Tag Archives: chromosome 18 deletion

The 2019 Annual Chromosome 18 Conference by Lillian Darnell

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August 6 2019:

Lillian is writing her own posts regarding The 2019 Chromosome 18 Conference. Here’s Part 1:

The Annual Chromosome Conference 2019: Part 1

August 11 2019:

Oh my gosh! You have GOT to read this! Had me laughing out loud! And, I didn’t know she had researched the elevators!! HA! She cracks me up!

The Annual Chromosome 18 Conference 2019: Part 2

August 15 2019:

Part 3 of Lillian’s blog post about the conference. She is incredibly dedicated to writing these posts! And, they are very thorough! Hope y’all are enjoying them!

The Annual Chromosome 18 Conference 2019: Part 3

August 18 2019:

Lillian’s recap of the C18 Conference – Part 4!!

The Annual Chromosome 18 Conference 2019: Part 4

August 21 2019:

Lillian is working so hard on these y’all! Thank you to those who are following …. Much love!

The Annual Chromosome 18 Conference 2019: Part 5

September 8 2019:

Part 6 of Lillian’s play by play of the 2019 C18 Conference … Another that made me laugh out loud, more than once … Give yourself the gift of laughter today, go read it!

The Annual Chromosome 18 Conference 2019: Part 6

October 2 2019:

She’s still at it! Always lots of details. Yet, this one is heartwarming and ends HaPpY!! Many photos from the farewell dance party as part of this post! Check it out!

The Annual Chromosome 18 Conference 2019: Part 7

October 10 2019:

She’s winding down! One more after this one. This girl’s got dedication! Part 8 of Lillian’s Conference posts …

The Annual Chromosome 18 Conference 2019: Part 8

October 16 2019:

Last one! She stuck with it and wrote about every single day of the journey to and from the Chromosome 18 Conference!

The Annual Chromosome 18 Conference 2019: Part 9 & Part 10

 

 

 

 

 

 

 

Respite for All of Us

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September 18 2019:

It’s been 3 months since I had respite. Lillian just left to spend 3 days with The Romano Duo. I’m always torn as to whether I should take a 3 day nap, madly work through the massive to do list, or do absolutely nothing (but read). Ha!!! It usually ends up being a combination of all of these. Thank you to The Romano Duo!!! …. Love you Lillian!! Enjoy your respite from Thomas and I!

Lillian Signing First Documents After Turning 18

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September 16 2019:

A huge first for Lillian Darnell. Who woulda thought it would happen so soon after turning 18. Her Service Coordinator from SRC came for a visit to have her sign the basic documents I had signed in the past along with one giving him permission to share and discuss with me. Here we go …

 

The 18th Birthday – Lillian Darnell

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September 14 2019:

We had another busy day as the 18th Birthday celebrations came to a conclusion. ♥️🌸🌸🌸🎉🎉🎉♥️

Eating cake and donuts and opening gifts. Followed by a quick September 2019 Date Day trip for fries and dessert.

Then back home for the live Facebook celebration. Which was hilarious as we had a lousy connection and had to keep restarting …. Five times!!! Hence, the 5 live videos on my timeline! Ha!

During the video Lillian shared 18 wishes for her 18th Birthday. Here they are ….

1. I wish Macy, Lauren, Kaitlin Baker, and Rebecca could come to Reno, NV.
2. I wish to be able to drink out of a cup/glass without a straw.
3. I wish to be fearless.
4. I wish for infinity art and crafts supplies.
5. I wish for infinity clothing.
6. I wish to be able to travel around the world with my friends and/or by myself.
7. I wish for the Earth to be healthy again.
8. I wish for the Earth not to die.
9. I wish to be less picky.
10. I wish to live with my friends.
11. I wish to be less vulnerable to spicy hot stuff.
12. I wish to have a dream home.
13. I wish to have a dream vehicle.
14. I wish to see Hawaii.
15. I wish to go to Florida.
16. I wish to have infinity photography supplies.
17. I wish to have more friends.
18. I wish to have two beds.

September 14 2019:

Lillian’s 18th Birthday Celebration …. We had a lousy connection so had to keep starting again as our recording ended!! HA! Each one is pretty short!

 

 

The 18th Birthday Week Celebrations

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September 9 2019:

Today’s 18th Birthday Week Adventures … When one turns 18, one needs new fairy wings …. Rose Gold Fairy Wings. One also needs a new sparkling silver star wand.

