Age of parent:
Age: 2 years and nine months old
Is this your only child?
Diagnosis of child:
Due to oxygen deficiency at birth, my daughter experienced a brain haemorrhage which resulted in a diagnoses of cerebral palsy
What are the biggest challenges facing your child on a daily basis?
Nombuso’s development is significantly delayed and chances are that there are milestones that she may never reach. She is nearly 3 years old and cant sit for long, she is not walking nor is she talking. As a result of her cerebral palsy she also experiences seizures whose frequency and intensity differs from time to time which sometimes leads to hospital admissions, when we are not able to control them at home. She also has increased muscle tone in her legs and receives Botox injections every 4 months to try to relax her muscles. We hope this will aid Nombuso with movement and assist her in sitting correctly. Her day is also made up of lots of stretching and standing in a standing frame. She also has a low immune system and catches infections easily which has seen me needing to admit her into hospital for various bacterial and viral infections but my Nombuso is a fighter of note. Despite all of this, her personality still comes through and she finds a way of communicating when she is unhappy, happy, hungry or when she just wants a little more love than usual.
What are the happiest moments you have with your child on a daily basis?
My daughter is generous with her smile and laughter. She is always ready and willing to give a hug and a kiss. I put her to sleep by getting in bed with her and let her sleep on my chest and these moments I treasure.
Are you married?
Has your special needs child had an effect on your marriage?
Not applicable, as we were never married.
Are your family and friends supportive?
Yes they are, my family don’t live close to us but they do check in on us from time to time and that counts. I have a lovely close-knit circle of friends and they truly are the pillars I lean on when I feel a little shaky. Their prayers and thoughts keep me rooted.
What has your child taught you about yourself, both positively and negatively?
My child has taught me that I have more love to give than I ever thought. Her existence has shown me God’s grace and mercy and has certainly humbled me. While I have never thought I could do it all on my own, my child has reminded me that every “little bit” of help counts. She has taught me to be patient – not so much with her but with life.
Do you take time out, if so what do you do to relax?
As a single parent, I do not have the luxury of taking time out as I have a full time job and then come home to take care of Nombuso. I usually use most of my time off work to be with Nombuso. From time to time I do go to a spa for a facial or a massage. And whenever I find the opportunity to, I sleep in a little longer. I visit my friends for some good food and laughter and that always does the trick for me.
What has made the biggest difference to your child’s quality of life?
I am very grateful for the fact that I work and that I am able to provide for my daughter, that I am able to meet her medical needs as well as provide her with a comfortable home, this may seem like a basic need to many but for me it is a privilege, I will never take for granted. My daughter’s quality of life would have been negatively impacted had I not had a medical aid or been able to provide the right diet for her or to take her for regular physiotherapy sessions. I wouldn’t have been able to offer her the best assistive devices to help facilitate her growth and development. Technology and access to information has also kept me informed and educated. However, these are just material things, LOVE has made the BIGGEST difference to her life.
What is your dream for your child?
I wish for my daughter to walk and talk or at the very least to be a little more independent than she is now. I dream that I may live (and gainfully so) long enough to also be around to take care of her and help her. I dream for my daughter to live a pain-free life, one that is filled with joy and happiness despite her physical challenges. Lastly, I pray to God to continue to provide us with the health and means of income for my daughter to have a warm home to live in. Essentially, I hope my daughter never finds herself in a position of desitution or desperate need.