đ A Motherâs Day message from one exhausted mother is leaving thousands in tears tonightâŠ
My phone pinged yesterday.
It was an update from a worried mom on Motherâs Day.
I felt sad that Tasha Johnson and her husband Stewart were so overwhelmed on Motherâs Day.
And of course I was heartbroken for their daughter Eleanor.
It was April of 2024 when then-28-year-old Tasha Johnson gave birth at USA Health Children’s & Women’s Hospital in Mobile.
She had learned at 30 weeks about her daughter’s condition, so Tasha prayed, asking God that her baby be born healthy.
“I leaned on my faith when I was expecting, so I decided to name our baby Eleanor Faith,” said Tasha.
It’s called Osteogenesis imperfecta- it’s a genetic bone disorder that is present at birth- it’s also known as Brittle Bone Disease.
A child born with OI has soft bones that easily break.
It’s a lifelong condition.
Eleanor Faith’s parents Tasha and Stewart were hopeful and ready to help when the baby was born.
“Eleanor Faith broke 7 bones at birth,” Tasha told me.
“She suffered 2 broken legs, a broken arm, multiple broken ribs and a skull fracture,” added Tasha.
Eleanor Faith spent 67 days in the NICU.
Braces and ACE bandages and casts- it was a harbinger of a life to come.
It was months ago when Eleanor Faith hit a growth spurt, and it resulted in more breaks.
“In the last several months, Eleanor Faith has suffered a broken rib, a broken jaw and a broken arm,” said Tasha.
“Eleanor Faith recently broke a rib in her sleep. I know that scream when it happens,” Tasha whispered.
Eleanor turned 2 last month, and the Johnsonâs have just finished up a trip to Atlanta where they hoped for good news before heading back to Baldwin County, AL.
Tasha sent me the update yesterday:
âWe finally got answers for Eleanor, but honestly, the reality of those answers has been devastating to process as parents.
âThe specialists at Childrenâs Healthcare of Atlanta found severe instability and deformity in Eleanorâs upper cervical spine around her C3 and C4 vertebrae caused by her Osteogenesis Imperfecta. The imaging showed severe narrowing around her spinal cord along with concerning signs of pressure on the cord itself.
âHearing doctors use words like âsevere spinal stenosis,â âcord compression,â and âspinal cord edemaâ while talking about your 2-year-old baby is something that absolutely shakes you to your core. They believe this is where her unexplained pain is coming from.
âAt the same time, this is exactly why we fought so hard to get her to the right specialists. We knew something was wrong, and now we finally have a team experienced enough to help her. For that, we are incredibly thankful.
âAt the end of this month, Eleanor will return to Atlanta for a major cervical spine surgery and recovery process. Before surgery, she will first spend several days heavily sedated in the Pediatric ICU in a weighted halo traction system so doctors can slowly and carefully stabilize and realign her neck before surgery in order to protect her spinal cord as much as possible.
âAfter surgery, we are looking at a very long recovery and inpatient rehabilitation stay. Right now doctors are preparing us for approximately two months in Atlanta minimum, though with hospital life and complex healing, it could potentially be longer.
âI think one of the hardest parts emotionally is knowing I will have to temporarily leave my other children at home while I live in a hospital six hours away with Eleanor. Stewart will continue working and trying to hold everything together back home while our family is split between two cities.
âIâve cried harder in the last few days than I probably have in years. Thereâs something overwhelming about trying to mentally prepare yourself to hand your tiny little girl over for a surgery this major while also trying to stay strong enough to hold your family together through it.
âOur community support has carried us farther than we ever could have imagined, and we are beyond grateful for every single person who has been along with us on Eleanorâs journey. But with this next chapter ahead of us, we know we are going to continue needing help with travel, extended hospitalization, rehabilitation, missed work, and Eleanorâs long-term medical care.
âI just wanted to update you because sharing Eleanorâs story has already made such a huge difference for our family. More than anything right now, we are asking for continued prayers for Eleanor, her surgeons, ICU team, rehab team, and our entire family as we prepare for whatâs ahead.
âAnd pray for our other children Chandler, Kamryn and Everly. As they all cope with things in their own way but they understand a lot of whatâs going on and this is hard for them also.
âThank you again for caring and sharing about our girl.
âSo much love,
âTashaâ.
Itâs hard to find words after reading Tashaâs update.
I hope and pray that while there will be long days ahead, Sweet Eleanor will eventually grow strong and live a long, happy life.
I know you feel the same.
