My son has been blind from an early age. Fortunately, Ben is very independent, healthy and mobile, though he carries a cane for support. He and his brother Chris have been my life; I raised them as a single mother, managing well through so many challenges.
Over the years, I had often looked for support to make sure we had the resources to manage his and our needs. But the three of us had a wonderful network and seemed to make our schedules work with appointments, errands and even travel for the business I was building.
Tragically, we lost Chris in a devastating accident a few years ago. We were back in crisis again. I had lost my emotional and physical support and we hit a tipping point for both of us. I knew we needed help quickly. Fortunately, a financial advisor saw that we were struggling and introduced me to Mindy at PyxisCare.
I didn’t have anything left to give and was afraid that I would miss something or make a poor decision for him. How can a person advocate for their child if they don’t know the rules?
This was what I had been looking for, for many, many years. Everyone was worried about me, but they couldn’t see what I saw – that Ben was suffering too, and wasn’t getting what he needed. I was frightened for Ben. I didn’t have anything left to give and was afraid that I would miss something or make a poor decision for him. How can a person advocate for their child if they don’t know the rules?
“Holding it together” is not the same thing as ongoing and structured support. There were so many things I had given up on in our lives; I didn’t even know what resources were out there. PyxisCare created a plan for us to both gain independence and better emotional and physical health.
I’d say the most fascinating part for me was the initial assessment. It takes you out of your comfort zone, but you look at everything differently from that point. It helps to have someone come in and physically review how you’re living with your challenges.
The most comforting piece is having other qualified adults working with me. I trust our care coordinator and she is always a phone call or email away. She even found apps that have helped Ben and me communicate and manage his needs!
I’d say the most fascinating part for me was the initial assessment. It takes you out of your comfort zone, but you look at everything differently from that point.
At one point, we had an independently contracted home heath service that was not keeping up with our wishes. PyxisCare intervened and was able to change our staffing, so we now have a person that we like and trust with him, when necessary.
I will never forget how it felt to be out of control and without a place to turn for real help. It hurt and I was overwhelmed all the time. I felt so much guilt for having to work while I was supposed to be looking after my child. There was a long time when we didn’t laugh.
But everything is lighter now, and so good for both of us. I can travel and he has meaningful work and reliable support. Having a plan, resources and support has changed our relationship for the better.