We also shopped for a store bought cake to take with us to The Romano Duo’s on Wednesday for the birthday celebration there. As we were leaving, the lovely floral person gave Lillian a bright, beautiful, pink carnation. ♥️🌸🌸🌸♥️

September 10 2019:

Today’s 18th Birthday Week Adventure ….

An afternoon walk in her favorite place on her favorite walking trail. 💚🌺🌺🌺💚

September 11 2019:

Today’s 18th Birthday Week Adventure ….

After the usual Wednesday library volunteering, a quick stop in the library garden.

Followed by a birthday dinner at The Romano Duo Casa! Delicious food and birthday goodies! A vanilla confetti cake and a chocolate “cheesecake”.

September 12 2019:

Today’s 18th Birthday Week Adventures ….

A trip to Wilbur May Arboretum followed by a quick stop at Audrey Harris Park and then home for a swim. 🌺💚🌺 It was incredibly beautiful and peaceful.

If I look completely exhausted by the time we have Lillian’s live Facebook party on Saturday, you’ll know why! All for a good cause … You only turn 18 once!

Audrey Harris Park and then Swimming:

September 13 2019:

Today’s 18th Birthday Week Adventures ….

A beautiful and relaxing swim. Tomorrow’s the big day!! Last day as a 17 year old! 💚💦💦💦💚

Now. I must make the chocolate cake for tomorrow!!

September 14 2019:

Lillian’s 18th Birthday Celebration …. We had a lousy connection so had to keep starting again as our recording ended!! HA! Each one is pretty short!

September 14 2019:

We had another busy day as the 18th Birthday celebrations came to a conclusion. ♥️🌸🌸🌸🎉🎉🎉♥️

Eating cake and donuts and opening gifts. Followed by a quick September 2019 Date Day trip for fries and dessert.

Then back home for the live Facebook celebration. Which was hilarious as we had a lousy connection and had to keep restarting …. Five times!!! Hence, the 5 live videos on my timeline! Ha!

During the video Lillian shared 18 wishes for her 18th Birthday. Here they are ….

1. I wish Macy, Lauren, Kaitlin Baker, and Rebecca could come to Reno, NV.
2. I wish to be able to drink out of a cup/glass without a straw.
3. I wish to be fearless.
4. I wish for infinity art and crafts supplies.
5. I wish for infinity clothing.
6. I wish to be able to travel around the world with my friends and/or by myself.
7. I wish for the Earth to be healthy again.
8. I wish for the Earth not to die.
9. I wish to be less picky.
10. I wish to live with my friends.
11. I wish to be less vulnerable to spicy hot stuff.
12. I wish to have a dream home.
13. I wish to have a dream vehicle.
14. I wish to see Hawaii.
15. I wish to go to Florida.
16. I wish to have infinity photography supplies.
17. I wish to have more friends.
18. I wish to have two beds.

Celebrating the Number 18

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September 14 2019:

The Number 18

Today is your 18th Birthday.
Lillian Paige Darnell is 18 years old today.

I can still see you in my mind’s eye
as a wee lil 4 pound sweetheart
as I wondered and dreamed
about your journey to adulthood.

Wow! Did we take giant
twist and turns,
paths less traveled.

Little did I know as I snuggled
you close, sang to you (sorry about that),
and read, read, read to you;
that the number 18 would come
to be a powerful number for you,
for us, in more ways than we could imagine.

When you were 3 years old,
As we sat eating dinner,
As the phone rang,
As the pediatrician delivered
news – 18p- she said,
missing the short arm of
chromosome 18, she said –
that rendered me speechless,
with tears sliding down my face
into a dinner I could no longer eat.

Little did I know at the time
that this was not the horrible
news I assumed it to be.

Oh yes. Life changing, for sure.
Yet, not in the way my mind
led me to believe in those first few weeks.

There is no way on this Earth
I could have foreseen how
life changing this would be for me.

Life changing for me so as to
let you be who you came here to be.
For that to happen unconditionally
and organically, I had much learning to do.

Not just learning about genetics,
chromosomes, DNA,
and the effects of deletions of genes.
That was the small stuff compared to
the enormity of the path that lie ahead.

As you step into adulthood on this day
It is my deepest hope that
I have made more decisions for
the highest good, than not.

