Sometimes I feel guilty that my son misses out on things on my account. I feel bad I can’t participate in all the things I want to. I don’t like saying, “Mommy can’t” but sometimes I have to. I have a genetic condition that makes my joints unstable and prone to dislocation, saps my energy and all around makes life more difficult than it needs to be. Some days I feel like my kid drew the short straw when he ended up with me but I’m trying to remember that he does have some benefits in all this mess.
He’s learning about empathy. I try to be real in an age-appropriate way when things are difficult because I want him to understand that people with disabilities face real barriers and challenges. I don’t want him to think “Well, Mommy figured it out. Why can’t they?”
He’s learning about self-compassion. I model it for him as best I can on days when I just can’t do the thing I wanted to do. I try not to beat myself up for not reaching whatever goal that was not attainable for whatever legitimate reason.
He’s learning about perseverance. I feel like the hand I was dealt was crappy but I’m still here building a business, a strong personal brand and warm, supportive relationships with family and friends. I’m still here. I’m not going anywhere. This condition might cause me to lose some daily battles, but I intend to endure.
He’s learning about respecting your body. I get the whole “Don’t let this stop you” sentiment of pushing past, but that really does need to be balanced with respecting legitimate physical limitations and prioritizing energy expenditures. There are going to be times where it’s “Yes, maybe I could, but at what cost? If I do this big hard thing today, I won’t get to do the fun amazing thing I wanted to do tomorrow, so I’m going to save my ‘spoons’ for that.”
He’s learning disability isn’t the end of joy. I’m not joyful every damn day. Who is? But I want him to know that even though some days life sucks, there is still joy. There is still room for happy. There is still love and connection and vibrancy and a life worth living. I need for him to know that so if he faces illness or injury, he knows life isn’t over.
There are lots of things I would love to give my son that due to my condition I just can’t. But living this life alongside me, I know I can give him resiliency, hope and a window that lets light in even on the darkest days. “Mommy can’t” do a lot of things – but these things, Mommy can.