How I expected Evan's cast removal to go: Casts come off. Start standing day 1. Start walking with walker day 3-4. Start walking independently after a week. Post inspiring pictures and videos of Evan's progress.
How it actually went: Casts came off. (Why did nobody warn us this would actually be scary, traumatic and not that much fun?) Walking boots came on. We went home and tried to excite him about standing by counting how long he could go without holding on. Day 1 was about 30 seconds. He even cruised along the couch. I felt good about that. Things were going as planned.
After that, nothing happened. For about a week he regularly complained about foot pain and had to be forced to walk at all. I tried to be patient, but I expected progress every day, and some days didn't seem any better. 10 days after casts came off, Evan finally said his feet didn't hurt. He stood up after breakfast and said, "You're gonna like this," and then he up and started walking independently for the first time since surgery. I filmed him going across the entire kitchen, and cut the video right before he fell.
Since then he is back to complaining of pain and he hasn't wanted to walk anymore. He limps when he uses his walker, so I think there really is some pain, but he's also scared. "What if I fall?" I had to show him videos of when he first learned to walk. He would fall and stand right back up to try again. "That's what you'll do! You'll get right back up and keep trying!" He's not convinced. This conversation says a lot about our last 2 weeks:
Evan: What chores am I going to do?
Me: You're gonna practice walking.
Evan: No, but like when you pick 3 chores for me to do.
Me: I don't care about chores. I care about your walking.
Evan: I don't care about walking.
He's very content in his wheelchair and he's very uncomfortable walking. Probably the best thing our friends and family can do is to not ask when he's going to walk. I don't know. I just hope that one day he will. This was tonight and is pretty typical of his current ability.
Meanwhile... my new hobby is taking pictures of my sleeping baby.
He comes into my bed nearly every night and I don't usually notice until the morning. I don't entirely mind because he's so tiny and he's so cute when he's sleeping.
Isaiah and I have gone on a few one-on-ones with the children recently. First, Isaiah took Seth to Home Depot and out for a milkshake while Evan and I rode bikes to Big Horn and watched cars drive by. Then Isaiah took Evan golfing with Uncle Josh and I took Seth bowling.
Would you rather be in a wheelchair from birth or have experienced walking and then have to be in a wheelchair?
Sympathy cast for Maya
Weeks 2 and 3 of casts were really rainy. Only sorta inconvenient for the wheelchair, but super bad for casts. One afternoon, when the rain finally cleared, I took my crew on a walk around the block. About 1/4 mile from the house, an instantaneous rain/hail storm started out of nowhere. I rushed to take my jacket off and wrap it around Evan's casts. I threw Seth on top of Evan, and I ran with the wheelchair and two wet, crying boys all the way back home..at which point the rain completely stopped and the sun shone like nothing just happened.
Costco, Home Depot, and IKEA have been favorites for speed-wheeling freedom.
The expression behind his face is why Isaiah and I have so few pictures together
I better appreciate handicap parking now. I've used it plenty of times before, but now I feel like those spots are more sacred. At first, if all the handicap spots were taken at a store I thought, "I bet the people who parked there would feel badly if they knew how far away we had to park and then walk with the wheelchair." But then while Evan happily pushed his wheelchair through the parking lot and I easily walked beside him, I realized we actually have it pretty good and don't need those spots so badly after all.
Also, I've been very grateful for the storage space in our van. Transporting the wheelchair in our old car would have been a much bigger challenge.
Also, I'm happy that Evan is just small enough to fit in a cart when we go to "fancy" stores where I don't trust him to maneuver his wheelchair.
Evan and Grandma Hudson (and Seth is starting to catch on) have a tradition of "rockin' and talkin'" on Grandma's front porch when we go to visit.
Grandma Garrett (my mom) stayed with us last week. Her tradition with the boys is cookie making/decorating. We also made an effort to do activities that would hard for me to do alone. Duck pond, library story time, temple, kayaking, World of Wonders science museum, playground. I got to grocery shop alone and go on a date with my husband. At the end of the week she concluded that Evan is a rock star. He makes this whole experience easy.
The boys are obsessed with PJ Masks, so seeing geckos at the temple was a real treat.
We had only been at World of Wonders for a few minutes when one of the workers came up and started talking to us. He was in a wheelchair and seemed to take special interest in Evan, so he gave us the insider tour of the place, showing us things that most people didn't get to experience fully.
This swing got me thinking the most about accessibility. This is a wheelchair swing at an "accessible" park. Meaning, the park has ramps to go up to the top of the playground. Think about that...so my 5-year old struggles to push himself up a skinny hill only to get to the top platform where he blocks everyone else from going down the slides that there's no way he's able to go down. That's an accessible park, for you, my friends. But look--an accessible swing! Meaning, a swing that requires you to go to the community center to get a key to make the swing work. Only 5 people were on the list for checking out keys before me. Until Evan rode the swing I had never seen anyone use it. My playgroup friends were surprised when I said this was the only accessible park around, but I can see why a city would not consider increasing accessibility a priority when only 5 people have ever requested to ride the wheelchair swing.
Evan preferred the regular swing, anyway.
Accessibility is a tough issue. There's really a limited profile that would use a wheelchair swing. First, you need to be in a wheelchair. That, alone, cuts down the numbers tremendously. Next, you have to want to go on a swing... which likely means you're young. You would also not be able to get on a regular swing--either because you're too big to transfer or you lack trunk/arm control. We're down to the 5 people who have requested keys for the swing. And this is why there are not more accessible parks.
But how terrible for some people to be limited by an environment that lacks accessibility. Lacks equality, I guess you could say. Prior to this cast/wheelchair experience I would have argued that more often than not it's the person limiting themselves. I thought if they really wanted to be involved or participate in something then they would be able to. But it's been hard, even for 5 weeks, to think of activities where Evan could be equally involved as the rest of us. I've tried SO so hard to not say, "We can't do that because of your wheelchair," but it has not always been possible. And then I'm grateful that I can tell him, "We'll do that when you're not in your wheelchair anymore." And then I feel guilty that he gets to be done with his chair and some people don't. Ugh. It's tough.
After a month off-track, Evan started back at school. I felt guilty that I felt so relieved to have him gone. It only had a little to do with his wheelchair, though. Every time we reach the end of a month off I'm very ready for him to go back to school. I can't even imagine a 3-month summer break once he's on traditional schedule. The school district has been very wheelchair friendly. They only buy wheelchair-accessible buses so he didn't need to change drivers or anything, and his teacher is happy to work with him. I'd be interested in seeing how he actually gets around his school and classroom, but he says it's all good.
Seth and I have fun when Evan's gone, playing with latex balloons that Evan has to avoid due to his potential latex allergy.
Foot massages with my Seffy boy while Evan is at school
Easter was the sweetest. (no pun, intended) The Easter Bunny hid many eggs that were at Evan's crawling level, but some were high and some were far away. I was happy to assist in grabbing high up eggs that Evan would point out. Then Seth would run and grab two far away eggs and bring one to Evan and keep one for himself--without anyone even asking him! Such a sweetheart!
I have seen Seth's kindness towards Evan a lot lately. He is growing up learning compassion in such a unique way. I hope that never changes.
