Worth Every Moment

It's hard for me when I let life slow down, and I take moments to reflect. 127 days ago our son attended preschool. I picked him up from what was just another day. And within hours arrived at the ER where they did a CT, and found that our precious 4 year old son had a massive brain tumor in his 4th ventricle. The air was sucked out of my lungs. For a moment I froze. It took me hours to call anyone. I didn't want this news to be true. And by sharing it, it would be fact. I couldn't let the words leave my lips. By 11pm the word cancer was dropped like an unwelcomed and unexpected bomb. 

I never thought this would be our life. How did we end up here? You never think it will be your child. Until it is. And you definitely never expect it to be your child. 

127 days. 18 weeks. That is the time we have spent in the hospital with our son. We have watched him through every moment. Every scream, every cry, every sleepless night, every puke covered pajama change. And every pee soaked bedding change. Every needle stick, every poke, and every blood pressure reading. Every therapy session. Every smile, every laugh, every word he's spoken, and every word unspoken too. Every chemo drug, every blood draw, and every blood transfusion. Every drip of IV fluids. Every sunset and every sun rise. We have been here together. Fighting for him. Fighting together. Waiting.

Our journey is still beginning. His story is only just starting. Cancer will forever be a part of his life. It will forever stay with him. Through the scars. Through the lasting side effects. Through the damage left to hopefully save him. Through the tests for many hopeful years to come. His life will forever be altered, no matter how this leg of his journey ends. Cancer will always haunt us. It will never be a distant memory, but forever apart of our everyday lives. 

Sammy has logged 127 days in this journey. And still has at least that many ahead. We are hopeful he will get to go home before the start of next school year, but nothing is guaranteed in this journey, or in life. It is still hard and overwhelming to process that this is our life, our new normal. This shouldn't be our normal. It shouldn't be anyone's normal. But yet, here we are living this life. Living it each day. Each minute. Each heartbeat. Living it for him. Fighting with him. Because I couldn't imagine a life without him in it.