February 7 2021
New poem from Lillian Darnell … This made my eyes pool with liquid love .. 🤍❤🤍
Peppermint in the sky above
Smelling like festive mints
sweet scents feel the air
Cinnamon dances
like brown snow
as cinnamon fades
through the dark
Pine trees sway and dance
Like wind and dancers
Spreading the …. Follow the link to read the full poem
February 11 2021
Another new story from Lillian Darnell … xoxo
Once there were two female unicorns named Rosa and Beth who lived in a land called RainbowTopia. The two female unicorns lived with their family and the family all thought all was well or so they thought …
January 31 2021
Lillian made more abstract art, finishing it today. I’m thrilled to see her creating again. ❤️🧡💛💚💙💜🖤🤍🤎
Stay tuned as you will soon be able to purchase or download prints of Lillian’s artwork … Coming Soon!
October 23 2020
It is done. I normally wouldn’t take so many pictures. Yet, this was Lillian’s first time. She can’t/won’t wear a mask so she didn’t get to walk it in to the official ballot box at Raleys – took me about 2 minutes. 💙🌊💙
When Lillian reluctantly agreed to register to vote last year while we were getting her ID, she had no intention of voting. I suggested she might change her mind, and this way she’d be ready, just in case. I asked her last night why she changed her mind, deciding to vote. She said, “The United States needs me to vote.” She researched the candidates and the questions for hours. Congratulations, Lillian Darnell!!! 🏳️🌈🏳️🌈🏳️🌈
**THROWBACK POST**
November 3 2015:
The article I contributed to Interaction, which is a multidisciplinary journal for the Australian Institute On Intellectual Disability, has just been published. Here’s a brief description of what and why I was asked to contribute: “looking at creativity in how we work and interact with people with intellectual disability. The other theme I am interested in exploring is empathy and how this “works” within our relationship building within intellectual disability”
Excerpt from the article: “One blood test, one phone call, one moment in time, drastically changed the direction of my life forever. I know more about genetics, chromosomes, DNA, motor skills, verbal skills, and now emotional and behavioural issues than I ever thought I would need or want to know. ……. I thought I had life pretty much planned at that point and for a while this brief phone call seemed to have caused my life to break apart like a melting iceberg with pieces scattering here and there. Looking back now, all that was brought into my life, all that occurred, all that began, and all that ended were meant to happen for my own growth and enlightenment. An enlightenment I feel spreads far beyond myself and my family as I believe we are all connected.”
My article is on page 30. However, the entire journal is excellent! You’ll need a chunk of time to read it as it’s short story length at around 4,000 words. I encourage anyone who is moved to subscribe to this wonderful publication! Enjoy and please feel free to share and/or forward to anyone you think would benefit! With oceans of love … xoxo
Click here to read the digital version of the journal. The access code is: K9HqOa
My article is on page 30. However, the entire journal is excellent! You’ll need a chunk of time to read it as it’s short story length at around 4,000 words.
I encourage anyone who is moved to subscribe to this wonderful publication to do so! Enjoy and please feel free to share and/or forward to anyone you think would benefit! With oceans of love … xoxo
PDF version: Interaction Volume 28 Issue 4
September 19 2020
I’m finished. I’m done! After eight years, Lillian will be fully taking over an aspect of her self care. We have been working the past seven months on her taking it over fully. I did it for the last time about 30 minutes ago! Hallelujah!! Congratulations to Lillian!! Photo from our July 2020 Date day.
Today, Monday, 9.14.20, at 4:00pm PST Lillian Darnell and I will be live for about 30 minutes so her friends and YOU can help her celebrate her 19th birthday!
We had plans to go to the arboretum this morning, then a poolside BBQ with The Romano Duo this afternoon. But …. Air Quality from the fires in California is in the unhealthy range. 😢😢😢 … We will still do all planned but will have to be another day …
Please join us. She’s had a rough time, not being able to have our typical dates since mid-March. She’s not been inside anywhere since then. We hope to see as many of you as possible! Much love to you! xoxo (We will have Zoom as back up should facebook live not play nice. Last year we kept losing our connection!)
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Opening gifts.
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The “LIVE” celebration on facebook …
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The goodies. The cake looks like hell, but tasted like heaven. It’s vegan. It’s gluten free. It’s delicious. Looks had to fall by the way side. 🤪
Why so many photos blowing out the candles? Up until the 10th birthday or so, Lillian could not “blow” to blow out candles. Still takes a few times. But she can blow wind now!!
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September 20 2020
Look at this super cool gift that Lillian received from her friend. Thank you, Macy Miller! I hope she lets me help put it together.
**THROWBACK POST**
December 6 2013:
Sweet Lillian had a major melt down the other morning. Oh my word! I realize how much Thomas is looking to me to see how I respond and how to respond when she’s lost it. There is no speaking to her. One must wait until she has calmed. As she was in her room trying to get calm, I explained to Thomas that she is going through puberty on top of having a decreased ability to control and handle her response when things don’t go as she wants them to … due to her chromosome abnormality. At times it is difficult for me to control my response!
What seems to be working during this phase is to flood my thoughts and heart with love and compassion and respond softly. This does not mean I do not respond when Lillian blames me and Thomas for how she chooses to react. I gently let her know that absolutely no one controls what she says and does but her. I give her suggestions like taking deep breaths, counting, going to her room, reading a book, changing what she’s thinking about, drinking some water.
