Month: January 2018

Primary Immunodeficiency

Published on by EmilyMaxwellMcLemoreLeave a comment

Saturday afternoon as I sorted the mail, I wasn’t expecting a sucker punch. But I got one. There in a seemingly innocent receipt from one of our specialists was a new diagnosis for my daughter. No explanation. No preparation. Nothing. It was just listed there between Unspecified asthma and Other allergic rhinitis like a harmless friend.

But its not.  In fact, nine vials of blood were sent to the Medical College of Wisconsin (the only center in the country to run the incredibly specialized tests that she had to have) last spring to see if maybe we might have some answers. And we were told no. That the tests were inconclusive and that we should just stay our course and not change treatment.

And then bam. There in black and white and insurance codes was D83.0…  that’s Common Variable immunodeficiency with predominant abnormalities of B-cell numbers and function .. for those untrained in insurance codes.

IMG_1948

Guys, that’s a primary immunodeficiency and we are smack dab in the middle of a horrible flu season and my child is getting no preventative or precautionary medical treatment.

I am RUNNING SCARED!

You would think by now I’d be use to this kind of crap.

I’ve been a parent of a sick child with rare diseases for eighteen years.

But I’m still scared.

Tonight as we face the week ahead, all I can do is pray for my sweet resilient daughter and pray for her protection. Her incredibly complex medical picture makes easy answers and typical protocols not work for her.

So please you guys out there.. if you are feeling achy, tired and run down, do me a favor and stay far, far away from my girl. I desperately want to keep her home the next couple of weeks, but that isn’t possible. We joked tonight, as we have many, many times over the years about needing to get her a bubble.

Tonight my laugh was brittle.

Definitive Choices

Published on by EmilyMaxwellMcLemoreLeave a comment

IMG_0456How often do we choose to live in the land of the wishy washy choice so that we don’t have to go all in on something? I know that I do it. And I’m an “all in” personality.. Big time! But there are areas of my life that I need to be reminded to “go big or go home.”

Over the last two days, I had the privilege to work with a number of  high school one act play casts from the surrounding area as they prepare for competition. During this time, I found myself repeating quite a few concepts over and over to each cast. One of those was to make concrete choices and get rid of the wishy washy decisions.  It is early in their production cycle, so many of the notes I gave were quite useable (I hope!) as they have time to truly process what I said and then choose to use my thoughts or ignore them.

This got me thinking about decision making it in terms of real life.  I personally love making a decision and then going headfirst into a new adventure. I know that scares some. It invigorates me! My problem typically isn’t starting, it’s finishing.  Nevertheless, there are a number of areas in my life where I need to reevaluate my choices.

There have been times that I have chosen to go headfirst down a wishy washy path purposefully forsaking the definitive choice. Sadly, I see that and realize that the window for the definitive choice has passed me by in some areas. Knowing this, I desperately want to stop, and take the advice of business man, Brian Buffini:

“While there is a time to think about a solution, reflect on it and gather feedback from others, there comes a time when you have to forget about input from other people. Be confident in your choices, and stick by them.”