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How different generations living with SMA can teach one another

Meet Regina and Al. Their friendship and respect for one another all started at a fundraiser before a Phillies baseball game in 2019. “I watched Regina give a beautiful speech at the event about her recently diagnosed son, Shane,” recalled Al. “I thought to myself, ‘My friends at Cure SMA need to meet this amazing mom and get her involved.’”


This topic has 1 reply, 1 voice, and was last updated 4 weeks ago by Alyssa Silva.

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    • #24187
      DeAnn R
      Keymaster

      Lately I feel a lot of discontent. Probably most of it has to do with the current situation. Not only have I been in “hibernation” since November, I have to weigh the risk of every action. Also, some of it has to do with my physical limitations. There are so many things that I would do if I could. Despite those feelings I’m trying to look past what I can’t do, focus on what I can and learn to be content with where I’m at.

      Over the 4th so many friends and family members had gatherings. I don’t feel comfortable with this so didn’t partake. Mom and I did decide to take a risk though going to small shop and an outdoor greenhouse, wearing our masks of course. Thankfully it wasn’t busy, most of the people in the shop also had masks and I kept my distance. We enjoyed watching random fireworks and the fireflies from the comfort of Mom’s porch. Someone across the lake puts on quite a show. Not the conventional 4th of July celebration, but we made the best of it.

      My backyard is my sanctuary. If I could weed the flowers and water my plants they would be so much happier. Luckily my caregivers know how important my space is, so they help where they can. Still, I have to look past the random weeds and wilted plants that didn’t get enough water. At least there’s not snow on the ground right?

      Even though I know I’ll never be able to do everything I want to on my own, I keep moving forward. Some steps I’m taking in the long run will help me maintain my independence. I’ve started the process for a new wheelchair. Officially I’m on the waiting list for a successor service dog. Not only that I’m checking into a JACO. After a lot of debate I decided these would all be complimentary. Will it work out? I don’t know yet, but I’ll keep you posted. In the meantime I can try to be content knowing I’m doing what I can to lead my best life.

      What things do you do to feel content?

    • #24230
      Alyssa Silva
      Keymaster

      I’m sorry you’re feeling this way but know you’re not alone in this, my friend. Spending time outside (like I am right now!) helps my mood tremendously. I also have picked up new hobbies in quarantine… you know, like the things you always used to say you’ll do but then never got around to it… those types of things! It has been bringing me a lot of joy to bottle up these days. I’ve also been redecorating my bedroom and will soon move on to my office. I just finished the front and back porches where I have my socially distant hangouts with friends. I’ve been busy, which I know is just a coping mechanism for how I feel, but it has been getting me by.

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