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!!)

Colorado Springs – What Places Should We Visit

What should we do and see? The Chromosome 18 conference is in Colorado Springs this July. I’m so excited for this one as I’ve longed to visit there!

Any suggestions for places we should visit? And, also suggestions for any place that I should visit for some me time? Thank you!! 💜🙏

Flying to Tennessee and Life is a Fairy Tale

December 19 2018:

Look out Tennessee!!! Where Would You Fly is flying your way!! She’s magical and she sprinkles fairy dust all along way! 💚🧚‍♀️ 🧚🏼‍♂️ 💙

“Life itself is the most wonderful fairy tale.” -Hans Christian Andersen …. from the book, “Where Would You Fly” by Lillian Darnell

Go here … Where Would You Fly … to buy a copy of Lillian’s book. Thanks! xoxo

She is Thrilled to Be Making It

December 14 2018:

Gerry, the wonderful lady we met at the Barnes & Noble book signing last month, is super thrilled to be making a quilt using Lillian’s Rainbow of Emotions!

She fell in love with the artwork and kept commenting how great it would look as a quilt. The thought finally occurred to me to ask her if she’d like to make one if we had interest from someone in having one.

Well, this lovely 3 X 3 quilt, once made, will be headed to Houston, Texas to adorn a studio wall!! Yee-Haw!! xoxo

Would you like to have a 3 X 3 quilt to adorn your wall? Comment here or send a message to Camilla Downs @ gmail . com … xoxo

 

Sometimes I See People Staring At Me

November 12 2018:

“Sometimes I see people staring at me. I can see in their eyes that it’s a ‘you’re crazy’ look.” – Lillian …

I asked her if this bothers her? Yes, it does. …. (I told her they must be staring because she is so beautiful … 😍😃)

In the past when I’ve noticed others staring at Lillian, I ask them if I can help them and ask if they have any questions or if they are curious about Lillian. I also let them know it’s unsettling for another to be stared at by someone.

I will be kind. Yet, I am human and I am also Lillian’s mom and protector. I do have my limits. I told Lillian to let me know the next time it happens so that I can “help” the one staring.

People stare at me often too. I have no idea why. I have finally reached a point where I can mostly not be bothered by others actions and words. Yet, I also just don’t give a pluck. 😂🤣😜And, there again, maybe I have lettuce in my teeth or my clothes are on inside out … Hahaha!! xoxo

I posted this on facebook on November 12th and thought I’d share some of my response to friend’s comments ….

I’m sure most people don’t even realize they are doing it. Yet, it digs at one’s heart when one’s offspring is bothered by it enough to say something … more than once. I also told her that she could ask them why they are staring if she felt like it.

I have had a child ask me “What’s wrong with her?”, so since they were a child, I was able to explain it all to them. However, having an adult say that would most likely put me past my limit! I’m so crazy myself, and having a wild imagination, I would have them thinking they need to seek another planet on which to live … xoxo … And, then again, I may just start dancing. That would really freak em out.

Thomas asks me sometimes why I’m staring at him. I’m not. I’m just deep in thought and looking in his direction. I think for the most part this is what is happening. Except for the occasional times when one can sense from the energy of the other; that they are being judgmental or having negative thoughts.

I have to say that my split second initial response is a firm-smart-ass-full-of-profanity’s-tell-them- off comment. Yet, I know this gets society no where having this response. So, I tell them what I think, yet, in the kindest way possible.

I get lost in thought at times and I’m sure it seems as if I’m staring at someone when I’m actually just dazed and confused!! HA!

Thankfully, no one has been rude to her, except for when she used to be in public school. Fortunately, I don’t think it bothers her as much as it could. Perhaps it has helped a bit when she or Thomas tell me I’m weird or crazy and I respond with, “Thank you. Thank you for noticing!” HeeHeeHee!

Where Would You Fly Flew to Barnes & Noble in Reno Nevada

November 10 2018:

Where Would You Fly flew to Barnes & Noble!! 💙🧚🏼‍♂️ 🧚🏼‍♂️ 💚  And Lillian and I joined the fun! 💙🧚🏼‍♂️🧚🏼‍♂️💚

Want your own copy of “Where Would You Fly”? Go here! xoxo