A brief intermission

There is still so much of “our story” to be told, and believe it or not, it’s not all sadness. Many beautiful, happy, and wonderful things have happened between diagnosis and today, I plan to share them all; the good, the bad, the ugly, and the beautiful. The only way for something to be meaningful to someone on the outside is to be real, to be honest, and to really bare your soul regardless of how that may be perceived.

I decided a need to take a brief pause in telling my story. The beginning, and really the first year was so damn hard, and it was long, and much of it (though not all) was terribly painful and trying to even just relive it all at once, is overwhelming. Looking back, I still don’t know how we all survived it. I really don’t. I guess you find your strength out of necessity. You go into survival mode and hope and pray that’s enough.

Recently, I had put a post on my personal FaceBook account that I really think belongs here. I think I am most often asked, “How do you do it?!” and one day I really sat and thought about it, and it was tough to answer but the words did come….

I am often asked “how do you do it?” In regards to being the parent of a child with a terminal illness.
In all honesty, I wonder, how do you not? Is there a choice?
I remember in the beginning, not wanting to get out of bed. Not wanting to face the world, or the gravity of our new reality.
With time, there were more good days than bad. You eventually accept that the sadness and the uncertainty will always be there. It becomes part of who you are and you make room for it in your existence and just pray to god it doesn’t dominate your life.
You learn to live in the moment and try not to let the inevitable devastation the future will bring ruin the here and now.
You love harder, laugh louder, and celebrate the tiniest victories to make up for the defeats that come, and they come often.
You cry, and you cry a lot. There is no denying that, there is no filtering it. The tears come and the thoughts that come with them can be down right unbearable at times, but allowing them to come and pass is all you can do.
Finally, you do everything you would have done had this never happened. You go to the park. You play silly games, watch movies, go to grandma’s, eat cookies, and all the other mundane things you do in a childhood, you just do it with a little more urgency and appreciation than you would have, had you not been told that there was a need for urgency or appreciation.

Writing has always been an emotional release for me. To be able to put feeling into words and then use those words to reflect upon is so therapeutic. And even though my creativity is largely fueled by my pain, I feel lucky to have it. If sharing myself and our story helps one person find strength, find answers, or inspires them to tell their own story, then reliving and relating my pain will all have been worth it.

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