Mom finds strength, joy in “inch-stones” of son who lives with a disability
- EFN Staff | March 19, 2018
Parenting a child with a severe disability has given this mother incredible strength to provide the support and care her son needs. Allyssa, who asked that her last name not to be identified, is the voice, hands and legs to her 6-year-old son, Ben. Allyssa, who lives in Prince Albert, spends all of her time caring for her son.
“I learned to do what’s best for him. I was absolutely riddled with anxiety going into an emergency room or to a doctor’s appointment,” said Allyssa. “I was judged and stigmatized as a young single mother who doesn’t know what she’s talking about or what she’s doing.”
It all started when Ben had infantile spasms (IS) which is an infancy epilepsy that caused his body to jerk in motions and is accompanied by development delays. Physical seizures were only seen when he was 8-months-old but the doctors always told Allyssa not to worry about it. When Ben reached a year old, it was then that doctors pushed forward more testing.
Ben has a condition called Lennox-Gastaut syndrome, which is a form of severe epilepsy that begins in childhood. Symptoms of this condition usually results in the child having multiple types of seizures and their intellectual disability is impaired.
Ben is susceptible to infections and every type of seizure there is which makes it very hard to treat. The diagnosis was made when doctors noticed a slow spike wave pattern in an electroencephalography (EEG). Ben also has electrical status epilepticus in sleep (ESES). When Ben sleeps, it looks as if he is in a continuous seizure. This caused his development to be restricted placing him on a level of a 9-month-old infant. Due to the epilepsy, Ben has low muscle tone and is unable to walk, talk and struggles with swallowing so he is tube-fed.
This past summer, Allyssa nearly lost Ben after he contracted a Methicillin-resistant Staphylococcus aureus (MRSA) infection that got him so sick, he ended up in septic shock.
“His body started failing him…both of his lungs had collapsed. It was scary,” she said. “All the people who helped him in Prince Albert didn’t think he would pull through. But he did.”
It’s a lot for Allyssa to take on but she found help by seeing a psychologist and having a strong support system. She has learned to cherish every single day with him and she always makes sure to love and spoil him as much as possible. Allyssa focuses on the little things that she calls inch-stones rather than milestones like when Ben laughs at certain scenes in movies. She sees how precious Ben’s life is and continues to be his advocate by holding onto him with strength and love while wearing her supermom cape.
“I don’t want to lose him until we’re both really old and have lived really long lives. Unfortunately, I don’t know how realistic that is for his conditions,” said Allyssa. “It’s taking me a lot of years...to hold my head up strong and to know that I am Ben’s mom and I’m doing the best I can for him.”