♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥
Today is Rare Genes Day… I should probably make a post about the several rare genetic conditions and diseases I deal with daily like I’ve done so many times in the past. But this year, all I can think about on this day is how grateful I am to be loved the way I am but especially by the three souls in these photos. My precious loves. How grateful I am that no matter how many times these beyond frustrating genes of mine misbehave- I’m still here. I’ve survived so much that others probably couldn’t imagine and a startling amount that we simply keep to ourselves. My diseases can be overwhelming and scary if we let them but my loves give me the strength to continue being myself and to face no matter what comes. I am so ridiculously aware of how lucky I am to have that because I do also know/remember what it felt like to try to tackle it all on my own.
♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥
♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥
So today my wish is that everyone who shares my diseases could have an Addie to make you feel safe in your own body, who never leaves your side and fills your days with silliness. A Stanny (even if he’s no longer physically here with me now) who loves so hard he makes you also believe he can snuggle the pain away and soak up all the sadness. A Kyle who manages to add magic into the hardest days, who forces you to celebrate yourself and your hard earned victories which includes every single year you get to turn a year older. That special someone who roots you on and shows up for you. Who somehow manages to fight medical battles for you- no matter big or small- never letting their current geographical location/time difference/ crazy work schedule stop them because they know how exhausting it all becomes. And friends. True friends. The type who are so much more and who don’t view or treat you as a burden. The ones who want to be in your life. Who show they want to be there with their actions as well as their words. The type of friends who make your heart happy and somehow lessen the burden you feel deep down in your soul- simply by being them. They aren’t easy to find but when you do… hold on tightly. My wish is that you find the ones who show up. That you find those who feel like they belong with you – both humans and animals, of course. 🐶🐶🩵
♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥
♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥
But most of all- I hope you find those special souls that make you feel alive. Who remind you HOW to live while fighting these battles. Who make sure you laugh every day because it is often the best medicine. The ones who check in with you. Who have made it easier to find the joy in life. The ones who make you want to never stop fighting because you always want to return to the life and home that feels safe and sounds alive. The one that they’ve helped you create. I hope you find this magic.✨
♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥
Fighting rare genetic conditions barely anyone understands is so hard that describing it in words does not seem possible… but I do know it’s easier if you are able to surrounded yourself with joy and a little bit of magic. These illnesses have stolen one of my best friends and several other friends I made along the way the past decade. Those losses never get easier but deciding to embrace life for them and all the moments I feel were stolen from them far too early- helps. I don’t choose joy and appreciation because I know they would want me to.. I choose it because I still can. My rare genes can never steal that from me.
Finding magic in the small moments is the simplest act of rebellion against a bunch of rare diseases determined to steal my joy. I made a choice a long time ago to never let these illnesses steal who I am. Now by surrounding myself with magical, loving souls- I’m always able to find myself, my appreciation, my joy and even my own magic on my worst days.🦓✨🩵
♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥
Stanley Ray (of Sunshine) Doverspike☀️
11.16.2021-10.28.2023
♥
Our Forever Puppy 🌈💔
No more pain ever again Bub.
Mama loves you & will miss you forever my special baby boy.
I’ll find you in the sunrises Stanny.🩵
♥ ♥
Simply Macy 