The past week and two days

I have had more thoughts in the past week and two days than I can even begin to comprehend. My best friend; the man that I admire most in this life died. But I have not been able to begin grieving my father’s death because, how does one mourn the death of one family member while simultaneously attempting to save the life of another? Over this past week my sister, my mother and myself have attempted to take on the job that my father had single-handedly done without complaint for the past 20 years and to put it simply, we cannot do it.

One thing I learned from my father is the importance of not seeking out pity or attention for our own hardships in life, so writing a blog on my experiences surrounding his death and the mission to find my brother the help he deserves is confusing for me. I feel torn. I feel that if I am going to put my entire life on the internet, I have to have a reason beyond the millennial desire to be constantly affirmed by others. This blog can’t be another facebook post, instagram picture or snapchat video– attempting to give glimpses into my life for no real reason beyond the inclination to document everything about my existence.

I decided that I have three reasons for putting my ramblings into the internet. The first, is simply making our story available for those who care to know. My family has been astounded by the amount of support we have received in our time of need. Our family and friends have not only raised approximately 54,000 dollars in total for the “Stephen Knezz Memorial Fund for the Care of Matthew Knezz” but have also donated an unbelievable amount of time and love. I want to offer our story without reservations to these people.

The second is to gain some guidance in the process of accepting my father’s death. I have had so many individuals reach out to me saying, “I also lost my father too soon. If you need anything, let me know”. I want to share my thoughts with these individuals and ask my questions and hopefully gain perspective on how I will go about accepting something that still feels like a dream.

The third is to reach out to other families with members like Matty. I feel that there is an injustice being done to people like my brother. Autism awareness is at an all time high– but awareness of what kind of autism? My brother has been put in and has been taken out of countless “schools for autistic individuals”. My family has been told that the best place for my brother is a glorified jail cell. I refuse to believe that there are no other families that are encountering these same issues. My brother is not his violent meltdowns and my brother is not his diagnosis; he is so much more than these things. I hope our story reaches others like us and I hope that this experience can act as a catalyst inside of us to spearhead a change that must happen.

Excuse me while I get off of my soapbox to end on a simpler note. My father was a complex man who led a simple life– so I have to remember that if his death doesn’t in fact lead to a revolution in the autistic community, his life’s devotion to my brother is not in vain. One of the last posts on Facebook that my dad made was for my brother’s birthday. He wrote, “Happy birthday Matt. Thanks for teaching me life is its own reward”. No matter what these experiences amount to, I will carry what my father learned from my brother with me forever: Life is its own reward.

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4 thoughts on “The past week and two days

  1. Thank you Emily for starting this blog. Your family has been in my thoughts and prayers daily since you lost your father. My husband, Bryan and your dad grew up together in Cal Park and he was a fellow Laughin Gas member. Your dad read from the Bible at our wedding. Steve, Bryan, and other friends had many insightful conversations about life, a lot of laughs, and some disagreements. My two children and I lost Bryan 5 years ago. It has been a journey of growth for all of us. We grew in ways we could not have imagined. Bryan’s strength is what got us through this, and your dad’s strength will get you through as well. I have a nephew with Down Syndrome who is also non-verbal and these are special people who have so much to teach us. I know your dad’s life being one-on-one with your brother was very challenging, but I think Steve yearned to learn what he did while loving your brother. Steve was a good man. He still lives on and he is right there with your family, guiding you and loving you still. He is in a place of pure unconditional love, free of anguish. You are a beautiful family. Steve loved so well and that is very evident in all of you.

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  2. Thank you for opening your journey to us. You are a brave, insightful, loving woman, Emily and I’m proud to be called your friend. :- ) Know that you are loved. Infinitely and incomprehensibly loved!

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  3. Hi Emily,
    I was incredibly moved by your blog, and felt a need to answer your calling out. I echo what others have said, your are an incredible courageous and gifted person, and have touch many, as your father has. I guess I will start with giving some thoughts on your third point first. As you might know, I head up the Mental Health Commission in my area and provide considerable funding for services for individuals having autism. I often help family members find services or advocate for individuals in what is a maze and patchwork of services full of gaps. I am used to calling staff members, case managers, facilities, visiting clients, etc. I was happy to help in a small way last week by making some calls, and if there is anything else I can do to support you, Matt and your family, just ask. In fact, to touch on your second point, there is an ‘army’ of people around you willing to help you in your struggles with trying to understand the incomprehensible. Each of us have a little we might be able to share.
    I think I can understand something like what you might be feeling. About 7 months after I graduated college I lost my mom from cancer. It was such a blow to me and our family that I wanted to talk with anyone and everyone, to try and make sense of the senseless and not be left alone in my confusion. Talking and sharing with other people helped immensely as I went through all sorts of emotions, and I hope and pray that your sharing does the same for you.
    As to the third point, from a lifetime of working for nonprofits, people are incredibly generous. Don’t be afraid to keep this in the forefront, and ask again when you need help. God Bless you Emily, and Matt, Stephanie, your mom, and your dad.
    Love, Uncle Ron.

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