That Voice

That voice. The one we all have. The one my friend whose post I “reblogged” wrote about yesterday,

I have been battling mine. Sometimes I win. Sometimes I don’t. But, I am actively working on increasing my stats.

Chronic illness is, well, chronic. It sticks around even when you’d like to toss it to the curb.

Yet I, as so many other parents, have found an inner strength that comes with managing your child’s chronic illness.

And somewhere after you have been battling for a bit, and your mother’s intuition is fully fine-tuned, and stronger than any fictitious “super power,” you realize it gets easier and easier to take that voice of self doubt and tell it to SHUT UP!

Just this last year alone, as I have adjusted to my new body parts, and my missing body parts, I have come to the determination that despite my gnarled mess if varicose veins- I CAN wear shorts, because – why not?

And I CAN talk to whomever I want about the Isagenix business I am working to grow, because I believe in the products, and they have changed my family for the better. So, why not?

And I CAN blog in intricate detail the stories of our battles with Cowden’s Syndrome, so that those in similar situations have a story to relate to- and others will help us raise awareness.

I am able to stifle that voice when I meet another new, clueless doctor. I am able to educate them, or fire them. Whichever is best. I am able to plow through obstacles wretchedly placed in our paths for the best care my girl deserves.

Yet, there are still times that voice, and all of its horrible, scary, evil “what ifs?” Whispers – no SHOUTS in my ear.

We are still in Disney. I am alone by the pool. I have been here for hours- not without a cocktail in hand. But I am separated from my family because my girl is exhausted.

It’s Florida. It’s August. It’s hot. And maybe it’s just that simple.

But we’ve done this before. This is our sixth time. And this time the stamina is struggling. Late mornings. Early nights. Droopy eyes. And I worry.

We give her the best, cleanest, purest food and vitamins we can find. She sees doctors all over- all the time.

And yet, “Mom I just don’t feel right.”

My heart sinks.

I brought her cookies tonight- a trip to Downtown Disney alone because she just “couldn’t.” The gratitude in her eyes worth every one of my extra steps.

There is no fever. Maybe her Dad is right. Maybe I worry too much.

But we have only seen one night show- unheard of for us. I am starting to wonder what will happen when school meets PT and swim practice!

Or, maybe I remember too much. Or maybe I know her too well.

Motherhood carries inherent risks- among them constant worry. So Cowden’s or not- I am confident I am not alone in my anxiety.

We want what’s best for them. We want to help them. They are our lives, our air, our breath.

I have got that voice in much better control than ever before. On this though, I am not alone in wondering if I will ever get it to SHUT UP!?

4 thoughts on “That Voice

  1. I had the pleasure of meeting your daughter on the bus from Saratoga Springs to Downtown Disney yesterday. She is truly a beautiful intelligent young lady. Because I travel with a service dog I get to talk to many people about many different issues. Your daughter and her strength and intelligence touched my heart. This little 10 year old girl is more concerned about getting the word out about this disease and helping others then she is about her own situation. She gave my wife a business card that led me to this site, and told her that she is trying to promote awareness about this disease. Im not sure how I can help but as soon as Im done typing this message Im going to send a message to Ellen DeGeneres and I hope others do also. I will continue to try to help spread the word about this amazing little girl and will pray for her recovery. God bless you, your family and your incredible daughter.

    1. Meghan spoke all evening about how enjoyable her conversation was with your wife. It is so often the little things that make the big differences. We don’t believe much in coincidence, rather that people are placed in our paths at the right time for the right reasons. Thank you for helping her share the story. Blessings to you and your wife (and that beautiful dog as well.)

      1. I cant tell you how many people Ive told about your remarkable daughter. I will continue to try to spread the word. I hope you guys had an awesome time at Disney and I also hope the magic followed you home.

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