Carly-Q's Mom

11/06/2024

Nearly four weeks ago, my 14 year old angel face died in my arms, in my bed.

Her heart enlarged, her liver growing wildly with the fluid buildup from her weakening left ventricular. Blocked carotids, occluded renal arteries and diffuse coronary stenosis. Progeria ages kids 8-10 years each year, taking them like the elderly.

She didn’t want the wheelchair, she didn’t want to skip school, she didn’t want special treatment. She wanted to love and be loved, she wanted to surround herself with family and friends, nourishing her body with good food, music and all the expensive beauty products. Her make a wish opportunity was approved, but she couldn’t think of a single thing she wanted, and so we rested, read, tiktok’d and laughed as much as we could.

I am so proud of my girl. And my heart is shattered into a zillion pieces. Watching her age at the speed of light, and knowing she saw it too was very hard, nearly unbearable; but we did our best to honor the time we had.

If you know me, you know about the Carly plan. Now I find myself without purpose and missing my co-conspirator.

I’m incredibly proud to be Carly’s mom. It has been my honor and such a privilege to guide, protect, love and cherish her. I pray that she’s not scared, that she’s happy, capable and safe with her physical body no longer holding her back.

I could not ask for a better village to grow up in, to support her, to cheer her on, to lighten her load, to care and comfort her and lift her up. But also in her decline, her death, and her legacy.

My plan now is to practice gratefulness for all that I have learned from her life, and from the uncharted motherhood path I walk.

04/10/2020

Celebrating children’s hospitals this week. We are thankful for our team of caregivers every single day. But this. This is more than we could have the nerve to ask for. And yet our team is more determined than ever.

Please take a moment to support 170 children’s hospitals across the US and Canada. Kids like my Carly literally cannot wait.
Change kids health. Change the future.
Children's Miracle Network Hospitals

01/20/2020

Yes!
Do a budget like you would for finances. Start with 24 hours in the day. Subtract sleep. Then work / school. What else do you need to subtract on the daily?

I believe that if one isn’t living, loving and working toward your dream - every single day, that means everyday you’re not moving the ball forward. I think it’s easy to get caught up in the daily amortization of financial planning. To me, that’s the main issue of a capitalist mentality. Let us rethink what “must” be done between birth and death.

Instead of working to sock money away, to buy proactive insurance - whether retirement, health, life or auto, only to depreciate all your assets in doing so - this is our economy. The 1%’ers win here while the middle class is stretched thinner and thinner. This trend isn’t sustainable - our bodies, our planet, our harmony will not survive.

12/06/2019

Friends, we've been too quiet, too long. That changes now!

First things first:
Carly is 9 and in the 4th grade now. She is loving school, growing in confidence, experience, leadership and she is laughing every day. Carly holds an elected position at school, gets up & ready each day*, and strives to stay ahead of the academic schedule. She experienced girlscout camp for the first time, lost her FIRST baby tooth, and experienced her first TIA a week before Jer died at Cleveland Clinic. We went to camp, and she ziplined again, hung with Meghan again (who began her studies at EMERSON this past fall, just having returned from her 2 week stint in London. By herself. Pause for effect.)

I want to share more about these 👆🏼👆🏼👆🏼 events, and why they were so special. But time just keeps on zooming. 8-10 times faster than nearly everyone else on the planet. So there's that.
Couple pics of the past few months. 🙏🏼🧘🏼‍♀️✌🏼

Next: thank you’s.
*mostly
❤️

07/19/2019

Some amazing auction items from our friends at GRACE! National grace Foundation 🙌🏼💕

Bid on auction items in the NATIONAL GRACE FOUNDATION fundraising auction to help support this cause.

06/16/2019

Happy Fathers Day my friends!

In honor of all the Dads who impact our lives, please take a moment to be ONE to make a cure for rapid aging POSSIBLE.

Thank you for supporting our past partnership with Foodie Cards. If you are like me and forget or lose them right after purchase, please send your entire $30 to Progeria Research Foundation. Better yet, do it right now and catch our friend Kaylee up. She’s got a $4000 goal.

https://app.mobilecause.com/vf/ONEpossible/team/TeamKaylee

Thank you!
Love on.
❤️✌🏼

Please be ONE to make the cure POSSIBLE! Join me to help children with Progeria. Find out more and donate here: http://igfn.us/vf/ONEpossible/Root1379416

06/13/2019

Which came first- the chicken or the egg? 🤷🏼‍♀️🥚🐣🐤🐥🐔🐓

The Children's Miracle Network Hospitals team thought this tiny clip would brighten our day. It made mom belly laugh... (OUT LOUD). BLOL?

This is "Carly's chicken egg" by CMN Hospitals on Vimeo, the home for high quality videos and the people who love them.

05/28/2019

Can you see me?
Let me tell you a story about the tall giraffe and tiny elephant... 🦒🐘

The Toledo Zoo Lial Catholic School

05/13/2019

Did you have a wonderful ?

I woke mom up with a gift and gave her flowers. (Thanks Dad & Mrs Ellis for your help!) Then we took fresh lilacs and gluten free flour to Mema because she's a crazy baker. It was a quiet day, and it's stillllllllll raining.

How did you all celebrate?