Turning Back the Pages of Time

It seems so crazy and such a far off memory when I think back to the battle we already brave for Brandt. The battle was one I fought without relent, knowing that I was my son's biggest advocate. From the beginnings with Early Steps and countless therapy sessions, to facing laundry list of tests, we were never certain which direction it would lead us. Hearing terrifying results from the geneticist, and then deciding what was next.While I was ready to move forward full-steam to do anything necessary for Brandt, Darrin wanted to stay idol and wait it out, fearing the risks and the unknown. From countless failed attempts at MRIs to finally facing the results of those  MRIs. All the while braving scary secrets of an impending surgery that left me feeling absolutely powerless. And, through it all, I knew that I had to find strength in the struggles without ruining my marriage, despite the conflicting viewpoints, in order to rebuild a marriage that seemed to be fading away.

As I turn back the pages, reading ink left smudged and blurred from pages left untouched, I now realize that I will be tracing those blurred words; I will be writing the same chapter again.

Yesterday, I failed Brant in the battle that I have firmly stood at the frontlines for over the past five years. In a time of an important appointment which would shape our journey forward, I chose my job over my son. All day, I knew that I would be failing him, and, yet, I felt like there is nothing that I could do about it. While Darrin took him, and I know that the world will not end that I wasn't there, in my heart of hearts, I knew I should have been.

And, so I press forward, and I do the best that I can do for my son. I don't get swept away with feelings or predictions of what could be; I just do what needs to be done and keeping pressing forward.

The Next Chapter

It's hard to write this, to read this, to communicate the feelings that I want to share but no longer am able to. As I type, I erase. I rewind and start over again. Second-guessing.

I have read the journey, but the ink has faded as the years have pressed on. What once was a memory is now a new story to tell. Tomorrow, we turn the page, and we write the next chapter with invisible ink that no one will ever see. The pages worn and tattered from a book read too much, a pencil now dull from desperation and doubt. Tomorrow, we begin the next journey of a world unexplored, the path unlit. It is a difficult journey, with roads that could lead to difficult destinations, all the while trying to find the road to resolution.

This year has been one of fear, each day wondering what will unfold, what will ensue. It is a heartbreaking feeling knowing that so much is happening, yet not knowing how to help.

I entrust the world with the care of my Brave Brandt, knowing that he will shatter their generosity with his gesture of misguided fears--knowing no other way to respond the world so overwhelming, so daunting. It is a hard feeling knowing that this little boy who holds me so tightly as to never let go, who begs for nighttime cuddles, could be so harsh and hurtful. It is scary knowing that there is danger lurking each day and not knowing when it will unleash next.

Erase. Rewind. Start over. Pretend. No end.

And, so the pages continue to write themselves in invisible ink--now visible but blurred.

Despite it all, I think of the world that surrounds him, how overwhelming it must be. A boy so frightened of the world around him that he knows no other way than to act out; a boy overwhelmed by the fears of a world caving in. How dark that must be. In solitude, his is safe and secure.

Tomorrow, the journey begins. And, so the pages turn....