Without a Crystal Ball

Our Journey through Chronic Illness & Autism

We all have coping mechanisms we use to get through traumatic events. Some events are so hard to fathom that the only way we know how to get through is by finding people that have situations more difficult than ours. I read a book about this very topic by the Dahli Lama. In the book he discusses the importance of always finding perspective. He also discusses what it means to suffer. Suffering is a choice, and a way to get through it is to find perspective in the world around you. In theory it sounds so wonderful. I even use it myself. When I look around and realize our reality, I’m constantly looking at other families dealing with so much more. I often remind myself that it could be so much worse.

However, the hardest part for me is when people remind me that they haven’t had life as hard or as bad as ours. It bothers me when I’m the perspective for others. I hear it a lot from well meaning friends, they will say “well my child has had it difficult, but it’s nothing compared to Von.” Generally after I hear this, I let them know I really don’t like when people say this to me. It isn’t because I don’t believe we have been through a lot. I know that our lives are very different in scope than the average American family. However, every single person and family, has something that they deal with that is difficult. We all have mountains of adversity in our lives, and it is simply how we view the adversity that gets us through the days.

When my friends children are sick, I generally get really concerned for their kids. I recognize that illness is traumatic for all parents. The magnitude of the illness truly makes no difference. When your child is suffering, it is the worst feeling in the world. There is nothing harder than knowing you can’t help your child be well. They simply have to get through the virus or infection on their own time. I often make a point in checking in with my friends when their kids aren’t feeling well. It may be a minor illness, but if the child is a relatively healthy child, a minor illness can be a big deal to them.

This also rings true for friends when their kids have to have surgery. Even if the surgery is minor, it still means the child is being put under anesthesia. Any time your child is put under, there is a risk they will not wake up. I try to remind myself that even though our journey is more intense at times that all parents want the same things for their children. We want our kids to be happy and healthy. There are certainly levels and varieties of disease and illness, but the truth is that is not easy to have a sick child.

As we prepare for open heart surgery, I am leaning on the faith that the surgery will be really successful. I am absolutely terrified, but I refuse to let the fear rule my life. Von has definitely been through a lot in his short life. He certainly has more doctors than I have ever had, and he takes more medications than most people ever will. However, this is the life we have been given. I have two choices. I can either be sad and miserable, or I can take the disease by it’s horns and fight for better quality of life for my child. There will never be a cure, but there are ways to improve his over all life.

I am working on finding my own perspective on how I manage my thoughts and emotions of illness. I no longer allow myself to be stuck in negative thoughts or feelings. If I chose to be positive and have faith, I will have a better quality of life as a parent. The best thing I can ask of my friends during this time is to be supportive. We don’t expect anyone to be able to fix this for us. Todd and I know that the road ahead of us is long and will be bumpy. However, nothing in life is ever guaranteed. Even healthy children can have accidents or develop illness that can alter their lives. I actually feel lucky that this is the only way we know how to parent. We don’t expect things to be easy, and we don’t take for granted his health and wellness. It is easier to manage bad news because it’s part of the disease.

Von’s cardiologist recently said to me, “You are taking this news really well.” In truth, any time I hear a new diagnosis my heart breaks in to pieces, but I get back up and dust myself off. The only choice I have as Von’s mom is to be strong and advocate for his care. We have been forced to make really difficult decisions for him, but all parents have difficult choices they make. There is nothing easy about any of this for any parent. Even though things appear hard for us, I want you to know I get you have your struggles too. Even if you don’t think they are as difficult as mine, I still value your struggles and empathize with you. The only thing we can do as humans is to support one another through the difficult times. It doesn’t matter how difficult the times are because every one of us struggles in some way. You may not fully understand what we go through, but I guarantee if you look at a tough point in your life and how hard that period was – it will accurately reflect where Todd and I are right now. The great thing is that time keeps on moving, and it’s only up to you if you stay stuck. We won’t stay stuck. Von deserves more than that from us.

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One thought on “When you find Perspective with Chronic Illness

  1. Amy says:

    Awesome article. So very true. We all have our struggles and so happy that you and Todd are finding your truth and perspective through your life’s ups n downs. After all that is what life is really All about. Learning and finding our way thru adversities – and how we deal with it.. Bitter or better.. Is really what differentiates us all. ❤️ You all~ happy thoughts peace and love sent your way…. Love how you advocate for von

    Like

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