Special Needs mum Mdm Quek felt dread overwhelm her as she carried her youngest boy into the operating theatre. She asked herself what she’d done to her son.
All three of her children have special needs‘. The eldest and youngest boys have a rare immune deficiency that disrupts their ability to fight infection. This special needs mum’s middle child is borderline autistic.
Mdm Quek’s Journey
Mdm Quek can’t shake the feeling that she has cursed her son. That said, she feels fortunate because she managed to give birth to him at a late age.
Her son, Lucas, reacted adversely to his rubella vaccine. The infection invaded his bone. In the course of treating him, doctors discovered that he had XLA, a rare genetic disorder. He needed intravenous immunoglobin therapy to battle infections like the flu. This Special Needs Mum’s plans to enrich her children came to a standstill.
Mdm Quek started to search for solutions after Lucas began his treatment. One of these was a stem cell transplant, but she didn’t want to place the tremendous burden of a stem cell match on her son, Jonas.
The Queks decided against the transplant and accepted lifelong treatment for Lucas. They conceived another son, Titus, but he had the same condition as his eldest brother.
Both boys are receiving the same treatment, which has side effects such as eczema and hyperactivity. The boys are so active that they can’t control themselves. Lucas poses a particular challenge because he is dyslexic.
These conditions affect his focus at school. If he cannot answer a question, he would bite his hand because of the stress. Mdm Quek is in constant touch with his teachers about his triggers. The mum herself feels frustrated because Lucas is always too distracted.
Then, there is a feeling of helplessness. Mdm Quek feels guilty that she cannot be the mum she needs to be. She started to resent herself.
Besides professional help, Mdm Quek has a few pillars of support: Her faith, her church community and other mothers who have children with rare disorders, such as those she met in the Rare Disorders Society (Singapore).
It’s not all stress for Mdm Quek, however. She has a few pillars of support. Her faith, church community, and other mums from the Rare Disorders Society give her strength. She would become depressed if not for them.
Making A Commitment
Looking after children with special needs has drained both her and her Husband, Mr. Teo, an engineer by training. They have little time to spend together, and he cannot always be there for her when things happen.
The Family Commitment
Still, the love for her children and her commitment to them are her life force. She knows that she has committed to them and that she cannot and will not forsake this life.