Author: NealieRose

More Than Surviving


Hi Everyone!

It’s been a while, and I wanted to keep you updated about Lilly. So many things are going on, and some are really good!

Lilly is still in a State facility, but it’s a really great one, with the best staffing we have experienced in this long journey to various places. Some cool things:

Lilly has a staff that does hair, and she gets all kinds of hairdo’s to make her happy about her appearance. Her hair has been red, green, brown, and orange. And she’s had different extensions added from time to time. The girl is stylin’, and it’s a terrific distraction for her. (Not her pictured.)

She can swim indoors each week.

There are outdoor cats that are friendly to a point. She has helped care for them, and it has been a positive thing in her life.

Lilly has a 2 hour organizing job that she does on campus that nets her $20 a week.

Staff will take her to a drive-thru for fast food when she has the money.

Bruce and I see her in person every other week, either outside or in a game room. When we are there, we play card games and show her pictures on our phones.

We can have a DUO (face-time) visit almost any day and actually see each other that way. This has helped her (immensely) to feel connected.

She has a boyfriend in another building on campus, and she is allowed to have planned little dates where they eat together or sit outside and talk. This has made her feel more normal as a young woman.

The not-so-great things going on are:

Lilly has found Face Book, and it’s been a train wreck. Lots of hurt and embarrassing moments on FB. She is learning how to be more appropriate now, and that there are things (and people) who are not good for you!

Workshops have been closed down due to Covid. One less place to go, and she likes going places.

She hasn’t been allowed to come to our home for about 8 months because Covid risks.

Lilly can sometimes get super-agitated and will lash out…not often, but it still gets very scary. Although she has been (impressively) kind and helpful with her developmentally-disabled peers 90% of the time, the other 10% is rage, and can have her choking someone who has gotten on her last nerve. So it seems the 10% is why she needs to be in a facility, (plus for her protection from people who would take advantage of her).

The last negative is smoking. Lilly has become addicted, and it’s a source of trouble, because she can’t afford all the cigarettes she would like to smoke. If they are available, she smokes constantly. If they aren’t, she is edgy and angry.

Lilly is not so different from the rest of us. She wants freedom, romantic love, peer respect, privacy, and income. The problem lies in the behavioral extremes of her life that limit these. How would you like to have someone check on you every ten minutes? But it is necessary.

A recent conversation with Lilly:

“Hi Mom!”

“Hi Lilly-Billy! How’s your day been?”

“Not so good. Dustin has been on my last nerve. I swear I’m gonna punch him out. He just won’t shut up! And he takes my stuff. I keep telling staff to keep him away from me.”

“Yeah, that stinks. Isn’t he the guy you choked?”


What’s on for dinner?” (I try to redirect her.)

“I think we’re having piz- HEY! Be right back, Mom.”

She was gone about 60 seconds and came back to the phone and said, “Sorry about that. Someone was being mean to Dustin and I had to help him out.”

I commented, “Dustin? The one you hate?”

“Yeah, him.”

“Wow, Lilly, I am SO proud of you!”

Giggle…”I know, right?”

😀 Nealie

P.S. Don’t forget about Chasing Lilly for a Christmas gift for your home-bound friends! I think we have more time to read these days, which isn’t a bad thing!







We Found It!


Hi Friends and Readers!

It’s been a while since you’ve heard from me. My news seems so small compared to the world news, but I’m reporting nonetheless.

It hit me today that Lilly has found the perfect residential center. She has lived there about a year now, and I have absolutely no complaints.

Now that’s news. The problem is that I cannot share where that place is because of Lilly’s privacy concerns.

So what is the difference between THIS place and the five (or six?) other residential settings where Lilly has lived?

A big difference is location. It is away from the big cities where most of the other places were. I have a theory, too, about it:

Life is slower in a country or rural setting, and the employees are more relaxed and happy. They seem like an entire different species of people! They smile. They aren’t so rushed. They actually seem to care more, and I think they that really do. The employees treat Lilly and each other with respect.

So now that we have the perfect place, and Lilly has done so well (because she is able to relax and feel safe), guess what unfortunately comes next?

…Being moved out of this center and moved into another less expensive place somewhere. Of course.

If I can thank the COVID19 crisis for anything, (imagine that), it would be because it’s holding up Lilly’s next move. For until most restrictions are removed, she gets to stay put.

I’ve been thinking a lot about how things could have been so much better for Lilly (way before now) if the places she lived were designed and run differently. I’d like to share my ideas about what “that place” looks like (to me) in the near future.

Maybe it could really happen someday.

Love my Readers,