A video showing two sisters choosing to wake their disabled brother up with kisses reveals the unbreakable bond between siblings despite being unable to communicate verbally.
Ezekiel, aged 4, has a rare brain condition called lissencephaly which causes multiple disabilities both mental and physical and also has seizures, poor vision and is deaf in one ear.
He is cared for at home by mom Trinity, but his sisters Brooklyn, aged 7, and Liora, 3, also love to help look after him and play with him whenever and however they can.
When Trinity asked them to wake Ezekiel, they planted gentle kisses on his cheeks and she even found Brooklyn practicing her dance recital in front of her brother.
And although he is not aware of many things, Trinity is sure he’s aware of their love for him as he reacts with a smile when they interact.
She said: “His sisters are very, very gentle with him. They kiss him on the cheek, hold his hands and hug him good night – we teach them his way of communication.
“He’s not aware of too many things but is aware of their love towards him and often smiles when we kiss him, place a warm blanket over him or rub his hair.
“Sometimes it is difficult to wake Ezekiel up, especially during times of increases of seizure medicines. We asked his sisters to wake him up and they did, with kisses.
“We don’t know how long he will live. When we read online, the average length of lifespan is only 10 years old. A specialist told us the oldest child lived to be only 18.
“Though this pains our hearts, we value each day with Ezekiel and want to honor and share about his life. We love him very deeply and he’s been truly our greatest educator thus far.”
Trinity, who is hoping to raise money for vital equipment to help with Ezekiel’s care through GoFundMe (https://www.gofundme.com/ezekiels-equipment), quit her job as a post-surgical nurse and then nurse educator after 15 years to care for her son.
She added: “Ezekiel is extremely disabled both mentally and physically. He’s a big boy and needs to be cared for from bathing, dressing, brushing teeth, diapering to standing in a stander for ‘exercise’, lifting back and forth from bed to chair to wheelchair etc.
“He’s also prone to more infections and has been hospitalized multiple times.
“After seeing multiple specialists, his treatment at home is more intense from respiratory therapy to tube feeds. All this seems to keep him somewhat healthier and less prone to hospital visits.
“It’s amazing for us to see other special needs parents “become” the nurses for their children. Ezekiel also attends a very specialized Transitional kindergarten program where he has a one to one nurse and aides and caring special education teacher.
“Insurance only allows for one wheelchair. He uses this wheelchair for school and is transported back and forth via school bus but we cannot afford a wheelchair compatible van.
“Therefore, in order to stroll him around, we need to use an adaptive stroller. Our son is getting taller and his feet reach beyond the endpoint of his current adaptive stroller.
“Because of our son, we see people very differently. We notice other handicap people more, homeless people more, or just the ones in need in our society.
“In a sense, Ezekiel, being someone who is helpless, he’s given us hope that there is true innocence and we’ve grown to have more compassionate hearts.”
Story courtesy of T&T Creative Media.