When I Knew in My Gut My Son Was Sick, but He Couldn’t Tell Me
Six weeks ago we thought our son was gone. He was here but not “here.” He didn’t smile. He needed oxygen 24/7. He could barely move his body. He rarely made a sound and didn’t want to communicate. He looked at us as if he didn’t recognize us.
Today, he smiles with his beautiful dimples, he is without oxygen during the day, he can walk again, communicate again and, most of all, he finds joy daily. Now he’s riding a horse, playing sports and enjoying his life again. This is miraculous to us for so many reasons.
We had 6 to 8 months of rages. We thought it was low blood sugar, but in reality, his gall bladder was slowly failing him. The rages somehow began to be a daily occurrence, and his intensity ramped up. His previous doctors wrote it off as hormones and autism. We knew it was more but didn’t know what to do, so we moved to a new state. The drive was hard enough with multiple rages.
In our new state with a new house, new job and new everything, the rages became something we had never experienced before. The sheer violence we experienced daily could never ever be conveyed in words. For the first time in our lives with Kreed, we were afraid. Feeling that fear was one of the worst experiences of our life.
But it also pushed me to fight harder and look harder.
We knew our boy was an amazing kid and so loving and generous and joyful. He loved hugs and snuggles and loved to talk every day on his device about food and showers. Yet here he was beating himself, the house and us daily. Something was wrong, and we weren’t going to stop until we found it.
We finally got a break when the rages stopped suddenly, and he wouldn’t get out of bed, eat or engage with us at all. It was a break because we finally felt like the doctors wouldn’t see a kid with autism raging, but a kid who was in a health crisis. After four days of no eating and throwing up anything he ate, we sped off to the ER. The rest of our journey is chronicled in both “Out of the Darkness” and “Here but Not Here.”
The rest of this story is about his awakening. Our boy finally woke up from the pain, the medications and the fog that took him away from us. It feels incredibly miraculous that he has come back to us, and it’s a testament to his strength and our strength as a family. We have documented our entire experience from beginning to end with no filter. Our pain, our loss, our love, our return, our joy. We documented this journey to show others to never give up. If you know in your gut something is wrong, if you know it’s more than “behavior” and you know your child, keep fighting. If we hadn’t, Kreed may not be here today. If we hadn’t moved and met the incredible doctors at Memorial Hospital in Colorado Springs, Colorado, he may not be with us today.
This is also a testament to Kreed’s strength. Our son was in incredible pain, which we may never know or understand the depth of. He tried to tell us and kept asking for the hospital and doctors. We continued to listen and we took him to some doctors and were continually turned away and told that it was nothing. Listen to your kids even when they don’t say much. I am so thankful we continued to take him to the doctor and continued to question him. Never again will I doubt his communication attempts. He knows when something is wrong, and I can’t imagine how frustrating it must have been when he knew no one was listening and he was suffering in so much pain. I can’t imagine how this must have felt for him. No wonder he lashed out so severely until his body finally gave up.
I’ll never forget the day our son came back to us. When he smiled again. Laughed again. Hugged again. Kissed again. Communicated again. Those memories have slowly replaced the memories of him lying in that hospital bed and needing a machine to breathe for him. And we know for the rest of our life to fight, fight, fight for Kreed.
Fight for communication, fight for health, fight to be listened to, fight for life. I can’t imagine being Kreed, locked inside his mind, unable to fully communicate his thoughts and knowing he’s not always being listened to correctly. Knowing that his body doesn’t always work and causes him pain. I can’t imagine that.
And for that reason, I’m more than happy to spend the hours and hours it takes to get him to communicate on his device, teaching him how to do things himself, listen to him, fight for him and try to find new ways to experience joy. We are exhausted more days than not, but I barely feel it because I always keep in mind that I can talk, I can be listened to easily, I can make my own food and I can live a life without relying on other people to do everything for me. He can’t do any of those things and needs 24-hour supervision and someone to help him every step of the way. So no, I don’t feel like my life is over because we have to spend so much time helping him, and no, my exhaustion doesn’t compare to what he goes through every day.
And to my dear sweet boy Kreed, I am so sorry. I’m so sorry for not figuring it out fast enough. I promise to fight even harder next time and listen to your words. I will keep teaching you and helping you and most of all, finding even more joy for you to experience. We love you with everything we have and more.
Editor’s note: It is with a heavy heart we share the news that Kreed passed away on May 8, 2016. Our hearts are with his family, and we’re so grateful to help keep his memory alive on our site. He was truly one of the mighty.