parenting, special needs, CHD

Community

Can we talk about community for just a minute?

This week has been a little on the rocky side. Father’s Day didn’t go as planned. ALL the amazing fathers in my life missed out on Facebook shout outs because I was curled up on a cat blanket in the grass watching my toddler’s fever climb steadily higher. We moved indoors as she hit 103 and started in with the shakes. She was twitching and jerking so violently that she was looking at me with those wide deer-in-the-headlights eyes clearly questioning “WHAT IS HAPPENING TO MY BODY?!”

We ended up at the ER because I’m a better safe than sorry kind of mom. only a few short ( :/ ) hours later, we walked out again with a prescription for the dreaded antibiotic cocktail that should kill the pneumonia she has somehow acquired on the first week of SUMMER. The next morning dawns with a chorus of coughs and moans from all four of them and I decide it’s time to chat with their doc and see if they should all be checked out. Tuesday was CHEST X-RAYS FOR EVERYONE! Now, that’s not a quick process. We twiddled our thumbs about as long as a person can stand in the radiology waiting area when the tech calls us in with a “only the ones getting x-rays” to which I must respond “well, I’m not leaving a toddler with pneumonia in the waiting room by herself.”

It was really the only reply, right?

Every pair of eyes we have rolled many times through the process of covering all the bits for radiation and we have found ourselves back in the only room in our pediatricians office that can hold all of us while waiting for the diagnoses. I think they have secretly named this room after us, actually. I mean, they haven’t given us the red rotary phone that connects us directly to scheduling yet, but I know it’s the next step in this relationship. The doc taps on the door to announce her entrance to any stray child that may be lurking behind the door and cracks the door with that “everything is going to be FINE” smile on her face.
“No signs of pneumonia for the big ones” she says and I start to take that sigh of relief when I hear the “BUT” coming.

“BUT the radiologist did note that Zoe’s heart is enlarged. Due to her cardiac history I think it’s probably a good idea to get her in for an echo again”
DAMN.
The wheels are spinning and my head is nodding and I’m agreeing to all the “after care summary” information as fast as I can while throwing shoes at random children to put on because there is NO SPEED FAST ENOUGH to please a mother who wants answers about her child’s heart.

We whip round the corner back home, and I ply the children with food so that I can spend as long as it takes on the phone to pry answers out of someone. While waiting on hold with our cardiologist office I send out a quick message to my tribe to pray for my girls. When I’ve finally left all the messages with all the people I can I say my prayers and settle in for a long nights wait. The batteries get changed in our oxygen monitor, because looking at those numbers keeps me sane when every hitch of every persons breathing sends my planning mode into overdrive (yeah I said planning mode instead of panic mode but you know what I’m talking about…) Coughing fits break up the night into chunks of restlessness and motion. With constant reminders to myself that no one sent us to the hospital for the heart issue, and they sent us HOME from the hospital for the pneumonia so neither is likely life threatening (this evening) we make it through the night.

Wednesday breaks. I know the cardiologist is in the office on Wednesdays so I call first thing. The receptionist is kind enough to read his note to me: No early screening needed.
It’s not a lot but it’s what I’ve got so I’m working with it. I confirm with the receptionist that this means Zoe doesn’t need to come in before her regularly scheduled check up and proceed on to asking the follow up questions. Naturally she then asks “Would you like me to transfer you to a medical assistant?” YUP. That’s what I want.

I list out all my questions for the assistant and she happily tells me she’ll forward them to the Dr and call me back as soon as she can. My mind is beginning to slow with the release of power in the situation, and the memory of how thoroughly this cardiologist investigated every nook and cranny of this baby girls heart from her bedside as she struggled for life in those first days.
We resign ourselves to a lazy day, and the LEGO takes over the floor of the house.

Then, there’s a knock at the door.

A beautiful smiling face is standing there with a sunflower. A bright yellow, HAPPY sunflower. And she asks for help unloading her car. A car full of groceries for my family. Groceries that my family and all our crazy diets can actually eat. The counter is full of bags and with a hug and a smile she’s on her way again.

So, this morning, Thursday, we are all awoken early by the house shaking thunder brought in by a storm cell from the mountain. The girls are scared and the boys are cranky from being up before 7. I pull out the goodies tucked in with the groceries from last night. Two llamas. One for each girl to cuddle. A pack of markers with a fancy coloring book, and a word game we can all play. Low and behold this picture takes form… smiling children sprawled across the living room, fed and entertained. A mom able to take a deep breath as she snuggles her babies through the storm because someone stepped in and just said yes. YES I will do this thing for you because I can and I need nothing in return. That’s community.
That’s what heals the world you know.

By Noelle Bonn

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1 comment

  • Maria – @MePlusUEquals2

    December 14, 2018 at 4:18 PM

    What a beautiful story! Hope all is well with the littles and that you’ve found a little bit of peace since this post. Hugs mama!

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