What’s Next? Where Do I Fit In?


What’s Next? Where Do I Fit In?

During Em's last days in the hospital, we were just waiting. Waiting for Emma to be able to eat. Waiting for her heart rate to come down to a reasonable place. Waiting to see if she would need TPN nutrition at home. Waiting for my husband to come with extra clothes. Waiting for the doctors. Waiting for the nurse. Waiting for lunch.

I started to feel very awkward.

Our daughter's been in the hospital before - a number of times. I told her she's been scaring the bejeezus out of me since before she was born. But this time, she wasn't a newborn. She wasn't 7 years old. She wasn't a teenager and we weren't several states away from home in Chicago. True, the hospital was way across town and the 15 miles, on the highway, could take anywhere from 30 minutes to 1 1/2 hrs, depending on traffic. With my Parkinson's, it can be exhausting to drive a lot. I certainly did better physically than I would have if I'd driven back and forth.

But those are just excuses. Honestly, I didn't even think about it. I've always stayed with her and I packed my bag automatically. It wasn't till we had been there a few days that I finally asked her if she minded that I was there. When I was 24, I wouldn't have wanted my mom anywhere near me. Fortunately, Emma just laughed. She didn't mind, it was nice to have company. I still felt awkward and uncomfortable being there. I try to reassure myself, if she had gone to the hospital that is half mile from our house (but not on her insurance), I would not have stayed. I don't know if that's true or not.

Coming home, I have the same dilemma. Emma lives at home because she's in college and can't afford the outrageous rent in the Denver area where a 1 bedroom apartment goes for anywhere between $1100/mo to over $3000/mo. But she's 24 years old. She has had some anxiety, including social anxiety. She doesn't like to make phone calls. But she's 24 years old!

Emma is recuperating well. In another week, she'll get her staples out of her incision. She's getting some energy back and eating. No TPN. Her next big task is to learn how to manage her health.

Where is my place? I don't want to intrude. In the hospital, I sat in the background when the nurses and docs came in. The only exception was when the surgeon first explained everything to her. Then my husband came, too. Emma handled everything so well, much better than I could have at her age. She doesn't really need me. I make meals for her and nag her to eat. I go shopping and come back with a dozen Odwalla chocolate protein drinks because they were on sale and each one has over 400 calories and 32 grams of protein. I called to make her appt at the GI clinic because I knew she'd procrastinate; phones really are a big challenge. I drive her to appointments because she doesn't drive yet. Yes, she could take the bus, but it would be almost two hours one way.

I'm the primary caregiver for my parents. I watch my grandchildren when I can. I've cared for my daughter through her other medical issues and her sensory processing issues. I had a foster son with cerebral palsy. We had a host home for adults with developmental disabilities. Our clients all used wheelchairs. One required total care. I worked at a nursing home for a few years. I foster whole litters of newborn puppies, for goodness sake!

Now, I have to step back.

It took all these posts to tell the story of her stay in the hospital, partly because being there allowed me to observe and be inspired to write, but partly because getting to this point is hard to articulate. I have to step back and only be there when she wants me there. I don't need to know what the doctors say. I don't need to know what she decides to do. She may tell me, but it's up to her. In some ways, it's more of a challenge for me to step back after all the years of carting her to appointments, sitting with her through various procedures, creeping downstairs at Ronald McDonald House to get a midnight snack in the kitchen, holding her when she cried.

And then there's this - when she went into the hospital, I called my parents and told them they were on their own for awhile. I need to begin paying attention to their needs again and I find I'm reluctant to do so. Taking care of our daughter was also an excuse to take a needed break from caring for my parents.

Parenting. Caregiving. Life. No one ever said it would be easy.



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So well written and so honest. Thank you! My granny told me one time that my mom could be 80 years old and she would still be her baby. I think that is the basic truth for most moms. It is for me. Taking care of a child and taking care of parents is different. I looked after my parents for a number of years but I had issues with them and they could push my buttons in places no one else knew existed. It has been a long time since I had the privilege of being there for one of my kids at a hospital. I personally think you are doing beautifully and I don't think there is a thing wrong with talking to your daughter about her life. And...I am blown away by all the caregiving. Amaing!


Emily, THANK YOU! I need to hear this and coming from someone her age, it means even more!


You love your parents, but not like you love your kids. You love your spouse, but it's still not like the love you have for your kids. I have not stopped wanting to keep my kids from feeling pain and they're in their 30's. It's The Mom-Thing. Goldie, your enormous capacity to give of yourself first benefits everyone around you. Thanks for continuing to share your story.