Team TLC + Romano Duo + Robert Christmas 2019

December 25 2019

Oh my goodness! Thank you Romano Duo!!

Homemade gift I made for Lillian. This was great fun! Using a book that was destined for the trash, I randomly opened the book and scanned for phrases to make into a poem. Challenging! 💙💙💙

Beautiful gifts from Thomas and Lillian. 💚♥️💚♥️💚♥️

Homemade gift I made for Thomas. This was great fun! Using a book that was destined for the trash, I randomly opened the book and scanned for phrases to make into a poem. Challenging! 💜💜💜

I am incredibly blessed.

A good time was had by all. Team TLC + The Romano Duo + Robert

These two stoke the embers of my heart, giving me strength when I wish to be weak. There is no greater gift.

My eyes nearly began sweating when I opened this gift. A magical bird made from recycled material. Beautiful!!

Christmas Eve dinner was a big scoop of the homemade green bean casserole I had just made. Followed by a piece of apple cranberry pie. Christmas dinner was nearly the same, adding a big scoop of my mom’s potato salad. Yum!!! 💚💚💚♥️♥️♥️

Christmas gift from my brother. My eyes got sweaty over this one. And, y’all, I have absolutely no recollection of this, nor of even being this person. I’m smiling though. Always smiling. 😁♥️

Homemade gift I made for Mom and Frank. This was great fun! Using a book that was destined for the trash, I randomly opened the book and scanned for phrases to make into a poem. Challenging! 💙💙💙 🧡🧡🧡 For Robert’s gift I created a larger than life heart flower. 💚💚💚

December 31 2019:

Lillian thinks I made a masterpiece with the candy canes. Ha!! The vases are packed so I grabbed the French press container and added the candy canes. The inside of the French press fell apart, and I was wondering what I would do with the glass. Improvise!! ♥️💚

 

 

Sweaty Hands for Fingerprinting

November 8 2019:

Another marked off the list. Fingerprinting done. She was so anxious and worried, they had a heck of a time getting her prints because her hands were sweating like crazy. They were incredibly kind and understanding.

She must really like volunteering at the library as that’s the only way I could get her here, by reminding her it’s required once one is 18 years old. She’s heading into her third year volunteering. Hopefully, one day soon she’ll go without me as her sidekick. That’s the plan anyway!

**Update – January 20 2020: It turns out they were so sweaty, that the fingerprints weren’t acceptable. However, they did not request she re-do them, due to her situation and that she’s been volunteering at the library since age 16. She completed a few additional pieces of paperwork and we’re done with this one!

The 18th Birthday Week Celebrations

September 9 2019:

Today’s 18th Birthday Week Adventures … When one turns 18, one needs new fairy wings …. Rose Gold Fairy Wings. One also needs a new sparkling silver star wand.

We also shopped for a store bought cake to take with us to The Romano Duo’s on Wednesday for the birthday celebration there. As we were leaving, the lovely floral person gave Lillian a bright, beautiful, pink carnation. ♥️🌸🌸🌸♥️

September 10 2019:

Today’s 18th Birthday Week Adventure ….

An afternoon walk in her favorite place on her favorite walking trail. 💚🌺🌺🌺💚

September 11 2019:

Today’s 18th Birthday Week Adventure ….

After the usual Wednesday library volunteering, a quick stop in the library garden.

Followed by a birthday dinner at The Romano Duo Casa! Delicious food and birthday goodies! A vanilla confetti cake and a chocolate “cheesecake”.

September 12 2019:

Today’s 18th Birthday Week Adventures ….

A trip to Wilbur May Arboretum followed by a quick stop at Audrey Harris Park and then home for a swim. 🌺💚🌺 It was incredibly beautiful and peaceful.

If I look completely exhausted by the time we have Lillian’s live Facebook party on Saturday, you’ll know why! All for a good cause … You only turn 18 once!

Audrey Harris Park and then Swimming:

September 13 2019:

Today’s 18th Birthday Week Adventures ….

A beautiful and relaxing swim. Tomorrow’s the big day!! Last day as a 17 year old! 💚💦💦💦💚

Now. I must make the chocolate cake for tomorrow!!

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!

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.

So Begins the Week Long 18th Birthday Celebration

September 7 2019:

I remember when I was a brand new single parent when Lillian was 5 years old, hiding in the garage and sobbing, thinking how am I going to do this? How will I do this alone? Well, here we are …

Photo from Lillian’s graduation photo shoot …

Tomorrow begins the week long celebration of her 18th Birthday happening on Saturday, the 14th. She has a mile long list of things she wants to do for her birthday so we are having a week long celebration to make it all happen.

This one has an incredibly tender heart. She was sad and disappointed that many at the C18 conference were not aware she had graduated as they were asking what grade she was in now. So, if you missed the millions of posts I posted around that time, here’s your chance to get caught up! HA! Lillian GRADUATED from high school on June 1 2019!! YAY!! And, she turns 18 on Saturday, the 14th. Be ready for a deluge of posts dedicated to her.

This was the perfect spot for the first set. The little garden behind the library. We’ve been coming here ever since she was 5 years old.

I’ve taken tons of photos of the three of us in this little garden throughout the past 12 years.

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/