Sometimes stories go viral in special needs circles and beyond that do not sit well with me. And fester inside of me. Until the words then spill out of me.
So I’m here to say I never knew that motherhood would change me in such a profound and positive way.
Kreed taught me more about life and how to live it than any one person or book. Despite his rages and tantrum that were beyond difficult. That is not what I focus on. We did what we did to protect him. Some days I had nothing left in me and I still had to do what needed to be done for him. But I don’t regret a single moment of those times. Because at least I had time with him. Life is short. Time is relative and I’m so glad I didn’t spend my time with him agonizing over the things I lost or wish I had. Kreed taught me to live in the moment. Just the moment. And that changed everything for me.
I recognized myself as a mom. A fighting fucking strong, amazing mom to this amazing boy. And he made me that way. He made me fight doctors in a way I never had. He made me fight for his health and wellness in a way I didn’t even know was possible. And he made me stop and smell the damn roses even if I didn’t want to. Because we only have this moment.
I gave up my career for him and gladly. My education was not wasted or training. Everything taught me to fight for his life. And to teach him. About everything. And being his mother was everything. My life with him was not nothing. It was the greatest joy of my life.
I would give anything to not have to use the bathroom alone. I miss his breaking in to show me what he has said on his device. Or hand me a plaid shirt that meant Five Guys lol.
I would gladly change Kreeds bed sheets every single day again, if it meant I had one more millisecond with him. I would gladly deal with a night rage of his trying to bite off his toes if it meant I had one more chance to try and help him and do it better.
I would glad do anything for one more second with our boy. Who did teach us to stop. Slow down. Wait. Be patient. While Kreed was go go go non-stop, he was also the boy who wanted to be outside with his arms open wide and feel the wind on his face. For that moment. He was the boy who could rage and try to kill himself banging his head so hard he cracked his head open or ripping off his toes in one moment and the next be cuddled up in my lap, all 180 pounds and almost six foot frame and breathing. In and out. In and out. And just being. For that moment where nothing else existed.
I find those that write about how miserable their kids make them, are not seeing these moments. And just seeing what their child is doing to them, instead of for them. They aren’t seeing the joy a moment can bring. Because it’s those moments that matter. Life is short and time is relative. It can end tomorrow and then years down the road those moments feel like yesterday.
We did write about our incredibly hard journey. I filmed some of the rages. Our life was not an easy path. But it wasn’t easy for him. He was the one who had to fight for his place in the world. My place was by his side showing him how to be in this world and be at peace and to love this world. And love this world he did. More than anything. Sometimes he thrashed and screamed at this world. Other times he hopped down the isle looking for his favorite chips smiling from ear to ear. He tried so so hard in this world. Seeing his struggle had profound effects on me. My struggles were nothing compared to his. I can communicate. I can write in this blog. I can get in the car and go. I can do whatever I wanted. He could not. He was bound by the limits of his body and brain and just wanted to be free. So we did our best to help him in every way we possibly could and show him every wonder of this world and did anything for a smile. We went through hard moments to teach him and later see him flourish. If my job here on earth was to teach this incredible boy and that’s it, no problem. I would give anything to have that job back.
But the longer you stay inside yourself feeling like your the one having the hard time and not seeing the moments for what they are, what our children can accomplish and the every day victories, the further away those moments will be. The more you will lose time. And the more you will regret if tomorrow came and your moments end. Like ours did.
We have a perspective of both having a child most would consider beyond severe for the rages that happened and what it took for us to keep him safe and what we did to help him learn and find himself in this world and loving this world. And what it’s like losing that child after giving everything you had inside you and more to try and keep him alive and having him slip away in your arms. You want to talk about feeling lost? That’s when you bury your child. The child you took care of 24/7 and kept alive and fought so hard so he could have the life he loved. That is lost. That is losing yourself. That is grief.
I wrote a post I will share the link here. The Luxury of Anger. http://kreedsworld.blogspot.com/2014/11/the-luxury-of-anger.htmlThat’s how I felt while he was still alive and I’m thankful to this day we didn’t fall prey to that anger that could have easily then sucked the life out of Kreed because I would have been too busy being angry at our life to have made sure to give him an amazing one. I didn’t have the luxury of anger. Most of us don’t because we do what we have to do for our children. Period. And I’m a better person for it and I’m more of a person than I ever was because of the love of him and the fight for him.
Balance comes from celebrating the moment. Every moment. Living moment to moment. Breathing in one moment. Doing a thousand things in the next. Then back to cuddling on that couch with Kreed. Breathing. In and out. And remembering the sound of that breathing forever because it now remains only a memory.
This is our truth, from someone that lost their boy and only has reflection time now. Only memories on a phone full of pictures and videos. Memories swirling in my head. Only memories. And I wish I had the moments again.