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!

When I Know It Is Time for a Lillian Break

April 24 2019:

Reasons I KNOW it’s time for a Lillian break:

I’ve been can’t-move-my-body exhausted (with a side order of pounding headache) every night this week.
I turned the heat on last night instead of the air conditioner … it was a balmy 75 degrees almost all night! 🤪😂 Realized what I had done not too long before getting up.
One of the 3 times Lillian woke me up, she asked for throat spray (homemade with cold spring water and peppermint essential oil) …. She got one good spray directly up her nose! Oops!!! Sorry Lillian …
I had a peanut butter & jelly sandwich for dinner tonight.

The Romano Duo picked up Lillian this afternoon after our library volunteering. She’s off to spend 3 nights with them; rejoining Thomas and I on Saturday. Just in time for movie night! Hallelujah … It’s break-from-Lillian time! Love you to infinity Lillian! And, grateful for our breaks!! (Photo from May 2018)

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.

She’s a Member of a Rare Club and I Am Crazy

February 28 2019:

This spitfire is 1 in 56,0000! Missing the short arm of Chromosome #18. Honoring all who find themselves as part of this club on Rare Disease Day. Red for 18p- …. ❤️❤️❤️

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That’s it. I’m one crazy lady. Lillian asked in December if we could take advantage of “free for locals” winter swimming at the Grand Sierra. Sure, we can do that.

For one reason or another we didn’t make it and today was the last day for the free swimming.

We first made our way to the Infinity pool. With wind gusting so hard we could hardly walk. That’s it in the last picture. I think I would have preferred 30 degrees and no wind as that’s what it felt like. Thank goodness the pool is heated. Needed my ear muffs though. Frozen ears!!!

You can tell by our smiles that it felt much better in the hot tub. It is protected from the winds by the hotel building and ahhhhhhhh, ohhhhhhhhhhh so warm.

One crazy a** adventure done!! Check. Lillian, please do not ask to do this next winter!! Hahaha! I’m glad we did it. We laughed. We smiled. Yet, I’m a “I’ve done it once, don’t need to do it again” adventure person.

Between this and the hour long walk this morning in the 25 mile an hour gusts, I’m ready for bed! Mother Nature packs a powerful workout! No gym needed!

I figured she wouldn’t last long!! (And, she didn’t) So, thought the little bit I’d be cold was worth it so she could experience this …. (and hopefully not want to ever do it again!!)