Today we will keep exploring Arthrogryposis and what my life looks like / doesn’t look like in the day-to-day. Your questions covered a lot and this is Part Two of the series. (If you missed part one, you can read it here.) I’ll also be sharing a Part Three next Tuesday to answer the remaining questions.
What’s a normal day look like for you?
Well, I wake up at 7. My dad comes in my room to take my breathing machine mask off, wash my face, and give me some water. I’ll lay there for a minute and ponder the day before me. Do I want to shower or go ahead and get up? My mom will help me get dressed and ready or we get clothes out and start breakfast while I wait for my personal care attendant (PCA) to arrive around 8. She comes most days and stays until lunch time. She knows our routine. She knows how to help me shower, bathroom, eat, fix my hair, do tasks in my room, run errands, etc. She knows what I like and don’t like. And one of my favorites — she will gladly go to Panera with me so I can stand at my little table and write until I’m ready to go back home.
My afternoons feel a bit more flexible. I can work on whatever projects are on my current to-do lists (work or pleasure). Or my mom and I can take care of out-of-town errands, doctor appointments, or plan some family fun. This is also a time for getting together with friends or simply enjoying the quiet space. I love and need alone time more than I used to. I value the afternoons when I can hang out in my room and just know that mom is nearby when I need help with eating, using the bathroom, or moving to the den to take a break and lay on the couch.
Laying on the couch may sound like an odd thing to you, especially if it doesn’t include a nap. I rarely take naps, but I have time on the couch every day and more than once. I actually stand up to do most of my work. I have a desk in my room that was built by some local woodworkers after I gave him my drawing and specifications. This makes it easy for me to reach my computer, my papers and pen, any books or journals that we leave sitting out…I have a few piles on my desk for this reason. I like being able to reach some things without asking someone to hand me every little item. I can go for a short time without needing hands-on help…until it’s time to give my feet and legs a break or I have to use the bathroom again.
In the evenings, my dad comes home from work and we have dinner. Somewhere in between, I help my mom with meal planning and grocery shopping. I have to actively do my part because I’m the one with food intolerances, which hasn’t always been the case. But this has provided me with a different kind of independence. I wish I could do the cooking myself and save my mom the effort many days. Apparently I’ve awakened another passion in the process of living out the day-to-day. Now I love experimenting with foods, combining different flavors, and just being a part of what happens in the kitchen.
At night, if I’m not going anywhere or meeting up with friends, I might do a little writing or pull out a sewing project before I rest on the couch again and prepare for bed. My mom will help me with the teeth-brushing, face-washing, and one last trip to the bathroom. Then we call my dad from the other room to do what I like to call “throw me on the bed”. We also have to put my breathing machine mask back on for the night. Then mom removes my shoes, AFOs, and socks. And she adds any blankets and turns the lights out. Most nights I don’t have to call for any help. So we can all rest until we start the routine over the next day.
What are the daily challenges? The daily victories?
Some might think needing help with the tasks of daily living is a challenge and it could be. But that’s the part I’m so used to. It rarely bothers me to ask for help. It is a fact of my life.
What I see as a daily challenge is more internal. I can wrestle with questions.
How do I balance my need for others with my desire for independence?
What are my boundaries as a young adult living with her parents?
How can I use any of my fears or worries to push me to take action today?
I don’t always have answers to any of these. A lot of times I have to let go of the questions and be okay with resting in the unknown. I have to remember God knows tomorrow and all the days to follow.
The daily victory comes when I can focus on the present, this day right in front of me. There is a kind of victory when my fears point me back to a daily trust in God. And victory happens as my dependence on others each day reflects and emphasizes my dependence on Jesus. We can’t go through this life alone. We all need someone. I just don’t get a choice of what day(s) I need someone because my answer is every day.
The exact thing that can be a daily challenge is the exact thing God can use to show me victory.
Part Three will be next Tuesday. Thanks again for joining me, friends.