This Strange Feeling That Never Goes Away

It's taken me days to write this post, not necessarily because I haven't had time to finish it, but because my feelings have been raw and my mind restless.

WRDDA couple of days ago was World Rare Disease Day (WRDD). Rare diseases touch so many lives. And these diseases seem to be multiplying at an ever increasing rate. I haven't heard of most of them, nor can I attempt to pronounce their names.

I'd never even heard of PLEVA (Pityriasis Lichenoides et Varioliformis Acuta) until my son woke up one day, suddenly in its grasp. And while WRDD is meant to inspire and raise awareness for so many of this Earth's strongest warriors, it also left me feeling somewhat melancholy. It left me thinking for too long about the disease that has taken up residence in my sweet son. The fact that there is even a need for such a day sprinkles salt into an already gaping wound.

Prior to the 28th I'd already been obsessively thinking about Tanner's disease and his future more than I would care to admit.

Thanks to a dear friend of mine that connected us, I am suddenly in contact with another mother of a child with PLEVA. We chit chatted via social media about this horrible disease. For the first time since Tanner's diagnosis I felt like we weren't silently fighting this battle alone.  We were suddenly part of a team, however small it may be, fighting this beast together. It was uplifting.

But it was also sobering. This little girl has been fighting for a year longer than Tanner and she's right in the thick of it.  Tanner's in the middle of a slight reprieve and it's been easier to ignore for a little while. This little girl even sees the same doctor at Seattle Children's. The scariest part is that her current reality is a look into our most likely future.

The rosy picture painted by our doctor was most likely wishful thinking. In the event that Tanner never has another full blown flare, that might be how our future will look. She was probably being hopeful and extending that hope to us.

When I checked him the other day he had 11 spots in various stages. If we get to 20 active spots he starts chemotherapy. It's the only time in my life I've ever been truly frightened by numbers.

This sweet, little girl has been on chemotherapy for 17 months already. And she was just barely able to successfully lower the dose for the first time. And yes, it's a lower dose than what a cancer patient would be administered so she still has all of her hair, but she gets really sick and exhausted and had to be pulled from school. She receives monthly cancer screenings because the risk of mutation is higher. Listening to this sweet mother explain her daughter's situation to me opened up every fear that use to overcome my thoughts. I felt my hope waning. Realistically, this will be our life.  This will be Tanner's life.

I am not without hope. I have hope in the Savior of mankind. I trust that all things work for our ultimate good and that things are as they should be. But my humanity and my motherhood have no problem screaming at the top of their lungs that this whole situation is a far cry from fair. It's humbling to submit my will to God when this avenue is so contrary to everything that I want for Tanner. I am certain that my Father in Heaven and I have the same end result in mind when it comes to our son and I am even more certain that He knows better than I the best route to get us there. But in my weakness I am incredibly afraid of the path He's chosen.

On days like World Rare Disease Day, days where I don't want to close my eyes for fear of my own thoughts . . . on those days I humbly have to acknowledge that there are powers in force far beyond my capacity to control. I humbly declare that God loves my son more than I do and He is fully aware of our needs during this life's journey. He is conscious of that feeling of fear that lingers just underneath the surface of my every day life and never goes away. He is keenly aware of all of us and in that I find peace.

6 thoughts on “This Strange Feeling That Never Goes Away

  1. Denny Waller

    We too have a family member with a rare disease. Son Dan's wife is 33, with incurable VHL disease. All we can do is pray and I'll be including Tanner in mine. May God bless him.

  2. Alice M

    Beautifully written. Thank you for sharing! Prayers and love to you, Tanner, and your entire family.

  3. Sarah

    Someone gave a talk in church the other day about when his young, healthy son had multiple heart attacks one day, and then a few months later another young, healthy son died in a plane crash. His premise was how when he was young and going through anesthesia school through the Army, he got called into active duty and many of his colleagues said they didn't sign up for this. They were glad to get the paycheck every month and have their tuition paid for, but when it came to the hard stuff, they weren't on board. If course he related this to our Earthly experiences and when we're in the middle of the hard stuff, we, too, might think, "I didn't sign up for this," but of course, we did. And we did it willingly and enthusiastically.

    It's hard to remember that in the middle of it all, especially when you're looking at the long term and the likelihood that it is going to get harder, but don't give up hope. I know that our experiences here do strengthen and deepen our Heavenly relationships more than anything else can.

    Love you, friend.

  4. Our hearts go out to you and your family. As you may know, James has a daughter with severe heart defects and she had to have surgery when she was seven months old. For now, things are great, but her fight is not over either. That's as close as we've had to come to anything really serious in our family. But we have friends in our Ward with a 14 yr old son who is losing his battle with cancer. He has a cancer so rare that only SEVEN other people in the world have ever been diagnosed with it. How's that for feeling particularly picked on?? He's fought hard for three years now, but they are running out of options. Life is hard and that's not just a saying. All you can do is take it one day at a time and when that's too hard, go for one hour at a time. Prayer changes things, and it sounds like a whole lot of people pray for you and Tanner. We wish you all the best, love, the Griffiths

  5. Marissa zocco

    My 7 year old daughter has pleva it was so fast and furious covered her head to toe she was tired in pain and itching she itched so much she got a coinfection of staph. I had her in the sun all summer and she cleared up better than anyone expected in less than 3 months. She does have scars but I think after another summer they will lighten hopefully. She still has various new spots on her body but she seems less effected than I am with them. I hope to god it never comes back like it was. God bless your son and stay positive ?

    1. Post author

      It's the worst! The sun has been the most effective for my son too! He's been totally clear this last month of summer, but I noticed a few new spots the other day. Hoping he survives the winter without a horrible flare. He has enough scars already.;) And his doctors want to do chemo if he flares again. Trying to avoid that at all costs! God bless you and your daughter!


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