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. 📚🧡🧡🧡📚

Lillian is Graduating and I Have Butterflies in My Stomach

May 15 2019:

Just ordered Lillian’s high school graduation diploma and tassel. Now to get the announcements. If you’d like to receive an announcement, message me your email address or post it here. Why do I have butterflies in my stomach? HA! 💜🦋🦋🦋💜 Thanks to my daddy, Robert Downs, for helping with this part! 🙏💜f

May 18 2019:

Look what came in the mail today!! 😳😃 Shhhhh … Don’t tell Lillian. Although, she’ll probably see this post! June 1st is fast approaching! Take that you blankety blank blank geneticist! You don’t have to be highly intelligent and a math whiz to be successful in life and contribute to society!! And you don’t have to do it the way it’s “supposed” to be done.🖕🏻

Lillian Darnell – Graduating June 2019

May 6 2019:

Have spent nearly all day creating Lillian Darnell’s High School Transcript! Oh my goodness! Her official graduation date will be June 1st; which also happens to be National Donut Day … HA! And, the book signing event at Barnes & Noble!

We’ll be celebrating with donuts and books!! I’m sure we will have a wee live online celebration for Lillian’s long distance friends and family too. Stay tuned … What a journey!