The Journey isn’t over-Today is Thursday I’ve hardly slept in 4 nights, I’m strung out on intense emotion and waiting for the inevitable crash. This blog is called ‘The Max Journey,’ it was birthed out of the need for me to pour out my heart during some of my darkest days. It’s followed through highs and lows journeying with my son who has severe special needs.  

  You’re never ready for the journey to end, never prepared for that moment when you’re confronted with a freight train of reality. We’ve been told on multiple occasions that the journey was ending. The first almost before it started we were told he would not be alive through the night, then at about 2 1/2 we were told he had 6 months to live and that we were lucky we had the time we had had with him.  

  This last Sunday however was different, after the chaos at home, the ambulance, Max was crashing hard in the emergency room. I arrived at the front desk a bit after Max, and was promptly handed a visitors sticker with a large C on it. Now I’ve been in and out of this er to know numbers are good and letters are bad, as they use letters for their trauma rooms. I was ushered to his room and as the curtain opened I was quickly confronted with the seriousness of the situation. 2 doctors and 4 nurses surrounded Max’s lifeless body. He was non-responsive and his color had a grayish tint that led to a sickening feeling overtaking me. The look on the doctors face was the last straw, although he continued to speak the words “we’ve got a really sick kid on our hands,” what I saw was a man out of options and out of ideas. I stood in the midst of orchestrated chaos and it felt as if all the noise was turned off and staring at my son I said to myself “it’s over, the journey is done.” It’s not that I haven’t seen him crush the odds in the past, or that I didn’t have hope or faith. It’s just this time felt different. The thoughts started coming furiously in my mind. Starting with the self encouragement of you always knew this was a possibility, it’s was an amazing journey. To then being consumed with pain thinking about what this would do to his sister who was set to celebrate her 12th birthday in just 6 days and everything in between. I felt as if I was on my own private roller coaster lifting me up whipping me around and dropping my from insane heights. While everything swirled around me I wrestled with the end.  

  Yet this wasn’t the end. Max was admitted to the pediatric intensive care unit and he fought and fought with every fiber of his little frame. He still in his deluxe accommodations, and he’s still fighting with every breath.

    He is not done, the journey is not over