The 18th Birthday – Lillian Darnell

September 14 2019:

We had another busy day as the 18th Birthday celebrations came to a conclusion. ♥️🌸🌸🌸🎉🎉🎉♥️

Eating cake and donuts and opening gifts. Followed by a quick September 2019 Date Day trip for fries and dessert.

Then back home for the live Facebook celebration. Which was hilarious as we had a lousy connection and had to keep restarting …. Five times!!! Hence, the 5 live videos on my timeline! Ha!

During the video Lillian shared 18 wishes for her 18th Birthday. Here they are ….

1. I wish Macy, Lauren, Kaitlin Baker, and Rebecca could come to Reno, NV.
2. I wish to be able to drink out of a cup/glass without a straw.
3. I wish to be fearless.
4. I wish for infinity art and crafts supplies.
5. I wish for infinity clothing.
6. I wish to be able to travel around the world with my friends and/or by myself.
7. I wish for the Earth to be healthy again.
8. I wish for the Earth not to die.
9. I wish to be less picky.
10. I wish to live with my friends.
11. I wish to be less vulnerable to spicy hot stuff.
12. I wish to have a dream home.
13. I wish to have a dream vehicle.
14. I wish to see Hawaii.
15. I wish to go to Florida.
16. I wish to have infinity photography supplies.
17. I wish to have more friends.
18. I wish to have two beds.

September 14 2019:

Lillian’s 18th Birthday Celebration …. We had a lousy connection so had to keep starting again as our recording ended!! HA! Each one is pretty short!

 

 

Supported Decision Making – Research as Lillian Approaches 18 Years of Age

August 20, 2019:

Thank you Diana Beeghly Rovetti for getting me one of these packets! And, thank you for spending 2 hours with me discussing Supported Decision Making, Sierra Regional Center odds and ends, transportation, SSI, Sibshops, and whatever else we covered!!! Ha! Thank you, thank you, thank you!!! Deeply grateful! Another load off my shoulders. Whew!

August 24 2019

Two to three weeks working my way through the “Lillian turns 18” next month list, along with other “must be addressed” items.

SSI figured out for the moment
I have a better grasp on Supported Decision Making now and know I don’t have to feel rushed for that one.
Have researched and messaged back and forth regarding changes to the dosage of CBD oil
One issue almost completely taken care of – just waiting to receive something in the mail.
Still working my way up the ladder with the SRC issue. Got the supervisor of the supervisor’s email address yesterday afternoon.
Have gotten Meeting the Authors nearly caught up
Got 2 boxes packed for our upcoming move 😂
July and August date day with Lillian
Now … hoping to make my way back to my book this week and plan for Lillian’s 18th birthday!!

Thinking I may take a day or two off in October … July, August, and September have been and will be intense! Whew!

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August 27 2019:

FINALLY got the issue with SRC resolved! Took nearly a month and going as far as the supervisor of the supervisors. Now I know why I like emailing as opposed to the phone. I had a timeline that indicated I had turned everything in as asked, when asked.

Recap: Turned in all documents in May having to do with a service for Lillian. It was approved. We used it for June and July. Got a message in July they had canceled the approval and had put her on a wait list as they didn’t get the documents needed. I kept getting “nothing can be done” until I sent an email this Monday to the supervisor of the supervisors. Done. And, retroactive to include July as I didn’t know they had not paid the provider for July.

So …. when dealing with agencies, keep notes on your calendar and email whenever possible!! Whew!! One thing completely off the list! Onward!

And a side note … I am kind in these communications; but firm. I also make sure the supervisors know that the person they supervise has been pleasant and helpful and that I appreciate them (if they have and I do). I did let them know about a rude individual who had contacted the provider about not receiving a form that was turned in …

The Flame of Advocacy – Camilla Downs

August 15 2019:

I know I am not alone in hosting in my heart a flame of advocacy for our children, and definitely our children with differences who cannot advocate for themselves.

My motto of “Love is the answer” was put to a true test this morning. In May I followed all directions, completed all paperwork for a service for Lillian; which was approved and we have used for two months now.

I was told a few days ago that since they did not process the paperwork properly (and actually lost the first set of documents I submitted, therefore making it overdue and Lillian not eligible) that Lillian would be put on the wait list.

I patiently waited for a reason for this from our contact person and only received, “nothing can be done”. So I asked for the supervisor’s name and email address. I sent an email yesterday to the supervisor with a time line of all conversations and emails showing that everything had been turned in and I can’t possibly control what someone does with it after it leaves my hands.

