Without a Crystal Ball

Our Journey through Chronic Illness & Autism

Grief can do incredible things to people. It can take you down tunnels of darkness that you never knew existed. Your body, mind and spirit can get sucked in to destructive behaviors that are like toxic drugs in your body. As you drink in the negative energy, you body becomes full of hostile, angry feelings. As you become more and more fueled by the toxins, your body craves more of what you are seeking. Everything around you becomes something to fill the large hole in your heart. The emptiness you feel is so suffocating you can’t walk away from it, and there are days you dream about driving off the road and never looking back.

Over the past three years, my life has been one trauma to the next. The day of my son’s birth was traumatic because labor lasted 3 days, and at the end a very sick child was born that was clinging to life. My body was bruised and ripped apart, and I remember instead of feeling pure joy I felt incredible sadness. As he grew, more and more issues popped up with his health. There were puzzling and confused looks from doctors, and pain on their faces as they deliver additional news to us about his prognosis and health. Over time the anger and sadness turned to numbness, and every single diagnosis was less and less impactful.

In the numbness, I because incredibly apathetic to everyone and everything around me. My job, my friendships, my family and my marriage. The only thing that mattered was my son and his long term health. I jumped head first in to research, and trying to find ways to help him. The only people I wanted to surround myself with were other people that were as frustrated and unhappy. It was too hard to be around parents with typical children. Instead of being happy for them, I was angry their kids didn’t meet milestones, or that their motherhood experience was better than mine.

Then one day something powerful shifted inside of me. I looked around at my life, and everything that was going on. There was nothing I could do to change the circumstances of Von’s illness, but I did have the power to change the attitude I had about it. I could either wallow in my sadness, and I could spend my time seeking out others to wallow in the pain. Another option was I could find the positive, the beauty and the miracle in everything we were experiencing.  Nothing I could do would ever change the fact that Von was born with a disease that was ravaging his tissue. However, I could do everything in my power to give him the best life possible. There would absolutely be difficult days on the journey, but I can hold on to my faith that no matter what things will work out. Even in the impossible moments like last week, when we were told he needed heart surgery, I still did my best to hang on to the positive.

I made a promise that I would seek out only others that could lift me up. I would in turn be a positive influence in to their life. My promise included that despite my frustration with Von’s disease, I would never hold it against anyone else. The world is a broken place, and no matter what your best intentions are bad things do happen to good people. No matter how much I love Von, he will always have parts of his body that are broken. It’s not anyone else’s fault this happened, and there is no one to blame. Unfortunately, the cells that created Von were lacking critical pieces to help his tissue stay strong. This isn’t curable, and we will have to work very hard to stay on top of the issues it will cause within his body. Thankfully we have a wonderful team, and that is what gives me hope.

My promise to my friends and family is that no matter how dark I feel, I will still be there for them. We all have troubles we go through, and we all have times and seasons where things feel impossible. I will never become so self absorbed that my troubles will exceed someone else’s issues. All I can do as a friend and family member is offer my support. I want to harvest positivity around me, and in order to do that I have to let go of the negative. I took a big step this fall in letting it all go.

I’ve learned that no matter how bad you feel, making others feel worse is not a solution. It’s far too easy to get sucked in to the negative, and instead I now make a choice each day to have faith in God, to hope for the future, and to live an authentic life. The beauty is when you do the right things, you are free from the guilt and sadness. When you are no longer thinking or saying hurtful thoughts, you will find yourself surrounded by others that are genuine. When you open yourself to being vulnerable, you have the opportunity to feel and seek the human kindness in this world. Since making that change, our lives have become so rich and full. We have developed powerful friendships with families from church. The friendships I have made through Early Childhood Education have become like sisters to me. I imagine all of us growing old together. All of this was possible because I refused to let negativity rule my life.

Having a sick child is hard, and being negative is easy. I challenge all of you that are reading that are feeling this way, to find a way and a support system to be positive. Try to commit to being a positive force in your child’s life, and use that positivity to help others. Nothing is impossible as long as you have faith and positivity in your life.

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