There are reasons this site is called Wheel Life Adventures.
Our girls haven’t sat still a day in their lives. They were born feisty and stayed that way. Some people like to say it has worked to their benefit. It has certainly kept us on our toes…and on the move.
First, some background.
The girls have cerebral palsy as a result of prematurity. They were born at 30 weeks and struggled to breathe with immature lungs. The lack of oxygen to the outermost parts of their brains caused the loss of those cells. That can result in varying types and degrees of cerebral palsy. The fact that they are twins did not cause the similar cerebral palsy. In fact, doctors were surprised how similar they stayed as they developed. While they are not exactly the same, they do have a lot in common. I am not sure which was harder for us to swallow, the loss of motor coordination (they both drive power wheelchairs) or the slowly revealed struggle to read and write.
Obviously there is a whole lot more to their stories, but the current status is that our girls like to have plans, plans, PLANS. They soon recognized that tv shows and movies are often ways that people attempt to entertain them, without interaction. These two love interaction. Without reading or writing to keep busy, our girls are always on the hunt for activities, trips, visits…places to go and people to see.
We keep calendars and white boards EVERYWHERE. An empty square brings ensuing panic. Seriously. Panic.
With that background in mind, I was in denial about the approaching quarantine for the Coronavirus as long as I could be. I began to cancel some of their volunteer and day program plans because “they would never survive 14 days at home if exposed”. Little did I know then that soon we would all be at home…for longer than 14 days. How funny that all seems now.
Our calendar changed dramatically the middle of March as one by one things were erased. We have a new normal.
So far I’m glad to report that things have gone smoother than I expected. They have surrendered to the reality that all the shops, movies, bowling, restaurants, church and even friends/family homes are closed. Doesn’t mean we are happy about it. We can feel sad and disappointed, we just can’t stay in that space. We have tried to be creative in our plans. At the beginning of this new life, we decided we would have a chore, walk outside, and drive each day to break up our days inside. We know now that we even need to be flexible with that…each day has brought more suggestions, rules, and regulations from our county and state. You need to stay updated on your location, too.
First thing we did was create a list. Somehow this has made life feel a little more predictable.
No doubt most of you have, too. Our whiteboards and calendars are being used a little differently than in the past. For US, it means having a list of things to get done around the house. Somehow the idea of organizing a closet or room feels purposeful during this time of unending time. It gives us something to check off. We are making progress.
We also added Menu ideas for lunch because the first day we acted like deer in headlights when tummies were growling. It was as if lunch was a whole new concept for us!! good grief. (Misplaced panic??)We have used it to keep a running list of places to go, people who have invited us to Facetime and Zoom, funny things to try and games to make up.
Week one is down and we survived with our senses intact. Here are some of the things that gave us purpose and focus:
*We have managed to redo a couple closets and add to our box for giveaways. (Me along with everyone’s uncle.)
I am guessing that the thrift stores are going to be brimming with gems by summer’s end! We used the organized toy closet to drop off a bag of “something new to play with” on the porch of a quarantined family. We found some forgotten hand sanitizers in the way backs of a closet and pockets of backpacks. Those were donated to a local foundation that serves families affected by childhood cancer.
*We wanted to get our thoughts off of our disappointments and continue some of things the girls already do in their routines.
The girls volunteer at several retirement homes through a transition program at their school. They like to deliver things to the residents, like water refills and mail. They also pack things into bags for other foundations. With that in mind, we bought bags at a store the first day, before things were closed. We also picked up vitamin C drops and hard candies. The girls have been packing them in the bags. We ordered more candies and individual tissue packets online, but unfortunately they are behind with deliveries. Once they arrive, we will add hand made cards (another project we will start). It is hard to say what we will be permitted to do with the baggies as rules continue to change, but we are hoping to leave them on doors and porches at some point. That will give us another purposeful drive.
*We delivered Meals on Wheels in our community.
We read that many of the Meals on Wheels’ drivers are retirees…those that are especially at risk. Obviously we needed to stay safe as well. Last week we felt like we could safely go to make the deliveries in the van. I was the navigator and a friend donned the provided gloves and hand sanitizer to take the meals to the doors. The girls’ jobs were to remind our friend “hot meal, cold meal, and milk” at each stop. Then they said a prayer of blessing for each person by name and their meal as the food was taken in. We LOVED the time of navigating neighborhoods we weren’t familiar with, feeling purpose, and getting a few sweet waves through the windows.
The meal delivery is a volunteer job we hope to return to in the future. While things have become unsafe to continue for now, we plan to apply to volunteer more with that neat organization! It met the criteria for us of getting out and about while serving others. Such a neat thing to see how this time of yuckiness can bring some new opportunities for the girls down the road!
*Another safe way we got out and about was to play a driving game with Dad.
As much as I’d like to lay around and watch movies, I already shared that the girls are not very tolerant of those times. But since we aren’t supposed to be out in the public, where to exactly do we drive?
We decided to play the “left/right” game. Basically we chose upcoming intersections to announce, “which way? Left, right, or straight?”. They took turns and the more country roads we discovered the funnier they found it. It kept us intrigued as well! Wanna know where we landed? A chocolate factory parking lot. I kid you not. It smelled like fresh baked brownies!! How in the world does that neighborhood live like that?? I felt such a need for chocolate! We high-tailed it towards home and stopped for a take-out pizza instead. They requested we do another drive like that today!
*While we go out driving we often stop to get some fresh air and exercise.
I’ll be honest, it has been hard for me to follow what is and isn’t allowed as far as walking outside during this “stay home” order. Although we live in a suburban/rural area, we don’t want to go to parks that have groups of people (social distancing!) or signs saying they are closed. We DO need fresh air, Vitamin D from sunshine, and paved accessible paths, though. I recently stumbled upon the idea of walking parking lots at closed churches and their…graveyards. Yeah, yeah, not everyone finds the idea acceptable.
So hear me out. The churches are plenty around here. They are empty. They are paved and the cemeteries typically have a paved walking path. We have used the time as sort of a history lesson. We look for the oldest stone. The name we think is cool…or the name we are glad we don’t have. ha. (Sorry, Hester.) Ci has enjoyed making some sort of obstacle course to follow in the parking lot or around the church building and likes us to use our stopwatch app. Lots of laughter!
*We worked at their small glazed mug craft business.
A few years back the girls began to promote small batch coffee roasted by others with developmental disabilities. While they felt pride in having a part in that, they wanted something more hands on. So we began glazing mugs with the assistance of an artist friend. They love making these but with the busyness of school and unified sports, we can’t make enough to keep them in stock. When school was cancelled I placed a new order for mugs and glazes. Today was the first of potentially many days to begin our new stock!
*We are taking time to work on therapy skills we usually rush over.
The girls have spent more time in their walkers and standers than they have in years. There is time to just work at sitting unsupported. There is time for massage therapy, both professional and personal. Just today we discovered that having an open top cup to practice drinking without a straw or lid can provide a good amount of entertainment. And if it gets spilled, no big deal. Plenty of time to clean up!
I don’t expect our life to return to the previous normal for quite awhile.
So I suppose we will continue to add to our list. I would LOVE to hear what your are doing to stay entertained. What is on your list? What was a success…what was a flop? Please add any and all ideas in the comments HERE on this post so we can all share ideas.
As this week ends I hope to update you on more ways we stayed busy, too!
It is good to stay busy…and away from the scissor… and our hair.