I received an email back this morning that blew me off and said that nothing could be done. After receiving this email, you bet there was huge anger rising. I absolutely had to concentrate on taking long deep breaths to create calm. HA!

I emailed back asking for this person’s supervisor and email address. I immediately received two phone calls and two voice mails and an email as the person I emailed thought that I was someone else, so she did not have the same tone and response had she had if she had known I was Lillian’s mom. I was okay with that since I know people make mistakes.

And, in that email where she said she was very sorry for thinking I was someone else, she also said she is asking administration to reconsider since everything was turned in and they lost it or misplaced it. And that we should not bear the cost of their mistake.

Well, thank you Ms. Supervisor. That is precisely what I thought too. I am so relieved you agree with me. I thanked her very much for stepping in and helping to right the situation. We shall see what they say. I may be continuing up the supervisor ladder … If it must be done, I’ll do it.

I am not posting this for sympathy. I am posting for solidarity, for strength, for courage … and just because that’s what I do. I share. Here’s to all who advocate for those who cannot. Whether they be human or animal.

The Salt Flats – Incredibly Gorgeous and Magical

Another I felt deserved it’s own post … The Salt Flats in Utah are incredibly gorgeous and magical feeling!

July 28 2019:

After leaving Salt Lake City yesterday, we stopped by the salt flats for a quick look. I love standing and walking barefoot on the salt. It is quite crunchy in some spots, but the bottom of my feet felt still feel oh so soft. The bottom of my feet felt so good last night. Ahhhhh ….

Check out the cool photo Lillian took of the rest of us. Optical illusion!!

Adventures of Marigold Springs by Lillian Darnell

Another wonderful Lillian story … Once many years ago, there was a time when Marigold Springs was called Magnolia Springs. Magnolia Springs had a girl named Marcella (Marie for short) and she wanted to travel to far off places to have daring cliffs and a never-ending basin of poisoned water.

More importantly, Marie longed for ….

Asking for Help and Please and Thank YOU – Chromosome 18 Family Conference

July 13 2019:

I’ve never used this before … Yet, I’m kinda, sort of, like, REALLY exhausted and was moved to give this a go for the wee bit remaining to fully cover the cost of this year’s Chromosome 18 Conference. If it moves you and you feel it the right thing to do, please share. Much love! The conference is being held July 21st-24th in Colorado Springs, Colorado.

Once a year she gets the opportunity to be amongst friends and those who get her, those who judge not. Once a year, she gets the opportunity to attend a life changing event. And, every year it does, sometimes a small change, sometimes a huge change. She chooses the time approaching this once a year event, and at the event itself, to conquer fears so as to have exciting news to share with friends …….

Visit this link to read more and to share should it move you. With deep gratitude for all who have shared and donated in the past few days. https://www.gofundme.com/f/help-lillian-spread-her-wings

 

How Liana and Summer Came to be Best Friends by Lillian Darnell

June 25 2019:


Photo by Dominika Roseclay from Pexels

A wonderful story Lillian wrote in honor of National Donut Day earlier this month …

One day, a donut named Liana was walking toward a building called Friendship Inc. and wondered if someone in this building would be her friend. Little did she know, a watermelon named Summer was running toward the Friendship Inc. building and wondering the same thing.

When Liana and Summer reached the …..

How Liana And Summer Came To Be Best Friends

Support Lillian as She Spreads Her Artist and Author Wings

June 23 2019:

Lillian has another guest blog post upcoming and we thought it time for her to create an official page for her writings, art and creations. If it feels the thing to do, I invite you to “like” her page. Thank you tons from both of us … ❤️❤️❤️ … Go here to like her page … https://www.facebook.com/LillianDarnellArtist/

My Dream Story by Lillian Darnell

June 14 2019:

Another wonderful story by Lillian …

“Once many years ago, Anne was playfully jumping on some stepping stones designed to look like flowers. Many years past and Anne was now sleeping peacefully and was dreaming. Meanwhile, there was a hidden dream cam in her brain recording her dream.

Anne’s dream got … ”

My Dream Story

 

 

 

Library Volunteer Day for Lillian

May 22 2019:

Wednesday = Library volunteer day. We always pull the holds and sometimes shelve books or anything else they need help with. Oh … And a few books we’d like to read may or may not get slipped onto the cart also! Ha! Going on 2 years now. 📚🧡🧡🧡📚