More Research on Supported Decision Making

September 5 2019:

I’ll be immersed in this for the next few days. Thought I could wait a bit longer and come back around to it. However, our move in date to the new place happens 2 days after Lillian turns 18. She will have to sign the lease and/or I’ve got to have this bit figured out.

September 6 2019:

Done reviewing the handouts. Moving on to the websites now. Here are a few slides that stood out for me. 👀 Deeply appreciative to Diana for getting me copies of the slides and handouts as I found out about this workshop on the morning it was to happen.

The New Place While Making My Way Reading

August 12 2019:

Got to see the new place this afternoon .. styling with the orange vest and hard hat!! Less than a month now … We will lose a few great aspects of this place and community; yet, will gain great aspects that this one does not have. 🎉🎉🎉

August 13 2019:

Making my way through the “to do” list for this month and September. With Lillian turning 18 in September and our move in September, there’s much that needs addressed.

After two days spent educating myself about the qualifying aspects of SSI, I think I can check that one off the list. What a relief and weight off my shoulders for that one!

Now to address a call today that due to an agency losing paperwork that I followed instructions for submitting, and for which Lillian has received services for 2 months; they have decided she has to get on a wait list since they lost the paperwork the first time around. Tomorrow. I will deal with you tomorrow. I’m on a roll!! Bring it!

August 15 2019:

Currently reading. One is the second time around. I have different books for different times of the day. Two for early morning reading and one or two for before bed. How about you? What are you reading? Do you read different genres for different times of day? Or is that my special thang? Haha!

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.

Mermaid’s Song by Lillian Darnell

July 17 2019:

Mermaid’s Song

Mermaids swim the water
like a dolphin.
Mermaids sing as 
sweet as a pineapple.

Mermaids travel like whales
to explore magical lands
of unknown kingdoms.

Mermaids swim in the sky’s ocean
dancing in the sunlight.
Mermaids flick their tails
leaving water droplets
high in the sky.

Mermaids whisper
my name into the shell
as I listen to the waves of
mermaids talking.
©️2019 Lillian Darnell.com

Written by my 17 year old daughter, Lillian. She is still fundraising by offering to write a custom poem just for you. She wrote this one for a friend down South … Mermaid themed! Thank you Christy!! Let us know if you’d like one! Donation amount is completely up to you.

from Lillian: Hey, everyone! For this year’s fundraising efforts for my family to attend the Chromosome 18 Conference in Colorado Springs, I decided to make customized poems. Here’s some information on the poems:

The poems will be nature themed, fairy themed, mermaid themed, or unicorn themed. Every poem created will be different and uniquely yours! The poem will be made into a lovely graphic image and emailed to you. Go here to read why this is so important to her …

Fundraising for the 2019 Chromosome 18 Family Conference – Poem Creativity

Although the conference is over for this year, you can still take part in Lillian’s offer of a custom poem. We’ve got a move coming up on September 9, and funds raised will go towards that. Lillian and Thomas will each get their own bedroom!! Plus, Plus!!! We will have a 2nd bathroom!! Ament to that!!

Unicorn Magic by Lillian Darnell

July 7 2019:

My daughter is fundraising to help pay for she, her brother, and myself to attend a family conference related to her chromosome deletion …. 18p-. It’s the Chromosome 18 Family Conference and this year it’s in Colorado Springs, Colorado USA.

She will create a custom poem especially for you and the donation amount is entirely up to you. This one was a request for a unicorn themed poem from my friend Karen in Mississippi.

Pease share with others you know who may wish to support Lillian. Thank you!!

Unicorn Magic

Unicorns dance like clouds
Leaving little rainbows everywhere.
Unicorns prance happily
as a wave of rainbows everywhere.

Unicorns chase their tails like
dogs shedding pretty
sunsets everywhere.

Unicorns watch over us
Like guardian angels.
The unicorn flies into my dream
As I sleep.
©️2019 LillianDarnell.com 

To learn more, to support Lillian, or read why it’s so important to her, go here ….

http://lilliandarnell.com/2019/03/27/fundraising-for-the-2019-chromosome-18-family-conference-poem-creativity/

 

All About Lillian – Guest Post

July 4 2019:

Guest post by Lillian Darnell hosted by Tracey Scott-Townsend Writer who lives in Kingston-Upon-Hull, East Yorkshire. Thanks tons Tracey for asking Lillian to write a guest post! We are deeply grateful!!

“Hey! My name is Lillian Darnell. I am 17 years old and live in Reno, Nevada USA. I just graduated from high school, have received a one year scholarship to Skillshare.com and am ready to put forth more writings, photography and art …. ” Visit the link to read the entire post and we’d sure appreciate if you “like” the post, comment and/or share it. Thank you!!!

All about Lillian

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

 

Rainbow of Emotions Abstract Art Makes Way to California

May 1 2019:

Today was a beautiful day to mail a “Rainbow of Emotions” print!! Thank you Steve for supporting Lillian’s fundraiser! 💗🎉🎉🎉💗

Would you like to help support Lillian’s fundraiser? Go here to learn more … 2019 Chromosome 18 Conference

Not Enough Left of This One

April 11 2019:

She must have 3 bookmarks marking her spot. And they must be the same 3 bookmarks. No substitutions should one of the three get “lost”. And. She uses them until they cannot be taped and repaired any more!

She says, “I don’t think there’s enough left of this one to use as a bookmark.” Hallelujah!!! After years one of the 3 gets replaced!! 🤣🤪😂💙📚…. This post has been approved by Lillian.