Everyday Fire Drill

Recently, SGM and I had a conversation more than six years in the making now.  So hard to believe.  We talked for a long time revisiting the path RM has brought us along since her grand arrival.

It was amazing to listen to daddy talk about the intricate details of our every day in those first years.  Sleep deprivation ranks at the top of the list of inconveniences.  What astounded me most throughout this conversation was that though I remember everything, I cannot recall much of the details on my own.  SGM talked about the “fire drill” we had mastered at 2am.  How eventually, we learned the sequencing of tiny gurgling sounds that preceded the projectile vomit.  If we were quick enough on our feet, clamping feed lines and haranguing huge plastic syringes, we could “vent” her belly of the gas pressure before the formula erupted out of her nose and mouth like a sour-smelling Mount Etna.  As he ran me through the drill, I realized I had completely blocked out that joy.

Good times.

Then there was the open-heart surgery at four months old.  Maybe because of the relief to have something that could be fixed, that seemed a good day.  I remember every detail of that clearly.  SGM and I had coffees and magazines and the whole private waiting room to ourselves.  Private waiting room.  You know, because your kid is having “real” surgery this time.  Why should you have to sit in the “regular” waiting room when your infant’s chest is being cracked open? Right?

The whole intensity of the situation seemed lost on me.  I just had faith that either way this was the journey and the results were predetermined.  No matter the outcome, we were blessed by this child for however long God lent her to us.  Right?  Because this was our everyday fire drill.

The PICU was new to us also.  We were in the Big Leagues apparently.  But again, the concept was lost on me that this meant I was to be more frazzled somehow.  We had already brought her through several other surgeries and procedures.  We had already sat in the “regular” recovery room with her enough to be familiar with the entire rotating staff there.  This was our everday fire drill.

I remember the chest drain sticking out of her, filled with blood, pouring into a bag at the foot of the bed.  She was still on a ventilator with wires monitoring every last thing imaginable.  But again, for some reason this was all ok.  We stayed with her for a little while, met the staff that would be watching over her, and we went home to our other two kids.  This was our everday fire drill.

What is so strange to me looking back now, is how overwhelmingly upset I was by comparison when RM came back to her room from her first surgery with her feeding tube.  The shock of seeing a hole cut into your child’s belly and a long, ugly tube coming out was too much for me.  How quickly I grew to love that tube for saving her life so many times.  This was our everday fire drill.

The journey has been long, often exhausting, and has left me on medication for anxiety disorder.  There are still so many unknowns about her future, both medically and developmentally.  This is our everyday fire drill.  But through it all, whether I remember every detail or just a snapshot of the tougher times, my baby girl has made this life brighter, more joyous, and more hopeful.

From StimCity’s facebook Wednesday: “Tonight I witnessed my baby girl in the awe of discovery as every curious expression crossed her beautiful face – the raised eyebrows, the wide eyes, the pure joy of experiencing something new and truly being in the moment – she learned the feeling of floating in water while taking a tubby. No, not earth shattering. Just so very cool to see her making such a connection.”

Oh, Baby, you bring me such joy.  Our everyday fire drill suits me just fine.

RM at 3yo smiling while recovering from Swine Flu. Sometimes, you just have to make the best of it – look where her feeding tube comes out of her jammies!

About Rachel Kenyon

Rachel Kenyon is an Aspie, Advocate and single mom of two beautiful babes - The Boy (11) and RM (8). The Boy is a Legomaniac and RM is a kick-ass diva with Autism and 4q Deletion Syndrome. View all posts by Rachel Kenyon

7 responses to “Everyday Fire Drill

  • Niksmom

    Hugs, my friend. Seems we’ve shared more of this journey than just the autism which brought you into my life. And, for the record, yeas, it was a big thing…every day, every step, every success…you and I both know how big it is. Celebrating with you. Love you. xo

  • Neil N

    Wow. I’ve had some fire drills, but those are Fire. Drills. Or even FIRE DRILLS. Your courage, honesty and attitude is an inspiration to so many. Best wishes to all of you.

  • therocchronicles

    Those are serious fire drills mama. xoxo

  • jess

    Grace under fire. You, her, SGM, all of you. Truly Grace under fire.

    Love you all.

    • Rachel Kenyon

      One of the many great blessings throughout the journey of RM has been all of the love and support from amazing people we’ve met because of her.

      Love you all and thank you for sharing this road with us.
      xo

  • Whacamole Mom

    I love this – “everyday fire drill.” Yes, this has become the new normal for us, as well. My son underwent brain surgery within hours of his birth (and countless times since). As I recovered from a c-section, he was in another hospital recovering from his procedure. It’s all foggy…but at the same time, the pain/joy remains perfectly vivid. Great post.

    It’s hard keeping up with all the blogs I love, but I have spent some time here this morning and appreciate you! I’ll definitely be back soon.

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