The other day I was reading an article written by a mom about the effect of social media on our perceptions of one another. In gist, she talked about how we tend to just put up the best part of our lives for people to “like” and comment on. I took some time to look at my Facebook account and it was filled with pictures of adorable kids, people checking in at fun places, pictures of exciting outings and funny meme’s. I only had one friend who had a “keeping it real” post. Not that I don’t like seeing all those posts, I put them up too. It just made me start to wonder about the importance of “keeping up with the Jones’” vs. what our lives are really like. So I decided this post would be about the reality of the Klim’s. What’s it really like behind all those adorable pictures of Jackson? Let me tell you….
Jackson is now 7 (he’ll be 8 in two months), weighs about 95 pounds, comes up to my chin when he is standing, and is freakishly strong and getting stronger every day. He is still in diapers and can’t assist much with dressing. So that means for nearly 8 years I have been changing diapers and dressing him. Truth? I’m sick of it. Honestly? There is no end in sight. It’s fun when they are babies to dress them up and change their tiny little diapers. It’s not fun when they are in elementary school. There isn’t much I can do about it though so I just keep on keeping on. That’s not to say there are days where I get so frustrated trying to dress him that I have to walk away from him. Or when he has had a giant explosion in his diaper that has leaked down his legs and up his back and I yell “I’m so sick of shit!”
Those cute pictures of Jackson where he is looking at the camera and smiling? Ha! Those take forever to get!! Sometimes I only have to snap a couple of pictures and I get a good one. Other times we take 30 pictures before we get a good one or I give up. An example - For years all I have wanted is to have some nice pictures of my little family taken at the beach when we go to Florida. A picture or two of us all looking at the camera, at the same time, smiling, looking good. I was determined at Christmas to get one. I had a plan. We headed to the beach and I set up the camera so it would capture us on the beach with the ocean in the background. I set the timer and “click”, our first picture. Jackson was leaning to the side, so Kevin (who was holding him) was leaning to the side. I was leaning to the side because Kevin was next to me and Sylvia was leaning to the side because she was next to Jackson. The picture looked like we were being blown away. So we tried sitting. Jackson sitting in the sand isn’t the best idea. He thinks its food. After numerous attempts to get a picture where Jackson was looking at the camera and not reaching for the sand, we gave up. By that point everyone was annoyed by my picture taking attempts and Jackson’s eating sand attempts. We got a couple of pics that turned out ok but Jackson’s head was always down. So the next time you see a cute picture of Jackson posted on Facebook, be thankful. I know I am.
Jackson is smart and capable at school and at therapies, but at home he won’t let on that he is. He won’t use his communication device (Dynavox), he won’t work on words, numbers, colors, reading or anything academic with me. As a former teacher, it’s incredibly frustrating. He will fight me to the end before he does any kind of “work” at home. It would be so helpful if he would use his Dynavox to let us know what he wants. Instead he will either go over to what he wants or just yell until I figure it out. And if you know Jackson, you know he has a good set of lungs on him. He doesn’t make it easy, or esthetically pleasing.
Moving Jackson around has become increasingly difficult. He walks on his knees so he is mobile once he is inside. But getting him inside, and outside, is really hard. We live in a split level so there are stairs to our main floor. He does pretty well going up the stairs with assistance, but to get down the stairs we have to carry him. It’s incredibly tough. Getting him in and out of his wheelchair and loading him in the car is another difficult task. He doesn’t really help with transfers and often times will fight me. Lifting him in and out of the bathtub is even worse (he’s wet and slippery). Needless to say all of this moving Jackson around has taken a physical toll on me. I live with a good deal of back pain. I visit the chiropractor regularly and get a massage here and there. Lately I’ve had a couple of instances where my back has given out on me. Not a fun feeling. Jackson is only getting bigger and heavier and I worry about how much longer I can handle him. One bright spot in this dilemma – we ordered a new minivan with a wheelchair ramp yesterday. We should have it in a couple of weeks. It will dramatically improve our lives when we are out and about. I can’t wait (and neither can my back)!
We also live in a constant state of unknown. Which can be really frustrating and sometimes really beautiful. We never know what Jackson is going to do, he is constantly surprising us. For example, last week Jackson went over to the kitchen table, grabbed his cup of water, took a drink, and put it back on the table without knocking it over or spilling. This may not sound too impressive to you, but to Sylvia and I (who witnessed it) it was cause for celebration. Typically here is what happens – Jackson will head over to his cup (which has a lid and a straw for drinking), grab for it, knock it over, spill some, finally get it in his hands, spill some on the floor, take a drink, throw the cup down on the floor and walk away. It’s a huge mess so if I see him heading for his cup I usually try to beat him so I can hand it to him. But that day, he did it perfectly. He may do it again tomorrow, or he might not do it again until summer. Who knows? No one. That is the constant state of unknown that exists for us.
The reality of our life is that even though there are so many hard things, there is also a joy that most people can’t understand. It’s a different kind that comes with a unique kid like Jackson as opposed to a neurotypical child. It can’t be put into words. Jackson’s laugh, smile, funny noises, sense of humor, manipulative behavior, sweetness and loving nature helps ease the tough things we have to deal with every day.
Being honest and open helps us take stock of our reality. La Rochefoucauld said “Some beautiful things are more dazzling when they are still imperfect than when they have been too perfectly crafted." Social media has given us a place to craft the vision of our lives we want to show to others. But behind that vision is real life and all the good, the bad, and the ugly that comes with it. Something the Klim’s have plenty of.