For Charlotte, With Love: Our journey with Shprintzen-Goldberg Syndrome

11/24/2024

Happy Holidays, With Love, The Patts ♥️

This post felt needed as a reminder, it’s ok to still grieve your loved ones even as the seasons change and life around you speeds ahead. Your love for them never ends 🌈 A few months ago, we finally watched Moana again as a family, Charlotte’s favorite. Yes this damn near took me 3 years to do. Our youngest was interested and with Moana 2 coming to theaters we wanted to show her. Ofcourse, she loved it, especially Maui, also Charlotte’s favorite. And it did feel good to watch to again, knowing how much of a comfort it was for Charlotte. My husband went and found Charlotte’s Moana doll from her storage bin and gifted it to our three year old, who has only a handful of memories that live as pictures and stories we share of her sister. She tells us often how much she misses Charlotte and the grief that tumbles off her little heart is almost more than I can bear at times, something I never quite expected… We have tickets to go see the new movie in a week and there’s no doubt there will be smiles and laughs and likely a few tears. 🥲 We miss you sweet girl, it’s hard not to wonder what life might be like if you were still here. You will always have a place in our hearts and minds.
To quote another favorite of Charlotte’s I’ll end this post with the lyrics of a song from the movie Coco. Remember to be kind especially over the holiday season, you never know what someone else may be going through ♥️

“Remember me, though I have to say goodbye
Remember me, don't let it make you cry
For even if I'm far away, I hold you in my heart
I sing a secret song to you each night we are apart
Remember me, though I have to travel far
Remember me each time you hear a sad guitar
Know that I'm with you the only way that I can be
Until you're in my arms again, remember me”

10/08/2024

02/29/2024

Happy heavenly Birthday Charlotte ♥️♥️♥️♥️♥️♥️♥️

11/24/2023

We hope everyone had a nice Thanksgiving! We are thankful for organizations that help kids of varying abilities feel included so today we are making a holiday donation to Santa's Little Hackers in memorial of Charlotte ♥️

Have a wonderful holiday season 🎄 Love, the Patt family

https://www.santaslittlehackers.com/donations

09/26/2023

Sometimes one simple picture reminds you of how much time has passed and can trigger relentless tears. Today is one of those days where the wave of grief comes and it comes hard. So we cry and we doodle and we cry some more. Our days might look different now, but you are always in our hearts Charlotte ♥️

05/20/2023

Charlotte’s memorial flowers this year ♥️

05/08/2023

We could not have made this donation without all the love and support we were given with Charlotte. Although this project may not directly impact your community we would love if you could share the post in memory of Charlotte! Her happy face needs to flood the internet with this message for equal play today ♥️

Love - The Patt Family 💜💜💜

03/28/2023

Sharing because these inclusion shirts are amazing! You can get it without the website on the shirt too ❤️🧡💛💚💙💜

🚨AtTeNtIoN🚨 another great fundraising opportunity! Simply purchase a custom designed tee and part of the proceeds will be donated back to the project! Many great styles and colors to choose from!

https://nine20designs.com/Vendor/play4allfdl/?v=7516fd43adaa&mibextid=ncKXMA

**Please like AND share this post**

02/28/2023

Today would be your 6th birthday, the second one in heaven, Missing you our sweet girl ♥️It is also Rare Disease Day and we celebrate all that you overcame during your time on earth with us and all that your life taught us. We send our love out to our “SGS family” a syndrome diagnosed/affecting roughly less than 100 people worldwide:
https://rarediseases.org/rare-diseases/shprintzen-goldberg-syndrome/)

Today we are making two very special donations in your honor. The first is to your elementary school PTO organization. They have a huge goal of building a new playground for the school/community, a playground you could have played on with your siblings & classmates: Play4All FdL
https://www.play4allfdl.com

The other is an organization that donates modified toys at Christmas time to those who use a switch activator: Santa's Little Hackers
https://www.santaslittlehackers.com

✨ If you are feeling in the giving spirit and want to make a donation in honor of Charlotte or another loved one, here are direct links to these 2 organizations ✨

https://account.venmo.com/u/Play4allfdl

https://www.paypal.com/donate?token=5yYiwv6x41NEbe7wixPfb5t8sO-r3w8q2r9lO7VkV2dPCS5HiCiHEyjdW3wY3S0cCGMzxD8JwrPEYY7i

We love you Charlotte, always and forever 😘

02/15/2023

One year

I enjoy anniversary dates, but this is one I’ve been dreading, telling myself it’s just another day and it doesn’t need to weigh more or less on us than the last 11 months already have, but one year of no new memories with you feels like hell. All the sibling pictures you’re missing from, no favorite soundtrack or movie of the week on repeat in the house… Although my body and mind no longer wake in panic because I can’t hear your ventilator, or feeding pump, or the smacking of your lips, the simplest of things can still stop me in my tracks with sorrow and pain. You are still felt everyday in our hearts and we miss your beautiful sassy self Charlotte, we all do so very much.

We would have found a way for you to see your sister in her first ever musical, Frozen Jr, over the summer and you would have loved Olaf in it. Your brother would still leave you random cars or Pokémon figures to play with and he would have protected you something fierce from your even sassier hurricane of a little sister…. AND I know lil sis would have gave you the best hugs. Dad misses singing to you and me, well, I feel so lost not caring for you. We hope that your soul is happy and at peace. Until we meet again sweet girl ♥️

- Today we each looked through your photo album and picked out a favorite memory to share

Dad’s pick is on your 2nd birthday, we all squished in for a photo and got a big smirk out of you.

Novella’s pick is of Hank and you in the van, he was always at your side to protect you.

Wyatt’s pick is the rainbow photoshoot we did because of the bright colors and you look so happy

Mom’s is a random day that you and your sister were hanging out, but you were constantly throwing your hand off your lap, that Sass ☺️

01/05/2023

It’s been more than 6 months since I’ve posted on this page. I have wanted nothing to do with the medical world and realized how much I was suppressing my nerves / fears through all the years with Charlotte. In constant battle / survival mode. Since fall, our youngest has needed a “simple”tear duct stent procedure and has dealt with ear infections. I now have zero chill when it comes to hospitals, doctor appointments, and illness. Needing to advocate has had me on the verge of tears, but I’m posting to say that it is 100% necessary and worth it ♥️

If you are living the medically complex / rare life it’s likely you are feeling hopeless, overwhelmed, and alone and I guess I just want to gesture a gentle hug and reinforce that you are not alone. Reach out and find a way to cope, build a community that surrounds you with nothing, but love and hope. It is within this that you will find the strength for yourself and your loved one through the most difficult of times.

May 2023 be a kind and peaceful year - Love the Patt family