What 25 years of caring for my disabled son has taught me

PHOTO: Supplied to YOU
PHOTO: Supplied to YOU

Crispian's eldest son was initially given just 16 years to live -- now he's 25. The Cape Town teacher shares the incredible lessons she has learnt over the years of caring for her disabled son, Dominique.

"When Dominique came into the world at 1pm on 7 December 1990, he had to be rushed to ICU immediately. I can still clearly hearing the gynaecologist saying, 'I am so sorry, next time I will do a c-section.'

Dominique suffered brain damage due to his difficult birth. He was diagnosed with cerebral palsy with a right hemiplegia.

There was no self-help book or guide that we could refer to for help when raising our beloved boy. The last 25 years of life with Dominique has been an incredible journey. Here are some of the lessons I’ve learnt along the way.

It's about the little things. Small things means so much to my son -- the smile on his face when we take our weekly drive to the beach is wonderful.

Family will see you through. The love his little brother (15) has for him is incredible. When he was younger we would go shopping and he would sit on Dominique's lap in the wheelchair. He'll defend his big brother no matter what. A few years ago at one of these resorts when the boys where in the pool, people couldn't stop staring at Dominique. My youngest son looked right back at the people staring at his brother and said, “Why are you staring at my brother? Don’t stare at him!" They turned away, and had the grace to look embarrassed. My son was just eight at the time.

Money cannot replace a parent. My marriage ended in divorce after 17 years. Getting maintenance will help, but it cannot replace the love, the bond between parent and child. Dominique needs his dad, to hear his dad's voice. It calms him.

Sometimes it's okay to have a good cry. You'll be so relieved afterwards.

People don’t deal with disability the same way. Be tolerant of those who do not understand it.

Just do the best you can. All you can do is treat them the way you want to be treated and include them in what you are doing. Do not hide them from the world. We were given them to protect them just for a short while. Dominique was only given 16 years to live. But I am still determined to look after him.

Be grateful for what you do have. We may not have a lot of material things, or a home of our own. But we are privileged in that we have an excellent support system, including Dominique's caregiver. Yes, we have medical bills. But I am privileged to have a job -- even though no one gets into teaching for the money!

Taking care of my son is a 24-hour job. When I come home from school, my second job starts. But it is so worth it. Just the smile on his face is thank you enough.

I am exactly where I am supposed to be."

This story was submitted to YOU by one of our readers and has been minimally edited.

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