Samsmom: Life, Joy, Loss and Loving your Mitochondria

Very Superstitious

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Today is my day to post for Hopeful Parents. You can read it here or check me out there!

“How is Samantha?”

I never answer with ‘she is good’ or ‘she is sick’, I always preface my response with ‘today she is good’, ‘we’re having a rough time of it today’.

Because our life changes like the direction of the wind, what is comfortable one day is painful the next. A protocol that works like a charm one week just might not work once we hit Monday.

We have no control.

This variable lifestyle has made me a tad nutty.

And a bit superstitious.

I knock on wood. Seriously, if something is going well for Samantha I will say, “Well we have seizure control today, knock on wood.”

If wood is not available to me from where I am, I will stop the conversation, I will get up, find a door, or a cabinet, any piece of wood and knock on it. If I can’t get to wood, because I’m holding Samantha or caring for her, I will tell the person I’m conversing with to knock on wood.

And I’m serious….knock on wood.

When Samantha was in PICU, a friend dropped off her son’s lucky blanket that he had in the PICU. Another friend brought in a stuffed monster, because her son has monsters for good luck. We have crosses, angels, messages, stuffed animals, prayers, amulets, charms and lots of wood knocking.

We live in a world that tries to control so much. We know the weather five days in advance. We flip a switch and we have light, heat, cool air, water….

But when it comes to our children and their illnesses, we really don’t have a whole lot of control. Their little bodies are calling the shots.

So, like our ancestors, who didn’t have 24/7 radar weather, who looked to the horizon and asked I wonder what today will hold? Will it be calm? Will there be a storm? Will my crops survive? Perhaps we need a rain dance. We too approach each day looking to the horizon, wondering if we need to prepare for the next storm. Wondering what amount of knocking on wood, lucky blankets and monsters will help our precious little Peanuts make it through another day or at least make us feel better, feel as though we have some tiny element of control.

And yes, I have made up own anti-seizure dance, while of course, tapping on some poor piece of maple.

What is your superstitious ‘thing’? What do you do for an element of control?

5 responses to “Very Superstitious”

  1. Maria Hopfgarten Avatar
    Maria Hopfgarten

    What do you do when you were superstitious before your medically fragile child?!! I am so bad in that department – I knock on wood, spit when I see a cat (not just passing the street, any cat!), never put keys on the table – you name it! Anything that can possibly work! Hope you guys are having a great day TODAY! Jacob is just out for a walk with his nurse, and Sarah and I are heading to the park with friends!

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  2. Deana Avatar
    Deana

    I wouldn't say I am superstitious…I have strong beliefs that everything happens for a reason. That being said, I can't feel too out of control, knowing that in the grand scheme of things, it all works out as it should. Even when that isn't what I had expected or wanted. Now, that doesn't mean that I don't skip over the cracks on the sidewalk….because the last thing I need to do is break my mama's back! I hope Samantha's today is a good one! And yours too! We will see you Sunday, right?

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  3. Deana Avatar
    Deana

    Okay…I've thought about it some more. And I guess I am a little superstitious. I guess that's what you call it. I don't believe that because I bring Max's monsters to the hospital, or carry his fortune cookie papers from when I was pregnant with him around in my bag, or the healing Jasper rock from our veterinarian will actually do anything to make him better, or change the circumstances. I guess I just have those as reminders that we can try to make the best of the circumstances life has given us. The monsters bring Max comfort, and knowing they have grown up with him, in the hospital, brings me comfort. And the fortune cookie fortunes remind me of the high hopes I had for him before he was born, and remind me to put that same energy towards him just as he is. And the healing Jasper rock reminds me that there are so many people in the world who have cared enough to offer a prayer, or good thought, or positive energy to our boy. And it makes me feel stronger for knowing that.

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  4. HeatherS Avatar
    HeatherS

    I never heard of spitting when you see a cat! Love it! Deana, I love the monster Max gave Samantha. 'Max' now sits in Samantha's bed. And it felt special to cover her up with Jacob's 'good luck' blanket. I don't know if they will 'fix' anything but it makes me feel better, at peace with the world that so many people put so many good thoughts into our kids. My knocking on wood thing however is a bit out of control but I can't stop…knock, knock, knock…See you both on Sunday 🙂

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  5. Amanda Avatar
    Amanda

    I may be the pessimist! At this point I only allow myself to believe that my ATTITUDE is the one and probably only thing that I've truly got control of. Even Aliza doesn't listen to what I have to say…

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Hello,

I’m Heather

Welcome to Samsmom and over 15 years of stories about love, loss, grief and the process of moving forward. It’s not always pretty here, but it’s honest. I’m a writer, a fund raiser, rare disease advocate, Mom of two Littles who are no longer here, Wife of Hubs, Aunt to the Phews, daughter, friend and unapologetically me.

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