Thursday, September 24, 2020

Hate is a strong word. Sigh.

"I hate this thing."

Benjamin and I were in the middle of his evening routine last night, when the words flew right out of my mouth. He was in the sling seat for his lift, but I had made some error that was allowing the sling to pinch his leg and other areas that cause considerable discomfort. I thought my frustration was with the fact that one year into this system, I can STILL have nights where I do something wrong.

Benjamin: "See what I mean."

And that was the cold water in my face I needed to realize how grateful I actually am for this system and so I attempted to correct myself:

"I mean. I mean, I just wish it were more user-friendly and that I didn't cause you pain when I am trying to help."

Benjamin: "You mean you hate that you need it. And you hate that I need you to need it."

Yea. Yea that.

For years I have stubbornly lifted Benjamin whenever he needed lifted. I lift him still when he needs to get from his bed to his wheelchair and back again. But the distance to his bathroom is further and so in an effort to maintain my health and keep him safe, we use the lift.

I am so grateful for the luxury of this means to meeting Benjamin's needs. Really, I am so grateful. But it isn't the easiest thing to use. At least, late at night when we are both tired and ready for bed, it isn't the easiest thing to use. And in my impatience with myself last night, I let my frustration spill out. I don't really hate the lift. Quite the opposite in fact -- it frees us up to hire personal care attendants without requiring them to be able to lift 125 lbs, it ensures that Benjamin is safely lifted from point A to point B, and because of that it alleviates a ton of anxiety for both of us! I do not hate the lift. 

But Benjamin is right. I do hate that I can't trust myself to forever do the lifting for him. And as wonderful as I KNOW he is, and as perfect as I believe him to be, I DO in fact have days where the grief of his cerebral palsy still chokes me. And so I have days where for his sake, I DO hate that he needs the lift.

Wade and I should be at the American Academy of Cerebral Palsy and Developmental Medicine this week surrounded by our amazing friends and researchers who are striving, studying, teaching in an effort to make the world better and brighter for my boys. Instead, the meeting is virtual so our talks have been recorded and are being viewed remotely all around the country. Wade has a ton of talks -- I am beaming with pride! And he and I led one on Caregiver Stress (along with the amazing Carrie Sewell Roberts!). But together, the entire Shrader family was part of a panel for the Community Forum that usually is held alongside the Academy. And if we can make lemonade out of the lemons of this pandemic, this year's entire Family Forum is being offered online to anyone who wants to click the link !! I am thrilled to be able to share! And don't think you even have to listen to the Shraders, this link is filled with amazing people who are true experts in the field of CP!

One of the questions presented to our panel was from a fellow mom on this journey, who asked how she can know when she has reached burn out. I tried to remind myself of my answer last night as I was feeling guilt over my reaction to that blasted sling:  "Really, you should assume at all times that you are stressed out. And with that stress in mind, give yourself grace."

I hope you will join in and listen!

You can click here for Community Forum!

Carol - The Blessings Counter