Even the melting snow reminds us.
Love is ever there.
xoxoxo (2017 – Photo Credit Camilla Downs)
August 10 2017:
Incredibly grateful for this young man I get to have as my son. Not because our relationship is all roses and rainbows. It’s anything but that. Yet, definitely some roses and rainbows blooming too!
At dinner Lillian choked badly on a piece of pear. She’s choked on food many times, yet always gets it out pretty quick by coughing. She has poor oral motor skills and doesn’t chew food thoroughly.
She could not get it out last night and I panicked. Watching your daughter struggle for a breath and begin to turn purple is a dreadful and draining experience. Completely forgot what I know about assisting a person choking on food. After what seemed like forever, we finally got it out.
Then I had a huge meltdown being upset about that and getting caught up in my own melodrama. Thomas said exactly the things I didn’t want to hear and exactly what I would have said to either of them in that situation.
I cannot even express in words how blessed and grateful I am that we three are traveling this life’s journey together. Thank you Thomas for helping me to learn not to cling and to let “things” move on through me rather than hanging on for dear life …. I choose Happiness. That’s what I choose … xoxoxoxo
July 23 2017:
It was so amazing to see you face to face once again Kimberly Phipps-Nichol!! I’m so thrilled to have met Nguyen Tom Griggs also!!! You two leave me speechless. Blessed and grateful to infinity and beyond!! I love you!!!
And, yay, for seeing friends I had not seen in years! Wow!!! Great to see and chat with Glenna E Smith, Cheri Hill, Donna Holland, Johanna McClain, and Simantel!!!
Thanks everyone for a wonderful afternoon!! xoxoxo …
July 26 2017:
Plus, finally got a picture of Biggest Little Photographer for sale in the Visitor Center! xoxoxo
July 27 2017:
Finally got all the books packed! One doesn’t really know how many books one has until it’s time to pack them! YAY me! I’m getting rid of about 30 books! Thomas found about 5 to pass on. Lillian, well, it’s Lillian. She wants to keep everything. Onward! xoxoxo
July 28 2017:
Fingerprints done and turned in to Washoe County Library Administration so that Lillian and I can volunteer at South Valleys Library. That was the last step.
Took Thomas along for a mini field trip to the Sheriff’s office (for my fingerprints). Extremely kind people doing the fingerprinting!! He asked about 544 questions and she answered them all!!
Oh my gosh!!! She said “Yes”. Lillian has said “yes” to getting rid of something. She wanted a picture so as to remember it. This hasn’t been used in many years. We need to have a celebration!!! I am so happy when I get to pass something on instead of packing it. xoxoxo
July 10 2017:
Picked up a load of Biggest Little Photographer books this morning! He gets to fly to Chicago tomorrow. No luggage for you Biggest Little Photographer. You are your own luggage! xoxoxo
July 11 2017:
We made it! Early morning flight. We got to see the sun rise. Now just waiting for our room. Great flight. Great ride here.
Thank you Stacey Perez for having Lovey over for a vacation at The Perez Casa. And thank you times a million for picking up Rosey from the airport. It was great to be able to drive our own car this morning!
July 11 2017:
Spinach salad with red and green peppers, red onions, mushrooms, and roasted potatoes …. with a honey mustard dressing. Thomas and Lillian had more traditional pub items. Yet, so happy and grateful this was on the menu for me!!
July 12 2017:
They communicate nearly daily. One lives in Reno, Nevada and one lives in Kentucky. I got the countdown all day as to when she would arrive this afternoon in Naperville.
Finally!! They get to be together face to face!! I think Macy Miller and Lillian Darnell are kinda happy.
July 13 2017:
He waits all year to be a crazy kid with his sibling friends. Here they are off to a sibling outing. This makes my eyes pool with sweat. Love ….
Looks kind of messy in this picture, yet it was soooooo amazing!!!! Incredibly yummy bruschetta I had for dinner last night at a local place that donated 15% from the evening to The Chromosome 18 Registry. Thank you Bricks Wood Fired Pizza!! Thomas and Lillian loved their dinner too! xoxo
July 14 2017:
Swimming with friends for Thomas. And I got to meet Kunali! He was laser focused on where his dad went. I adore his ears. So cute! Then there was sitting on the couch and chatting and being silly with friends.
Making “music” after lunch. (Thanks Kerry Connelly for taking this one.)
