For 26 years, I have been the primary caregiver to my daughter. Some kids hang around home for a while. However, most of them don’t require the same amount of care that mine did. While it wasn’t always super hard, most of it was. Navigating her education and health took up a majority of her young life, but that was only a small part. Living with someone who is cognitively low, behaviorally challenging, and can’t take care of their general needs is exhausting. It’s also very time consuming. Someone has to be taking care of her at all times. There is no “down-time”, unless someone else has her. Recently, big changes have been made.

Phoebe and a friend moved in to a home with various caregivers. These caregivers are saints. They are enduring the behaviors, and the ups and the downs of it all. All the things her friend’s mom and I have done for so long. The friend’s mom manages schedule of caregivers, and we are constantly talking and rearranging things. Both girls need care 24/7. We know there are going to be bumps in the road, and eventually things may (or may not) get easier. We both see the girls often and do what we can to make the transition smooth. I worry constantly about her and her life.

As for me, I have been wondering what to do with my life. For the last 26 years, I have been this person, and now I am someone else. I will always be caring for her and navigating, but the 24/7 is gone. Someone once told my mom, “It’s like the anchor is gone that kept you in one place. Without the anchor, you’re just swimming around aimlessly.” My daily life has completely changed, and I don’t even know what to do. I haven’t played a sport, or done much exercise. I don’t have any hobbies like gardening, art (outside of school), reading, or any great passions.

This new era is hard when you’re 54 years old. Yes, 54. One day I was 35, and the next day I’m 54. My adult life has been all about her and her life. What can I do to make her life better? How do I make sure she’s alright and happy? Now, I think I’ve got her there…what about me? This new part of my life is weird. I’m not sure what I like or what to even talk about??? I guess I need to start this process and figure these things out.

Writing? Art? Traveling?

Who Am I?