Battles against terminal illness, anxiety, and life!


I tapped the screen on my phone as if hitting the screen with a little more gusto would magically make it spring into action. Much to my dismay, it simply fluttered and just might have sighed. I held down the power button and the phone chimed as if saying, “Thank you for this forced break!” That was my brain last night. After listening to my sweet boy tell me he loved me to the moon and back one million times, I just couldn’t sleep. Every now and then my brain decides to reboot. It takes that moment to update, process, and get back up and running.

A process. Absorbing the changes that A-T brings into your life, how it affects you, your child, and your family, that’s all a process. It’s what keeps me up at night. So much has changed not just in the past few years but in the past few weeks. You can only set it aside to deal with later for so long. You eventually have to feel what has happened. All I wanted was to sleep but all my brain wanted to do was process, mull things over, and refused to budge. I couldn’t dial in to sleep, I had to hit the reset button. That meant convincing my head to do so.

In light of the past few weeks, we had to take summer day camp out of the equation for Braden. “What if his airway needs suctioning? What if they don’t recognize it? The nurse could be forever away at such a large place,” battled, “Yes, but he must live as normally as possible! He will have an aide who could get him to medical attention as quickly as possible.” Alas, the battle against camp won. We will find a way to make it up to him, but I can’t stand how unfair it all is for him. His health and body are failing his smart and spunky little self.

Reboot. Recharge. Ready for another day filled with adventure!



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