love

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?

Today, I took my 25-year-old adult daughter to the OB-GYNS office. I had been dreading this moment for the last 15 years. While nothing major happened, it’s just another thing in a long line of “firsts.” Think how you’d feel taking your daughter with the mental capacity of an 8-year-old to an OB-GYN. Not something that sounds fun. However, we saw a lovely nurse practitioner and started a path of what to do for birth control that will best meet the needs of Phoebe. The last year has been all about getting a life situated for her, so that someone else can handle what she needs. A life that would go on without me being by her side all the time. This is the beginning.

Trust me when I say, I have avoided doing any of these because of the stress it causes Phoebe and I. We have had no less than 15 appointments in the last 6 months. I have advocated for weight loss medication, PCOS testing, bloodwork, med changes, and working on a nutritionist as we speak. Anything out of her typical day and she is undone. Over the years, I have learned how to get her ready, but there is always that sense of “anything can and will happen” while we are there. Today, she did fairly well and I was proud of how far she has come at these unknowns. The only time I really laughed was when Phoebe asked the nurse when her brother needed to come to the OB, and she said, “Never, because boys don’t have babies.” Phoebe said, “Yeah, that’s not fair.”

I’m not going to lie…being 53, and trying to manage all this is not easy. Menopause fog is a real thing, and I have never made so many lists in my whole life. Thank goodness I have the summer off, because I can’t do much else when I’m teaching art. The struggle is real. My brain and mouth are on 2 separate planets, and can’t seem to get their shit together.

This next year there I’m hoping there will be many more “firsts” for both Phoebe and I. She deserves a life of her own, and getting to do the things she loves. I’m also looking forward to discovering what my life should look like, and maybe having a few moments of down time. Whatever that is.

For now, I have to go make a list of what to do next.

Phoebe ASD World

Who am I?

Firsts