Without a Crystal Ball

Our Journey through Chronic Illness & Autism

We grow up in a culture that prides itself on excess. We want to have the best of everything. The big house, the big car, the best clothes, coolest new bags, best shoes, and the best picture on social media. Our lives are filtered through  lens of perfection. We don’t show the messy, difficult or uncomfortable. Each day we gloss through our feeds on the internet, and we see the smiling children and families. We compare and contrast our lives to what we see through the portal, and often times we feel empty after it’s all done. Most of us spend so much time trying to appear normal, and holding it all together that we all fail to realize something really simple: There is no normal.

Normal is a dream that is forced down our throats by the media, the news, the schools, the universities, and the corporate world. Yet if we are all honest with ourselves, most of us have something that is so far from normal it makes us feel less than everyone else. We feel isolated, insecure and depressed because we can’t have the picture perfect life that everyone else seems to have. Yet if we really start pealing the layers of onion in our messy lives, I don’t believe that anyone is actually normal. In fact normal doesn’t exist. We all fight and strive to get something that isn’t really true. It’s a farce that has been told to us over and over that we have to have the best of everything. We must be the thinnest, the richest, the best in academics or the best athlete. Settling for simply being average just isn’t acceptable in this society. It tears us apart, and makes us go to bed tossing and turning hoping to find the one thing that will make us whole. In truth, nothing will make us whole but finally realizing that we can’t have it all. Having it all is a myth. Even the richest people will tell you it doesn’t solve their deep emotional emptiness. It only gives them things.

I spent a lot of time wishing my life as a parent would be more normal. Why couldn’t my child be developing normally? Why did we have to fight so hard for every single milestone? Why couldn’t we just explore and play in the world the way every other family does? Yet, then I realized every single family has something that they struggle with despite the appearance that they don’t. While my family deals with chronic illness and developmental delays of a child. I see my friends, neighbors and strangers deal with other very big and difficult situations. There is divorce, addiction, abuse, depression, mental health issues, financial problems, self esteem issues, grief, pain, and agony that can hold any single family hostage. I realize through this journey that we all have our stuff that make life hard and messy. One families mess will not be the same to another family. Many of us hide our messes because it’s easier to pretend they aren’t there. Yet, in truth we all are dealing with a lot of adversity each and every day. Most of us are forced to be stronger than we want to be to manage the difficult days. Many of my friends are dealing with things that are harder than I could ever imagine, and dealing with a sick child at times feels easy to me.

As a culture we spend so much time filtering our life view to others. We don’t talk about the messy, and I have put the messy part of our life out there for everyone to read about. The most common feedback that I receive is: You are so strong, I don’t know you how you do it. There are days I want to look back at that person and say “What is hard in your life? What are you hiding? What is the strength you aren’t showing me?” I know every single person has a story of strength I’m not seeing. Perhaps I’m simply being brave in putting it out there about what our life looks like inside our home. Sure we have really hard days, but we also have really amazing days. It doesn’t matter to us most days that Von has a different path than other children. The love he gives us is still the same. Is it hard to look at the future for him? Absolutely. However, nothing in life is guaranteed. I know that even the most perfect looking family will encounter something. Instead of focusing on what the future will be, I focus on each and every day. We don’t make plans for college, school, or activities. We take things day by day, and by doing this we have found a way to manage the stress of his illness. Sometimes I think if more of us just slowed down a bit and took a minute to soak it all in things would be a lot less stressful.

I’ve learned more about life and the blessing it is through managing his disease and disability. I’ve been close to death with him, and I’ve watched his spirit fight back and win. I would rather have these memories and life lessons than fight to be normal. Through this experience I’ve been taught to cherish each day, and really know that the big house, best car, best body, and best clothes don’t matter one bit. I can’t take any of those things with me when I leave this earth. I would rather spend my time being abnormal and being brave enough to show it to the world. I encourage all of you looking to us and admiring our strength, to look inward and realize you have strength you don’t even realize. We are all fighting something, and getting up each and every day for many of us is really hard. I praise all of you for getting through your stuff, and I encourage you to also embrace your abnormal. The truth is normal not only doesn’t exist but normal is boring.

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