My son Ezra was diagnosed with severe Haemophilia A just a few days after birth, when he was circumcised and the wound bled for several days. I was a first time mom, and dealing with the normal challenges plus the unknown implications of a special needs baby, I was in severe shock for quite a while. Doctors and nurses at Charlotte Maxeke were so helpful and supportive, but I felt completely lost in a sea of information – those first few months are a haze of tears to me.
Getting in touch with other moms and haemophilia patients on our Facebook Support Group opened a world of hope to me. I started getting involved with the South African Haemophilia Foundation, and as such I was invited to a recent Parents Empower Parents workshop held for nurses and mothers in Kempton Park. The course is designed to promote effective parenting skills to parents of children with bleeding disorders, and to educate and support parents through classroom discussions and exercises.
The PEP program was designed to address this need by affirming positive parent/child behaviours while focusing on the unique problems faced by parents of children with bleeding disorders.
Going over the facts of haemophilia, genetic information etc was a huge help, as what I initially learn about Haemophilia had gone into the one ear and out the other, as I was emotionally not able to process all this information. But for me the highlight of the course was definitely interaction with other moms, and also with the nurses who flew from all over the country to learn more about how to be better providers to patients with haemophilia, and their parents. The dedication and commitment of these women was almost tangible, and such an inspiration to me. The nurses could also relate to the course material on a personal level, as most of them were parents themselves, and the positive parenting tips learnt by them could also be applied in their own homes.
This is a course I feel ALL parents should do – whether your child is completely healthy, or has something like a bleeding disorder which means his/her development needs to be watched closely. Having a child with a bleeding disorder impacts the entire family on so many levels. Topics addressed in-depth included raising a child with a healthy self esteem, different parenting styles, compassionate discipline, and parent/ family communication.
When I came home after the first day I sat down my almost-three year-old and explained the 3 golden rules to him.
- Do not harm anyone else
- Do not harm yourself
- Do not harm the environment
His first question was about what the environment is, and after that was explained, he can now tell me if he has broken one of these rules. Not something I thought a 3 year old would be able to comprehend – it just shows you how we underestimate our children and what they are capable of.
It was very helpful from a parenting perspective to learn of techniques to raise a balanced child with a healthy self-esteem. On top of that, it was fantastic to discuss key issues like raising a child who is thought of as more fragile than other children. After attending this course I feel equipped to help my son grow up as a normal little boy with increased confidence, understanding and knowledge.
Thank you so much for this opportunity – the manual is so useful as I can refer to it time and time again. Definitely a course that has impacted my life and my son’s – for the better!
To find out more about the next course in your area you can e-mail email@example.com. I would urge all parents to get involved in some way. Join our Facebook support group, follow the South African Haemophilia Foundation on Twitter or write about your story in one of our newsletters. Sharing is caring, and motivation and support from others is vital if you or a loved one has a bleeding disorder.