Understanding is an extremely powerful force and when it's given to lives effected by autism it truly is a gift that is felt in a way that just flat out brings an ease to life. A little story today about what the meaning of understanding can do and how it's done.
My dad has been fighting stage 3 esophageal cancer for the last 4 months. Starting as a large tumor which brought him to daily radiation treatments and weekly chemo to shrink the tumor. He needed to be able to stay healthy enough for major surgery to remove what might be left of the tumor. Eating was his biggest challenge and yet his life depended on it. Swallowing was extremely difficult along with burn from radiation, and stomach upset from chemo but he has fought hard. I have been able to be a part of this process and be there with my mom and dad when needed. His surgery has been scheduled for a very long time and it was yesterday, Nov. 5th. He was in fact healthy enough to move forward with the procedure and our entire family excited to say goodbye to cancer.
I have known all along I would not be able to go to the Seattle to be with everyone for this process. I have thought long and hard on how I could do that with my son. I have worried daily about having to stay behind because in my heart and soul I just wanted to be there. The challenges I face with something like this are huge and no matter how hard I thought about it I knew reality was, I wasn't going to be able to be there. Of course my dad demanded I stay home, take care of his dog and check his mail. One side of that was he didn't want anyone to make a fuss over him and the other side was he knew it would be difficult for us. I dropped him and my mom off the day before surgery at the ferry terminal, gave him a hug and told him "I will see you cancer free in a week." With a huge smile on his face he agreed and off they went.
Surgery began yesterday morning at 8am and I had almost zero concern about how things would go. My mom, my brothers, and my sisters in law, all there to see things through. Not going to lie, not being there was still very much eating at me but hoped my absence was understood. Just after 10am my brother called me and delivered news no one expected. When surgery began they discovered stage 4 cancer in the walls of my dad intestines and the initial surgery was canceled. This news completely broke me down and shocked me. It's not easy to shock me because typically nothing really does but this was something no one expected or even close to it. My level of need to be there jumped 500% with still no way of making it work.
An autism parent would be able to completely understand why a trip through the city and day in a hospital would be a complete disaster but I worried that only an autism parent would understand why. I spoke with my dad last night and told him I wanted to be there only for him to tell me "no, stay there and will see you when we get back." I have missed a lot of things over the past couple of years and most of the time I might get a little bummed out about it but this was one time I have lost sleep and have felt very frustrated with circumstances to say the lease. It had been tearing me up and on a entirely new level when the bad news rolled in.
This morning I went over to my parents house to bring in the mail for them and had myself a chocolate craving. Had a friend who used to tell me chocolate was as close to a hug as you could get sometimes and I knew my dad had a small hug stash in his desk. I opened the drawer and on top of a large stack of papers was 5 little tiny bite size hugs in the form of snickers and milky way. That stack of papers under those little chocolate hugs was every single blog I posted since July of 2012. Printed out, neatly stacked and I know he has read every one of them. I sat down on the bed next to the desk and cried both tears of sadness for being here when everyone was there and grateful tears that the one person who I wanted to be near understands as well as he possibly could why I was not.
If a person can give an autism family one thing it's not advice, diet plans, words of encouragement, cause articles, a night out, it's simply the simple act of trying to understand even if you never do. That simple act that takes only the effort of listening or asking questions makes all the difference in the world for parents and especially a child with autism. It really is the easiest thing a person can do with an extremely powerful impact.
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