I should confess, that I’m not at all organized in how I write these series of thoughts. I wish I could say, that I had a rime to my reason, but I don’t. If anything, it might take the route of our story, what I ran into as we walked down our path. These last few weeks, I’ve been thinking about hope and expectations. We should never give up hope, but should never trust false hope. Expectations are good, but only if they are reachable.
The first time in our story that I felt actual hope, not a big it’s all going to be fine, type of hope or expectation. Just a little, okay we can at least fight this, type hope. It was as the Dr.’s were trying to wean the kiddo, off of the respirator. It was somewhat of a relief that he had been in a drug induced coma, since he didn’t have to experience some of the many painful things that were being done to him. At the same time, it was also frustrating and scary that he couldn’t tell me what he needed. The worst part during those days were, when I noticed a tear slip from his closed eyes, indicating that he was in pain. Of course, a nurse would rush in, adjust his medication and the tears would dry up, but those moments just broke my heart. Then, as they were waking him up, but he still had the respirator tube in his throat, the Dr.’s asked me to call to him quietly. I had my finger laid inside his tiny little palm. When I said, “Avery my luv?” he squeezed my finger!
That moment is one of the greatest moments of my life. I knew he was still with me, he was still my boy. That’s the first time I felt hope, that we could possibly get thru this. I remember thinking, “Ok, we can put on our boots and fight this now.”
The thing I learned about being a mom/caretaker that day, was that our expectations had to become more reasonable, within reach and we needed to cling to hope. I had to break hope down into smaller pieces. To survive day by day, you have to look at the little things that you hope you can overcome. The tiny steps that need to be made to get thru the big hurdles. While at the same time, trying to avoid the painful false hope. I remember asking the Dr.’s over and over, “Will he make it?” They replied wisely with, “He’s doing ok today.” They knew better than to give me false hope. Even though that response was not what I wanted to hear. I wanted to hear, “Yes he’s going to be alright, everything will be alright.” Instead, they gave me the honest answer, along with the positive, of what’s happening right now. Which, I appreciated and learned from.
Even now, when he’s a grown man we keep our hopes and expectations realistic and reachable. For instance, we wish we could make all of his health problems just go away, but of course that’s not realistic. Instead, we focus on what we hope to accomplish in order to make it easier for him to cope with, the conditions he lives with. Right now, we are reaching the goal we had hoped we could accomplish, creating an apartment for him to live independently in. It’s so exciting to see him enjoying the process of getting his apartment finished. It’s very satisfying to accomplish what you’ve been working for, and it turns out to, more than meet your expectations. Hope is a very valuable tool. I’m very grateful for the moments that gave me hope.