Thank you all for the positive feedback I got yesterday with regards to starting up my blog again. It's good to know that you don't mind reading my incoherent babbling, and maybe even missed it a little bit. There are so many topics that I want to talk about, it's hard for me to narrow it down to just one thing right now. You know the phrase, "6 Degrees of Kevin Bacon (separation)"? :) How it theorizes that everyone is connected to one another with 6 or fewer social connections? It's a cool concept; it always seems like I am saying, 'wow. what a small world!' Especially in the age of social media. Looking at your friend's friends list. Oh, hey, we have this mutual friend in common. How do you know him/her? Anyway, that's how I feel when I think about autism. There are so many comorbid diseases and disorders that go hand in hand with autism. Sometimes they appear during puberty, other times because of an infection, and sometimes they just appear out of the blue. So, in my mind, it makes sense that the universal symbol for autism is a puzzle piece. There are so many sides to each piece of a puzzle.
I love a good puzzle. I just wish I could get one of those cool puzzle coffee tables. Have you seen them? You can lay out all of your puzzle pieces, or put some of them in pull out drawer, and push them out of the way for awhile. Then when you are finished for the day, there are 2 hinged wood pieces that fold over and cover the puzzle up until you are ready to try it again. Puzzles to me are highly frustrating and super satisfying at the same time. How do you put your puzzles together? I like to start with the outside and get a good solid frame together. Then I try to group like pieces together, like colors, like sizes.... I love the easy pieces you can just eyeball. The ones where maybe there's a face or some writing that you can just click together without even thinking. Once the easy things are done, I usually sit and stare at the puzzle for what seems like forever. I'll take a piece and flip it every which way, convinced that it belongs there. And man, it looks like it almost fits, but then it doesn't. And then there's another piece that is just a tad bit different, and that doesn't fit either. By this time I am usually swearing. And getting pretty grumpy. I have to stand up and move around a bit. Sit in a different chair, because things look different from different angles. Eventually, I finish the puzzle, but I always have help doing it. Probably because it sits on my kitchen table, and we can't really eat there, or do anything there until the puzzle is completed. Mark is really good at puzzles. He's an engineer, so there's that. He has so much patience. He will keep at it far longer than I can sit still for. Joe will swing by the table and nonchalantly find a piece randomly that I've been looking for for a long time. Ally will come out and work through it tediously, and sit by me and chat while I am working on it. And that stinker always shows up when there are only 2 or 3 pieces left to put in.{I will talk about Vicki and how she puts puzzles together tomorrow. It's utterly fascinating.}Sometimes we all sit at the table together. Sometimes we prefer to work at it alone. See where I am going with this?
Puzzles are hard. Puzzles can be frustrating. Puzzles force us to think about how things are connected. Puzzles force us to work together. And puzzles can be extremely satisfying. I will say, however, that one of the most frustrating things about a puzzle, is the chance that you are missing the last piece. Oh, the horror! I'm joking, well, kind of, but doesn't it just make you so mad? Did I drop it? Cue searching the floor with a flashlight for hours. Did the dog eat it? Or, did it just not come with that piece? Ugh, what was the point of doing the puzzle in the first place if it doesn't all fit together like a perfect picture? But, oh, when you finish a particularly difficult puzzle that took a really long time... don't you just want to look at it forever? Heck, we've mod-podged them and framed a few that we were really proud of.
I would be lying if I said that I didn't experience every one of those above-mentioned feelings over the years as we've puzzled our way through the world of autism, the world of Vicki. It can be hard. It can be frustrating. Sometimes I feel like I am alone. Many times I've had to take a step back and look at things from a different perspective. Sometimes it seems like nothing will fit together. I cry. I get mad at myself. But, man, the satisfaction. The joy. The unity that it brings. The beauty. It's all there too. And every piece, every single piece we put together is a triumph. We celebrate it all. And the cool part to me.... is that every time we put a puzzle together, we are always willing and excited to do a new puzzle. No matter if we rip that old puzzle apart, or if we hang it on the wall. We buy new, harder puzzles. More complex. And many times we will put the old puzzles together, again and again.
Many times you can find me sitting at my desk in front of the computer in the middle of the night, looking at a document that I created a few years ago. A complex medical document full of information on Vicki: her history, her doctors, her lab work, her x-rays, her EEG's, her MRI's, her ER visits, her hospitalizations, her sleep studies, her endoscopy results, her seizures, her medicines...... you get the picture. She has seen so many specialists over the years, and so many new ones that we have yet to schedule. Sifting through all of the results, and sharing information with everyone who needs to know, is a full-time job. At every doctor appointment, every school IEP, every new assessment, you can find me wearing my green paisley backpack with my binder tucked safely inside of it. I made a pretty cover, have the pages in page protectors, and even created a table of contents so I can easily find the answer to 'when did this happen?'. Currently, it is 78 pages long. It's my puzzle in written form. But that binder, it in no way sums up Vicki. Vicki is so much more than that complex sea of written words and numbers and results. Vicki is our everything. She is the beautiful picture on the front of that puzzle box that you just can't wait to enjoy. You have to savor that picture and look at it constantly. Enjoy it for what it is. Marvel at the beauty of it. At the uniqueness of it. At the completeness of it. Because even though the puzzle pieces may be fragmented, it's all there. You just have to be willing to spend the time and have the patience and the dedication to work on that puzzle, piece by piece, every day. It is so worth it all.
When I started writing today, I had really meant to talk about how everything is connected. How autism doesn't stand alone, not with Vicki, and not with many families that deal with the diagnosis of autism. But, my ramblings kind of got away from me. Sorry. :) Some days I yearn for the distant memory of just a plain ole autism diagnosis. Was that easy? No. But, just when you think you put that 500 piece puzzle together, you find a 1,000 piece one. Hey, here's a piece of the puzzle called epilepsy. Check. Here's another one called every possible GI issue you could have. Reflux. Check. Constipation. Check. Diarrhea. Check. All of the above all at the same time. Check. Here's PANDAs. Oh man. Check. Now for a particularly difficult piece, OCD and crippling anxiety. Check. Incontenence. Check. Sleep disorder. Check. Trichitellomania. Check. Scoliosis. Check. Random broken leg that took over 6 months to start healing. Check. New meds. Check. If you all have any specific questions about any of the above puzzle pieces, please feel free to reach out. I'm going to try to talk in detail about some of the more difficult aspects of our current puzzle that we are working on.
I hope that by reading this blog, you don't just feel like you wasted 10 minutes reading a bunch of nonsense, but that you can relate to it. That even though you might not be connected to one piece of the puzzle, maybe you can relate to another. Or know someone who knows someone that can. Maybe you learn a bit more about our family, or about specific disorders. I hope so. And I hope it helps you as you put together your own puzzles on a daily basis. Everyone has a puzzle sitting out on their kitchen table. And so often, that sky in one particular puzzle has what seems to be a zillion different shades of blue. Take a breathe and keep working at it. Ask for help when it gets to be too much. Or be that help to someone else's puzzle. Take the time to sit down beside them and just listen to them swear at the puzzle. Offer to be a distraction. Trade seats for a second. But never stop working on it. Much love to you all. xoxo
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