There is rest in death. She looked at me and said, “All I want is rest. And even in death, there is rest.
She takes a deep breath and adds, “my main worry is what will happen to this boy when I die”. Charity is a single mother of a 15-year-old son who is severely autistic. His name is Luke. He is also hypoactive. He is interest is not piqued by anything. Even if you put toys in his way, he is not going to notice them.
Nowadays, children are fascinated by phones and the games that they can play. You cannot even put your phone within their reach because they are always looking forward to laying their hands on it. Luke however, does not even notice that phone. He lives in his own world. As long as he is fed and his diaper is changed, he can sit in one spot for hours.
His mother’s fears are valid. You see, Charity suffers from several auto immune conditions including Lupus and APS. The latter refers to Antiphospholipid antibody syndrome . The body produces blood clots that lodges in veins and arteries. This results to a lot of complications among them, stroke.
Charity is suffering from a stroke that has paralysed her right side. APS has caused her to have Deep Vein Thrombosis. She is currently in palliative care and another clot will surely cost her life. The doctors have confirmed that she cannot survive another clot.
Catching up on the last few weeks
On this day when we were having the discussion about death, I had come to check on them. I wanted to know how they are doing. The last time I had seen her, was the time we were shooting the video below.
I found her in a bad state. I could barely hear her when she spoke. She is currently nursing wounds. The wounds are in her legs, her throat and hence the difficulties in speaking. When she lies down, they stick on her clothes and there is no other way of unsticking the clothe apart from gently pulling it off the wound.
As we were catching up, Luke came, hugged his mother and lay on her. We are talking about a well-built teenager who is about 5”7’. I hold my head as I watch Charity wince in pain. Luke’s weight has burst some of the wounds in her thighs. When Luke is done hugging his other, he rolls from her laps to the carpet. I painfully watch Charity wince again.
She loves holding her son but her current situation is holding her back. I try talking to her about raising money to access care and she is reluctant. She doesn’t want to stay away from her son. So I ask her opinion about homebased care and she is reluctant. She apologises for being stubborn.
She still loves being independent despite her condition...
Charity doesn’t like that she is not able to work and fend for her son. She doesn’t like the fact that like her son, she has to rely on a caregiver, use diapers and be stuck to her bed. As if this is not enough, she has to rely on other people for money to pay her rent, food and more.
She also has to worry about signing her son up in an orphanage or look for a guardian to take care of her son when she dies. Her son is always her priority. She hopes to get a solution.
She is tired. My heart broke when she told me that even in death, there is rest. I wish I could do more for her. I wish I could afford to consistently take care of one bill for her. However, sharing her story is good enough.
If you are out there and would love help her, send me an email on firstname.lastname@example.org.
We will chart a way forward.