Wee little walk around the hotel yesterday with Lillian. Beautiful flowers and a cool accidental photo. Plus, a flowers view of the hotel. Yay!! Fresh air and bits of nature. xoxoxo …
Favorite Chromosome 18 Conference comment so far: “I don’t think I can answer anymore questions Kati.” -Matt Miller (Debra Anne Kovacs) xoxo …. Love Ms. Kati!!
July 15 2017:
“This is why we come to the Chromosome 18 Conference!” – Wendy Waugh
Lillian and Chris having a great conversation!
Lillian Darnell did an amazing job interviewing with Chris of Special Books by Special Kids!!!!! You go Lillian!!!
Happy, happy, joy, joy …. xoxo …..
Picture of 18p- group …. xoxoxoxo
Farewell Dinner and Dance
July 16 2017
One more with Mr. Chris last night and a farewell photo with Mary Borucki. Wonderful people! Blessed and grateful!! xoxo
July 16 2017:
Wish we’d had more time to explore the Naperville Riverwalk. So incredibly beautiful. Only got one hour there before we had to make our way to the airport. The music from the carillon is indescribably amazing. Would love to have toured it! And that’s one wide tree! If I had known it was so peaceful and soothing, I may have been MIA from the conference. Oh my gosh!!
This one called for its own post …. “What We Need” ….
This spoke to me deeply. Time disappeared, all else faded. It was only these words, nature, and me. Be still. And know. xoxoxo
July 17 2017:
Approaching the Reno Tahoe airport last night in first picture. Somewhere over Utah or Nevada in the other pictures. Nature and love are incredibly beautiful and good for us. xoxo …
July 17 2017:
Just picked up Lovey, the guinea pig, from The Perez Resort (ran by Stacey, Eric, and Mason Perez). They are so good to her and Team TLC.
They clipped her nails and fed her all kinds of yummy fruits and veggies. She graced them with many great guinea pig sounds for all their efforts!
They picked up Rosey, Team TLC’s car, at the airport last Tuesday so I was able to drive us to the airport at 4:00 am Tuesday morning. They filled up Rosey’s tank; which hasn’t been full in quite a while!! They delivered Rosey back to us at the arrival pick up area last night at Reno-Tahoe airport!!
Thank you Stacey, Eric, and Mason! Y’all are the best and we are so incredibly blessed and grateful for your kindness and love!!! xoxoxoxoxo
July 18 2017:
Most “WOW” conference moment … We traveled nearly 2,000 miles from Reno to Naperville and met a mom and daughter (with trisomy 18p) from Grass Valley, California … about an hour and a half from here. It was their 1st conference! Can’t wait to visit them in Grass Valley! Virginia was born in 1961 and was diagnosed in 2012. xoxo
Best follow up comment to a session at the Chromosome 18 conference:
“The people who created the formulas and rules were drunk.”
Comment courtesy of Thomas after he and I had a discussion about John McGing’s SSI/SSDI/Medicaid/Medicare session. It’s enough to drive one to drinking … Cheers! …. xoxo
July 19 2017:
Fifteen Biggest Little Photographer books travelled by backpack to Naperville with us. Only three came back.
Oceans and oceans of gratitude to everyone for their support, and to Thomas and Biggest Little Photographer for being the Way for Team TLC to eat while we were there!
YAY for food! YAY for inspiring creations! xoxo
July 17 2017:
Unpacking the suitcase today. For tomorrow, it’s the start of packing to move.
I know not where we’re headed, yet, I have faith and knowing that come August 19th, I will know and it will be crystal clear … Surrendering and saying “Yes” to Life with a heart full of gratitude and love …
Let me know if you know anyone needing a solid wood queen size sleigh bed frame as this was it’s last stop with me. Time to let it go and allow myself more freedom from stuff … xoxo
Letting go of personal preferences and what I think and thought I wanted so that Life gives me the opportunities to say “Yes” to what my Heart and the Divine already know … Gives let it go a whole new meaning …
One moment in trust and surrender …. one moment not. Praying for more of the first. Tomorrow, July 19th, is the day I need to turn in our 30 day notice. Will definitely need strength, peace, and knowing that all is well.
**Update on 8.3.17** – I did turn in our 30 Day Notice and we move on the 18th or 19th of August. As of right now I don’t know where we will be moving. I will share as I know.
July 7 2017:
This has been Thomas’ first year of homeschooling and Lillian’s third or fourth year. The style of schooling we follow is more like unschooling, interest based, or child-led learning. It’s definitely not traditional homeschooling. Over the past several months I’ve had a couple of friends ask how homeschooling is going. Without any thought, I answered through my heart with this, “We are learning how to be kind humans and how to have healthy relationships.” [ 651 more words ]