Thomas has a great deal of anxiety when Lillian is unhappy or having a melt down. I attempt to show him by my reaction that we want to not let our emotions/attitude be controlled by other people and their emotions. I explain that I know it’s difficult at times and that if we are at least aware of this, then we can be more helpful by focusing on a solution when needed. Otherwise, Lillian has had great days all this week! Love and hugs y’all! xoxo
For years I have been making a shift to more mindful living. By no means do I have this perfected and there are times when I’m less than happy with my chosen response! However, when I do offer an “icky” response, I don’t beat myself up about it. I take note of it, release it and move on …
I sometimes over react too. I forgive myself, apologize to others and release it. We know that anything we say in anger is not coming from our true selves. Our true self only knows love and compassion. Oceans of love and hugs to all y’all!! xoxo
Honestly, there are times I would like to stick my head in the sand and pretend I don’t have kids …. And then, in the thick of the dramatic moment and in times of calm, I look deep into Lillian’s or Thomas’s eyes and we truly “see” one another. We each know that there’s no need to play games or “do” drama …. that’s not who we truly are …
2015 update:
It’s been 2 years since I posted this. It served as a good reminder when it popped up in memories. I’m still working on the blog post about the current journey with Ms. Lillian. I’d love to say that this got better. Yet, in fact it got worse (the melt downs became volatile last December 2014). We are making really good progress with psychotherapy (focused on mindfulness, recognizing emotions, and CBT).
Thomas does indeed still have anxiety when she has a meltdown turned explosion. Yet, he has learned the art of distraction. He tries his best using this method. Plus, he’s even used it on me! It’s been a journey of growth and learning. It’s been perfect and is happening exactly as it should be! Lillian has been the teacher that brought mindfulness into our life and that is a true blessing! Hugs to all y’all! xoxo
(Recent photo of Lillian, on one of our walks)
**September 2020 Update**
I’m happy to write that things have gotten better! Lillian began using botanical oils in 2017, and once I got the dosage and timing figured out, it has helped tremendously. She still does have the occasional volatile melt down, but not nearly as often. I’m sure that maturity has helped a bit, too. Yet, still waiting for that to kick in a bit more.
August 13 2020
Another ‘to-do’ checked off during the two week break. Ordered and installed a new interior passenger door handle. After nearly a year, I no longer have to be a valet for Thomas! 🤣 Many times I forgot he couldn’t open the door, walking off and wondering why he wasn’t getting out of the car. He was not amused!
August 13 2020
It is time. I’ve got to get over my fear of what could potentially happen. Lillian needs foods chopped into small pieces or she will choke. The carrots and fruit were the last bit of her lunch making to take over for herself. Pray for me. Ha! This may do me in. Seriously, though, she is doing a fabulous job at keeping her fingertips and thumb out of the way.
PS … My comment is mostly tongue in cheek. I’ve taught and modeled the hold positions and watch her like a hawk when she’s cutting. A friend suggested having her watch some videos modeling technique, and think I’ll find some Youtube videos for her to watch too.
She’s doing a really good job with the form. She just doesn’t have much strength in her hands. So, carrots are a bit of a challenge.
July 13 2020
The Chromosome 18 Annual Family Conference that happens every summer got postponed this year. We would have been in San Antonio last week for it.
However, they put together a virtual conference with one live session every day this week. Plus, a live virtual dance party on Saturday!
My head is spinning after this session. Incredibly grateful for the abundance of information from Benji!
July 14 2020
Today it was the self-advocate (Club 18) Panel
Two amazing hours hanging with the self-advocates. Getting to hear them answer questions about living on their own (or not), driving (or not), how things have changed for them due to Covid-19, their jobs, and their lifestyle. So wonderful!
The Chromosome 18 Annual Family Conference that happens every summer got postponed this year. We would have been in San Antonio last week for it.
However, they put together a virtual conference with one live session every day this week. Plus, a live virtual dance party on Saturday!
July 15 2020
Another great one for planning purposes. Overlapped a tiny bit with Monday’s session (in a good way), but covered many different topics. Worth it to watch the recording.
The Chromosome 18 Annual Family Conference that happens every summer got postponed this year. We would have been in San Antonio last week for it.
However, they put together a virtual conference with one live session every day this week. Plus, a live virtual dance party on Saturday!
July 16 2020
Today was the Sibling Panel!
Thank you so very much to all the siblings. It’s wonderful and enlightening to hear your perspective. Huge thank you to Thomas for your honesty, and balancing out the panel as someone who doesn’t have a shining relationship with their sib. I AM incredibly proud of you!!!!
July 18 2020
Blurry photo, oops! Last session of the online conference. Look at all the beautiful faces Neale Parker has as his background. Looking forward to the dance party at 5:00 PST. 🍀💐🍀
The Chromosome 18 Annual Family Conference that happens every summer got postponed this year. We would have been in San Antonio last week for it.
However, they put together a virtual conference with one live session every day this week. Plus, a live virtual dance party on Saturday!
July 18 2020
The finale of the annual Chromosome 18 Family Conference. A fabulous dance party! Chromosome 18 Registry & Research Society
Oh my gosh!!! That was so freaking fun!! It was amazing to see so many C18 faces!! YaY!!! WE ARE FAMILY!! 💃🌸🌸🌸💃 I was cooking dinner and dancing! Ha!
The Chromosome 18 Annual Family Conference that happens every summer got postponed this year. We would have been in San Antonio last week for it.
However, they put together a virtual conference with one live session every day this week. Plus, a live virtual dance party to end the conference!
