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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!







Phone Calls


I could tell it was Lilly by the number on my phone…

“Hi Lilly, how are you?”

“Mom, you won’t believe what I just found,” she said.

Always curious I asked, “What?”

“Girl, I was stressing out that I lost my phone, but I found it in my coat pocket.”


Lilly has a way of talking that cracks me up!

She still loves the leopard print shoes, sunglasses, clothes, hair dye, and any and all bling.

That gets a little scary when we go out because she isn’t able to process why she gets so many looks from people, and sometimes gets angry when someone (who she deems suspicious) stares at her.

Now if it’s a cute male, she basks in the glow of his stares and stares back. (Me? I just want to get the meal over and leave!)


Sometimes she’ll call and sound off about something that I cannot fix. Those calls usually end with her hanging up on me after she says, “You are making me really mad, and I am saying goodbye now.” Click.

I think it’s great that Lilly is learning to express herself without profanities, don’t you? But I’m pretty sure the words she wants to let loose on me are often directed toward staff after the call. Oh well.

A daily call to or from Lilly is the norm here. During this time of quarantines and distancing we are talking more than once some days, but the problem becomes what is there to talk about? It’s not exactly like life is overflowing with exciting happenings these days. I did tell her yesterday that because of the quarantines we wouldn’t be able to see her for Easter, and she burst into tears and said goodbye.

That was not a great subject to bring up, but unfortunately this is how life is right now. If any of you have any interesting news that I could relay to her, tell me, please. I’m running out of things to talk to Lilly about, lol! When you don’t leave the house there aren’t many things to see. These times are challenging in many ways, including daily phone calls.

I’m definitely not sitting around all day, but the things I do on a daily basis are not interesting to Lilly, and we can only talk about the cat (who sleeps all day) so many times. 🙂 Sometimes talking about a family member that she misses makes it worse, because she feels left out of the loop. I struggle with what to share sometimes because Lilly truly is sensitive.

Suggestions are welcome!

Love my readers, Nealie