Warrior Mama Spotlight: Ms. Tina Jackson, Founder of Kids Rare Care

You ever meet another Mama who just carries a light around her? And you can tell that wisdom she shares isn’t something pulled from parenting books, but actually lived? Well, those two sentences do not begin to scratch the surface of this amazing Mama Warrior I met on Instagram some months ago: Ms. Tina, founder of Kids Rare Care! Her heartfelt mission is “helping Mamas new to their child’s medical journey find calm, courage, clarity and confidence.”

Ms. Tina so beautifully uplifts the intersection of her strong Christian faith and advocacy. The heartfelt videos she shares on Instagram often meet me when I need them most - offering not just hope, but concrete strategies for navigating disability parenting, and putting my own faith in God as a progressive Christian over fear.

Ms. Tina is a gem! And I cannot wait for you all read more about her, and the awesome Miss T, a beauty who sparkles with joy! She embodies our guiding mantra at When Motherhood Looks Different: “The most powerful sentence you can say to another Mama is I see you.”‍ ‍Ms. Tina sees us, Mamas, and she cares deeply!

Ms. Tina and Miss T (photo courtesy of Ms. Tina)

What is Miss T’s diagnosis?

My daughter Tionna Jackson (aka) Miss T was diagnosed at birth over 30 years ago with a genetic rare disease called Trisomy 8 Mosaicism.

Share your journey with us. What are some of the challenges you face parenting Miss T (some of which are invisible), and how do you move through them each day?

Motherhood looked different for me from the very beginning. I was told my daughter most likely wouldn’t survive. Then warned if she did, she would have a low quality of life.

Those early words shaped years of me operating in fear, uncertainty and silent grief. For the first 6-7 years I carried an invisible weight of anxiety, hyper vigilance, decision fatigue, and the constant internal pressure to get it right.

One of the hardest challenges of walking our rare disease journey is that much of the battle is unseen.

I was managing appointments, therapists, insurance battles, school systems, and so much more while still being a wife, mother, daughter, sister, friend, community member and human being.

One day it occurred to me that -

I couldn't control the diagnosis, but I could influence the direction of the journey.

I realized God determines the outcomes, and it is then that I made a complete shift from survival mode to intentional faith-filled advocacy.

I stopped waiting for someone to rescue me and stepped fully into my new identity and role of advocacy to be my daughter’s voice, protector and guide.

Each day I move forward by choosing courage over fear, strategy over panic, and faith over doubt.

What tools do you tap into for strength and grounding?

For me, my navigator kit includes persistently studying my Bible to understand how to apply God's Word to our situation.

Also, I believe God is my ultimate authority; and faith plus prayer are my handy dandy tools. It just makes sense to me that God created me and my child, so I ask Him to help with the challenges we’re facing. And He never disappoints.

What are the joys and gifts of your parenting journey?

One of my joys is that I finally pleasantly accepted I have been divinely assigned the task of parenting a uniquely gifted child who has medical complexities. For example, my daughter on most days is full of joy, and makes it her mission to make other people’s day. Of course experiencing joy is wildly contagious even if it’s just for a moment!

‍ ‍ Miss T brings JOY! (Photo Courtesy of Ms. Tina)

A younger Miss T (photo courtesy of Ms. Tina)

What have you learned about yourself as a human being, and Mama along this journey?

I have learned I am strong and resilient through the powerful works of God.

[And] that even when I doubted I had no idea I already had everything I needed to continue walking our journey successfully.

Another Mama on a neurodivergent parenting journey is reading this blog post today, and I would love it if you shared some words of encouragement with her! 

Dear Mama, It is already written. You’ve already won!

I encourage you to fully embrace the stewardship of parenting your child with medical complexities. Listen and observe everything.

Study your Bible and dig a deep reservoir of faith to draw strength. Always remember past testimonies of God’s healing and deliverance; show gratefulness because He will never fail you.

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Stay connected with Ms. Tina and Miss T on Instagram @RareKidsCare and don’t forget to check out The Rare Reader, a bi-monthly newsletter which supports families navigating rare disease, medical complexity, and undiagnosed journeys with their child. Each issue shares vital resources and information (proud to be a subscriber!). And if you don’t have time to read, Mamas, you can just hit play, and listen to the recording on the go. Oh, and check out this short video that goes more in depth about Miss T’s story on Vinemo.