It is my deepest hope that the times when I have
remembered to share and be unconditional love
stand out and far outweigh the times when
I have not been at my best.

May the wishes you wish come true.
May the dreams you dream become reality.
May the sunshine light your way ever more.
May the moon teach you it’s secrets.
May the birdsong always sing sweet melodies to your heart.

May you step into adulthood
with iridescent rose gold fairy
wings of the highest and brightest
as you take flight on the next
greatest adventure of your life.

I love you
I honor you
I respect you
I am grateful for all that you
have taught and continue to teach me.

You are You
And You Are Perfect!

Happy Happy Happiest of Birthdays to YOU, Lillian Darnell!

Love,
Camilla
Mom

Lillian Darnell You Did It – Keep Believing

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September 8 2019:

I am way, way late in creating this for Lillian. I had wanted to write something special, paired with a photo collage; and finally took the time to focus on it. She has seen and read this, likes it, and approves of sharing! 💜🎉

Dear Lillian,

I am proud of you.
I love you.

You did it
You continue to do it.

You shine that bright sparkling smile
Upon all who’s eyes you meet.

You did it!
From high school
You have Graduated!

You, we, did it different.
And, that is okay.
In fact, it is perfect for we.

Not everyone is meant
to do life as it has always been done.

This is what creates
the rich and vibrant soup
of human life.

There are those who follow the path
of doing it different.
There are those who follow the path
of the way it’s always been done.
No path is better than the other.
Whether the same path as another is
followed or a different path is followed.

The paths are equal.
Yet the benefit to humanity
is vast in the variety
and depth of ideas,
the dynamic expressions,
that bloom when each of us
travels the path of our hearts.

You continue each day
in the face of chronic pain,
communication challenges,
depth perception and balance difficulties,
fine and gross motor awkwardness,
emotional struggles,
indecision worries,

You continue each day
with that bright sparkling smile.

You continue each day
Knowing what you want in this life
Knowing what you want to achieve
Knowing how you want to live

You continue each day
meeting all that life has put forth for you.

I honor you.
I honor and support the fierce
warrior within you who
knows her heart’s desire.

I honor you.
I am proud of you.
I love you.

YOU DID IT!

Happy Graduation to YOU!!

Love,
Camilla
Mom

So Begins the Week Long 18th Birthday Celebration

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September 7 2019:

I remember when I was a brand new single parent when Lillian was 5 years old, hiding in the garage and sobbing, thinking how am I going to do this? How will I do this alone? Well, here we are …

Photo from Lillian’s graduation photo shoot …

Tomorrow begins the week long celebration of her 18th Birthday happening on Saturday, the 14th. She has a mile long list of things she wants to do for her birthday so we are having a week long celebration to make it all happen.

This one has an incredibly tender heart. She was sad and disappointed that many at the C18 conference were not aware she had graduated as they were asking what grade she was in now. So, if you missed the millions of posts I posted around that time, here’s your chance to get caught up! HA! Lillian GRADUATED from high school on June 1 2019!! YAY!! And, she turns 18 on Saturday, the 14th. Be ready for a deluge of posts dedicated to her.

This was the perfect spot for the first set. The little garden behind the library. We’ve been coming here ever since she was 5 years old.

I’ve taken tons of photos of the three of us in this little garden throughout the past 12 years.

The New Place While Making My Way Reading

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August 12 2019:

Got to see the new place this afternoon .. styling with the orange vest and hard hat!! Less than a month now … We will lose a few great aspects of this place and community; yet, will gain great aspects that this one does not have. 🎉🎉🎉

August 13 2019:

Making my way through the “to do” list for this month and September. With Lillian turning 18 in September and our move in September, there’s much that needs addressed.

After two days spent educating myself about the qualifying aspects of SSI, I think I can check that one off the list. What a relief and weight off my shoulders for that one!

Now to address a call today that due to an agency losing paperwork that I followed instructions for submitting, and for which Lillian has received services for 2 months; they have decided she has to get on a wait list since they lost the paperwork the first time around. Tomorrow. I will deal with you tomorrow. I’m on a roll!! Bring it!

August 15 2019:

Currently reading. One is the second time around. I have different books for different times of the day. Two for early morning reading and one or two for before bed. How about you? What are you reading? Do you read different genres for different times of day? Or is that my special thang? Haha!