No mother should have to make the decision Lavenia was faced with last fall: Remove the ventilator that was keeping little Karter alive? Send him to an institution where he could receive 24-hour care? Or, find a way to care for him at home?
“I choose to keep him,” Lavenia said. People often ask her why and how she does it. She’s a single mom with a 10-year-old daughter. “It’s the love I have for him. I dedicated myself to being there for him with hopes God will continue to send me my blessings.”
Struggling to Breathe
Karter, who is 19 months old, was born with multiple congenital anomalies. In the first week of his life he had surgery to repair obstructive sleep apnea, caused from his jaw bone not developing properly. Doctors explained his struggle to breathe was like trying to get air through a coffee filter. That surgery led to the discovery that Karter’s windpipe wasn’t functioning correctly. He had to have a tracheotomy, and he suffered from multiple other health issues that kept him in neonatal intensive care at Riley Hospital for Children for six months. Lavenia was there every day praying doctors could help her tiny son and learning how to care for him, so that when she took him home on Aug. 2, 2017, she knew how to monitor his oxygen levels, clean his trach and everything else involved in caring for her baby.
Then the unexpected happened again. Karter went into cardiac arrest.
“Even with all the training I got, it still didn’t prepare me for seeing my son turn blue,” she said.
He was rushed to Riley by ambulance, but he suffered brain damage from the loss of oxygen.
“We didn’t think Karter could get any better, and most parents take the vent away and let their baby die,” Lavenia said. She wasn’t ready to give up. “I didn’t really know the love you could have for a human being.”
Finding Support When Caring for a Child with a Disability
That love motivated her to be his advocate from the moment he was born. She researched, asked questions and studied how nurses cared for her son and other babies in the NICU. She prayed. When it was time for Karter to go home, a hospital social worker connected Lavenia with CICOA.
“I asked what CICOA was–I thought it was just for the elderly,” she said. Lavenia learned that CICOA does so much more.
CICOA arranged for part-time nursing care, so Lavenia can get a break and also care for her 10-year-old daughter.
“My daughter was my only child for nine years, and it’s hard for her to share me, let alone share me with a sick child,” Lavenia said.
She never imagined this path for herself, but she’s grateful Riley was able to connect her to resources and organizations like CICOA to help when her life was turned upside down.
“I’m a college graduate. I had a nice job. I was working for an insurance company and taking care of my daughter and living our lives,” she said. “Then I get pregnant and my life changed forever. I had to move in with my mom. Five people in a two-bedroom home…I had to quit my job to be a caretaker for my son.”
Having the Strength to Care for Her Son
She’s learned so much more than how to care for a baby with a tracheotomy, whose oxygen levels can plummet without any warning, who has a machine that helps him breathe. She’s learned patience and how to accept help.
“People say to me, you are so strong. I don’t know how you do it,” she said. “I just love him, maybe even more because he was born with all these congenital abnormalities. God could have taken him away, but I feel like he left him here for me to take care of him.”
If you or someone you know is taking care of a child with a disability, contact the CICOA Aging & Disability Resource Center to speak to an options counselor and get help.