. Trying to grasp at air. A hard painful brick sitting right on your chest as you painfully fight to get it off.

Vivid memories of your child helpless in a hospital bed. Sending him with a surgeon for a way to close to the last time, second time. Knowing the risks of surgeries so close together. Unsure of what would come back to you. If he’d come back to you. Unsure of the outcomes. Just unsure. Leaving every bit of trust in God because there’s no way you could go this alone.

Open Heart Surgery Two, a painful, trying stay. A stay that ended with a piece of metal where a heart valve is suppose to be. A clicking sound coming from an infant’s chest. My infant’s chest.

And at the time a promise of two to seven years before another valve. A valve that would end up with a rare external leak and cause a third surgery. But at the time two to seven years felt good. Well today as we have eliminated those first two years, it feels terrifying. Two years went so quickly in the chaos that we have grown accustomed to. How quickly will the next five or less go?

Two years left in the blink of an eye. Leaving us at zero. Zero to five. A ticking time bomb. Not that at any point in time a heart warrior can’t change the game plan. We know Charlie did with that third go. But to feel zero. To say zero. There’s not even a day between now and zero. It’s just ZERO.

Every day is closer and closer to that click needing to be replaced. Every next appointment could be the bomb dropping appointment.

That next surgery could go fantastic. Or it could go like the first three and be painful and long. Bringing more issues for Charlie. Breaking apart our family. Throwing our current batch of chaos into a hurricane.

The location of his valve puts him at risk of needing a pacemaker every time it’s touched. We already know this is a viable possibility in his future. Just another wrench to throw in the plan. His heart tissue is scarred. His fibers were weak before. What if they haven’t improved? What if a new valve won’t attach well? What if… The what ifs of a future surgery are lingering thoughts, always. And today those thoughts are intensified. Zero.

A day that brings feelings I try so hard to guard myself from. I block them with knowledge and sarcasm. I’ve learned this about myself. They hurt, so I stop them. But I can’t. Today, I just can’t.

Zero. Zero. Zero.

A ticking time bomb.

“But about that day or hour no one knows, not even the angels in heaven, nor the Son, but only the Father.” Mark 13:32

Some Traditions are Made to be Broken

“Hurt my butt.” “Oh, I tooted.” “Mommy f***, Daddy f***, owwww.” “There’s Jesus!”

All of these are phrases you would have heard Charlie throwing out there had you been in our Thanksgiving church service tonight. In his defense he was trying to say “fox”, but it’s just a word he can’t get out yet, and it’s a wolf book he was talking about. (Insert hand palm here.)

He ran the pew back and forth. He used a Kleenex to clean off every Bible and Hymnal. He cleaned the “table” (pew). He even cleaned the nice lady at the end of the pews purse and shoe. (Again hand palm.)

The nice lady continuously smiled through out the service and engaged him as he offered her pretend food that he pretended to grab from her purse. (You guys this kid!)

I sat laughing hysterically like an immature child. I’d frequently make eye contact with my cousin four pews ahead of us who could hear Charlie and not stop laughing. I felt the thoughts of those around me burning into me. “Great parenting there.” “Make him be quiet.” Are things I imagined them saying. And the eyes of my former principle staring at me. The judgements I imagined them having for us. (And maybe, truly they weren’t. But the mind gets to you quickly.)

In my head I was replying to them all, “I’m not even sorry. Not one little bit. I’m just so damn happy he’s in this pew making the loudest noises and dropping one liners like nobodies business. Two years ago he was in a hospital bed fighting for his life, as he was in heart failure and his lungs filled with blood. I almost lost him and he was intubated for his first Thanksgiving. And last year at this time we were in an ambulance on our way to the hospital again, because he was lethargic. And again, we spent Thanksgiving in the hospital. So forgive me as I allow my child to yell in the pew, run back and forth, and feed people imaginary food he stole from them. Because you know what, God clearly has a fantastic sense of humor. And I wouldn’t trade this highly embarrassing church service for 5 million dollars right now.”

I may not have gotten much directly from that church service. I was completely distracted by my highly amusing child. But part of the Thanksgiving prayer did resonate with me, “For the ability to be thankful for the hardship in our lives: We ask strength that only you can give, O Holy Spirit.”

Two years ago at 2 a.m., as many of you know, I was in a room crying as I waited to find out if my child was going to survive the night. Last year I was in an ambulance as I typed out my words and held my limp baby. Both of these days occurring from the 22 to 23 of November. That’s just our day. So today I waited in anxiety. I waited for that moment. When he got a cough on Sunday night I had instant panic. The thoughts of going to the hospital for a third year in a row consumed me. The tightness in my chest grew. So as I approach 2 a.m. on the 23rd and I’m no where near anything medically related, I am Thankful.

Thanksgiving happens to fall directly on our dates this year, ironic. And while we love our hospital family dearly. I am thankful that some traditions are made to be broken.

Happy Thanksgiving from #iwearredforcharlie.

And now, it’s 2 a.m.