I usually connect new experiences to old. This is how I understand "new" ideas. At one point, somewhere, I said that paraplegia is like a new baby. It is. We are getting used to the "new us". But unlike a new baby, this sucks. (well, ok, babies suck but in the good "I am getting nutrition" way and not the "this is very hard and we hate all the changes we have to make" way which is the way I mean when I say this sucks). So here is Paraplegia 101 for everyone.
1. We are on a schedule. Like having kids, everything is on a schedule. I mean EVERYTHING! So if we are out, we kind of need to be home no later than 8 pm. Ideally, we are home at 7. I have to be home because even though Jarrad is doing great, he still needs assistance with a few things that have to be taken care of.
2. Speaking of schedules, let's talk weight shifts. Sit up in your chair and really feel where your bottom connects to the chair. When we get uncomfortable, our body tells our head to move because it needs to change position. Jarrad no longer has that connection with his lower body. Instead, he has a timer that goes off and he has to "shift" his body so that his bones don't wear a hole through his skin. And yes, that is what would happen. Now, lean your chest as far forward to your knees as you can. Feel how the weight shifts off your tail bone? That is what Jarrad has to do about every hour. This prevents the aforementioned hole from occurring. When he gets stronger, he will be able to push up on his chair and hold his body up but for now, he leans forward for 2 minutes. DO NOT be alarmed if this happens. He has not fainted. It is simply a weight shift. He can keep talking and no one needs to weight on him to finish.
I did tell him not to do this in church, however, as I think it would alarms all the parishioners. Instead, he pushes up on his chair and holds it several times for as long as he can until he reaches 2 minutes. The first time he did it, I swear a couple of folks in the choir were getting ready to sing Hallelujah as it does look like he is getting ready to get out and walk. Again, just a weight shift.
3. Because everything is on a schedule, sleep is a little sporadic right now. I am assured that we will adjust. I hold on to that. But hey, sleep with kids is always iffy.
4. Spasms - Sometimes, Jarrad's body will shake or he will jerk back in his chair. This is a spasm. It is an effort for his lower body to connect with his brain. The signals travel but are not received and react because there is no outlet. It is a bit alarming and can happen at any time. It also hurts him. Do not be alarmed. Just be aware.
5. Don't help unless asked (or unless someone is looking around desperately or cries for help occur). PLEASE don't just come up and start pushing someone in a chair. It throws them off. And while offers of help to get in and out of the car are appreciated, we have a rhythm and unless you know what you are doing, you would just throw us off. Help by moving out of the way or opening a door as we are coming up.
6. Treat us the way you always have. If you made jokes at our expense, please don't stop. We certainly won't stop making fun of you! We are the same folks we always have been. Don't change something that you do simply because we can't. If you wrestle with the kids, it isn't going to hurt our feelings if you wrestle with ours just like you have always done. Jarrad can give them rides. Yeah, you may have to come to our house more often than we come to yours but less cleaning for you, right? And if you don't mind helping us bump up a few steps, we can come to yours too. If you don't know, just ask. There is nothing that you could ask that would be weird or insensitive.
Some things will change. Maybe we won't always have to be home around 7 every night. And Jarrad will learn to drive and how to adapt his brewery. He will learn to get on the floor and how to bump up steps. Just as we figure something out, it will change because he has. And maybe, this whole thing will be less "sucky".
Just do me a favor - no big crises, ok? Just for another 6- 12 months?
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