Perfectly Imperfect: Navigating Life as a Special Needs Mother

09/10/2025

https://rareatives.com/2025/09/09/fighting-for-fcas-awareness/

Despite managing her own chronic illnesses, military spouse Kenzi Cabrera continues to push for familial cold autoinflammatory syndrome awareness, because her son deserves care.

08/02/2025

The official tally is up from our Josiah Strong - Autoinflammatory Awareness Bamboo Pajamas collaboration with Whimsy & Co Bamboo 🐻

We are so happy to say we raised 200$ to give back! I plan to donate this money to one non profit that is near & dear to our heart, Children's Miracle Network Hospitals at Monroe Carell Jr. Children's Hospital 🤍

Josiah has been a CMN child since before his FCAS diagnosis and without them, im not sure how we would’ve gotten through the ICU stays, the long travels to doctors, even gotten his medical wagon through CMN. We are very new to Vandy’s CMN but we are so excited to splash into this pond.

Thank you to everyone who bought the pajamas, I cant wait to see pictures! ✨🤠

07/23/2025

How fitting is it that Autoinflammatory Awareness month is coming up and we got the go ahead that the Josiah Strong BAMBOO custom pajamas are UP & RUNNING!

Ive worked my butt off to find a bamboo person to bring my vision to life, and here we are.

Thank you, Whimsy Wave Seamless • Whimsy Wave Seamless VIP for this.



To Order:
https://www.facebook.com/share/g/16aaSu6seR/?mibextid=wwXIfr

07/18/2025

Having a son who has a incurable disease and needs to take daily injections to give a healthy life - we are always looking for ways to keep him calm and we are so thankful for . Worry Pals sent Josiah little worry dolls to hold onto for his injection but also a Worry Pal book to read all about his friends and a diary journal so we can document his feelings, needs, wants, emotions.
Thank you Worry Pals for being so good to our community!

07/08/2025

Miss Alaiya had her first model call for Crane Baby 🤍

We know first hand how amazing this nursery company is! From the quality, the designs but what truly sold me is that they are eco friendly and organic.
I highly recommend this brand to all my parents out there! 🎀



📸: Sierra Ruiz Photo Company

07/01/2025

Unbox Josiah’s injection package from Vandy with me. How fitting it got approved and delivered on the first day of Juvenile Arthritis Awareness Month 💚 🫶🏽🔥

07/01/2025

july is juvenile arthritis awareness month 💚

josiah suffers from Polyarthralgia which is arthritis and joint pain in multiple joints due to his rare genetic disease, familial cold autoinflammatory syndrome.

2 years ago Josiah couldnt walk up and down the stairs, has a limp or sometimes couldnt bare weight on his legs due to how severe his pain was, fast forward 2 years later.. we cant keep up with this child.
Anakinra (Kineret) saved our baby boy’s life. 🫶🏽

🤍

06/30/2025

Our yearly “Josiah Strong” shirts are up! 🧡

Celebrate Autoinflammatory Awareness Month & our Josiah with a shirt! 🥰

Josiah is an inspiration to many of us and such a warrior.

**All proceeds goes back to researching for AID’s**

https://www.monkeybearclothing.com/boys-girls

06/29/2025

Exciting new adventures are coming to life!
I joined and collaborated with a local non profit organization Fort Campbell Spouses' Club!💙

As yall know our medical journey has been a world wind from Josiah’s rare disease diagnosis and both Jayse & Josiah having autism, I been working effortlessly finding ways to get our mission out there!

Coming to Fort Campbell i’ve found we needed more inclusive activities, sports, events and even parent meet ups. I’m so excited to work with this group of beautiful women to get the ball rolling!

** If any of my local special needs families have any ideas or visions you want to see please drop them in the comments!**

🎀

06/02/2025

As yall know my sweet baby girl is a rep for Hair Bows By Jen and look what is going to drop soon… 🫣😭

Jennifer Long is bringing a “Inclusive” hair bow line for families like ours.. Come join the group & snag a tag from Alaiya & I so you don’t miss this exclusive launch! ♥️

05/27/2025

Very humbled 💙 • When I started this journey 3 years ago, I was a mother who just we through the worst 22 month of her life. I had to fight so hard for Josiah to get the diagnosis, care, treatment plan, and a good set of doctors.. I had to create his team. When your a medical mom, life doesn’t just stop. Either you are strong and keep going, or you will drown with the tides.

After Josiah’s rare disease diagnosis, I enrolled back into school for my RN, and I looked at ways I can change tides for incoming families who needed that support.. So when they came to me about joining these boards/councils.. I couldnt say no.

The last two years i’ve had the absolute privilege sitting on the pediatric family advisory committee, and two quality improvement boards - pediatric pain management & pediatric blood draws for special needs individuals. 🫶🏽 The amount of knowledge i’ve gained working with not just Jojo’s team but these set of doctors , staff , and other dedicated parents.. it’s absolutely incredible.

Coming home to this piece of mail, it’s more then a paper.. Its a testament that i’m doing something right in this world. I can’t wait to get my Nurse Practitioner degree & really change some lives for good. 🤍

05/20/2025

Alaiya is a rep for Hair Bows By Jen and my girl Jennifer Long made us a custom bow to support her brother Josiah 🧡 Thank you always to my other girly Jessy Wong who makes the Josiah Strong & Autoinflammtory designs for our family!

I cant wait for her to wear this in July for Juvenile Arthritis Month, August/September for Autoinflammatory Awareness Month (US & International), and February for Rare Disease Awareness Month 🫶🏽