Being a parent on this journey is tough. Every day feels like an uphill battle; emotionally, mentally, and physically. This transplant journey has been filled with so many twist & turns with so many scary moments that have been traumatizing. The only time Mom gets to catch a break is during those long drives between appointments. This week, they are traveling five hours for a second opinion. This is what their week looks like:

Monday,
10am echo
11:20am echo
12pm cardiology
1pm lunch
2pm dietary
4pm surgery

Tuesday,
8:30am liver
9:30am transplant finance
10am social work
11am lunch
11:45am neurology
1:30pm hematology

Wednesday,
9am pharmacist

Thursday,
8am nephrology
10am anesthesia
11am lunch
12pm behavioral medicine clinical psychology
1pm infectious disease
2pm living donor coordinator

This normally changes with more appointments added.

It seems like there is always something else wrong & that it never stops. His primary nephrologist doctor thinks that he may now need a liver transplant. They brought up doing the transplants all at once, adding to the fears and uncertainties. His dermatologist also thinks he may have psoriasis, which is incurable. This poor baby never gets a break. Mom’s brain never stops thinking of all the what ifs & trying to make sure her son gets the best care.

Their whole life has changed & they barely get time to spend with the rest of the family. Mom tries so hard to spend time with her daughter but having to be the primary caregiver & so many appointments, when does she have time. It’s such an exhausting journey. She has shed many tears watching her son go through this, her heart hurts to watch him have such a rough journey so young & add in the mom guilt of not being able to be with her daughter as much as she wants.

Her son’s journey has transformed her into a superhero of sorts. She juggles the demands of caregiving with grace and determination, never allowing her own fears to overshadow her son’s needs. Despite the chaos, she still finds moments to create memories with her family. Last week they went to the zoo. Amari was so excited to see the gorillas & the cheetahs. She tries her hardest to break up the monotony of day to day life. Amari’s excitement lit up the day. It’s these moments of happiness amidst the chaos that keep them going.

This journey isn’t easy. It’s filled with fear, uncertainty, and exhaustion. But they refuse to let it defeat them. Mom is determined to give Amari as normal a childhood as possible, despite the challenges they face. Their resilience is nothing short of inspiring. They refuse to let these struggles define them, choosing instead to embrace each day with love, courage, and determination.

Watching them on this journey has made me realize how much I take my kids’ health for granted. I truly admire the whole family’s strength & resilience. They have come together to help support in every way possible.

Their journey wouldn’t be possible without the support of loved ones and the generosity of organizations like COTA. To learn more about how you can support COTA for Amari’s Journey as he awaits his kidney transplant, please visit: https://cota.org/cotaforamarisjourney/

Join Amari’s journey on Facebook to stay updated on his day-to-day life and continue showing your support. Follow this link to his Facebook profile: https://www.facebook.com/profile.php?id=61556251717859

I also want to say thank you for taking the time out of your day to read along about Amari & his family’s journey.