Charmaine De Beer
Age of parents:
Age: 8 years
Is this your only child? No, twin sister.
Diagnosis of child: Acute Spastic Diplegic Cerebral Palsy and Epilepsy
What are the biggest challenges facing your child on a daily basis?
Movement, Seizures, frustration at her challenges, the occasional uniformed individual.
What are the happiest moments you have with your child on a daily basis?
Mornings, homework, the drive home listening to her describe her day, watching her play, the incredible progress she makes daily, any moment in which Chloe is bubbly and laughing – she has an incredible sense of humour. Her singing
Are you a single parent or married? Divorced.
I left a destructive marriage with my children and was a single parent for 4 years. Single parenting is difficult, you learn to cope. You find out what it is to have your mettle tested. Love for your children will bring out the lioness in you. You do, however, have to learn to ask for help. Something I was never very good at, but I’ve learned. I’m now in a committed relationship with my partner Warren.
Has your special needs child had an effect on your marriage?
Warren and I live together, with the girls, as a family. He’s exceptionally handy and helpful, he has taken up the role of daddy with supreme gusto and ability! When I was in hospital for back surgery last year, I gained so much respect for him, he took care of everything. When you’ve done this on your own, you sometimes forget that’s there’s someone else there to help and support you. I’m so grateful and happy to have him in my life.
What has your child taught you about yourself, both positively and negatively?
I’ve realized that I’m stronger than I give myself credit for. I’ve realized that stress does not kill you. For all my concerns and complaints, I will always hold onto hope, no matter how thinly stretched I feel.
Are your family and friends supportive?
The difficulties seem to be ironing themselves out now, but we had long struggle trying to explain that Chloe is not going to “get better”. It’s not the flu. It’s Cerebral Palsy. It’s Epilepsy. Yes, she is doing incredibly and yes, she will walk on her own. Epilepsy may pass in time but CP is forever. Acceptance sometimes seems a bit hard for those who love her. We are patient. We explain. We Try. One day at time.
What has made the biggest difference to your child’s quality of life?
Stem cell treatment in Kiev, mainstreaming – her teacher is superb, her phenomenal therapists, her AFO’s, her iPad, her facilitator, her Gait Trainer and Chloe's incredible indomitable spirit.
What is your dream for your child?
To continue being a light in this world. For her to see herself as we see her. To be who she wants to be, to embrace life as it feels right to her - not what everyone else expects. To share her incredible story, so that children and parents out there, who may be close to giving up, or who have been told to give up by medical professionals, see that there is always hope. The sun always shines again, even if it is through the clouds.