036: The Realities of Families With Special Needs Children – W/ The Family
I come from a family of 6, and you must have seen and heard from 4 of my family members – mom, dad, my older sister Leslie and younger brother Musaga. However, many of you have never heard about my other brother Bayong, who is the youngest sibling.
Bayong was born just like any of us but had a seizure disorder, which changed the trajectory of his life, as well as the rest of our lives. Today, we sit down for the first time to share his story and also open up about our experience growing up with him and how that has impacted our lives. This is definitely a vulnerable moment like never before. If you think you knew me, well, you will get to really know me through this conversation. Heck, I also got to learn a lot about my family like never before.
For the first time on this platform, I was the host and guest at the same time. It felt great to bare my emotions all out with my family and I hope that our story doesn’t only inspire families going through a similar experience, but encourages us all to be sensitive to what these families with special needs children are going through. In honor of National Epilepsy Awareness Month, here is to Bayong and every other special needs child who has been impacted by epilepsy! We love you!
Things you will learn in this episode:
[00:01 – 04:42] Introduction
- Introducing the guest and sharing a brief background on the topic.
[04:42 – 24:32] Mom & Dad shares the story of how it all began
- The troubling pregnancy
- Childbirth and issues afterward
- Pressure to look for a cure
- Finding hope and faith in God
- Going through depression
- Finding support and peace
[24:32 – 36:40] Sharing Our Experiences as Siblings
- Anyoh shares her experience
- Leslie shares her experience
- Musaga shares her experience
[36:40 – 50:30] Dealing with Societal Pressure & Questions
- People advised that we abandon our child
- Dealing with the social pressure and family
- Mum shared an emotional story of a childhood talk between Bayong & Musaga
- The support system that positively impacted the situation
[50:30 – 1:02:31] Our Fears & Hope
- Anyoh shares her fears and worries
- Leslie talks about keeping hope when Bayong is going through his episodes
- Musaga shares his fears, hope, and gratitude
- Mum & Dad share their fears, finding inspiration and giving back to others
[1:01:31] – 1:07:44] Lessons Learnt & Final Discussions
- We shared lessons we learned from having Bayong
- Mum and Dad shares words of wisdom for young families
- Anyoh urges society to be kind and supportive
- Last words and final thoughts from Anyoh
“One of the [traditional] doctors told us that he was a snake and that if we are tough enough, just gather all his things and go and keep him by the riverside and I am going to transform him back into the snake so that he can go. At that point, we made that decision that we have had enough!” – Dr. Grace Fombad
“Growing up and to this day, with [Bayong] being my only brother, I always felt that void. There was always that hope that one day he will even be able to say a word back, or play with me or just me wondering what life would have been like if things were different for his health.” – Musaga Fombad
“A lot of times as I have grown up, there is also that feeling of guilt because that could have been me. I feel like I get to experience all of these things that he never got the opportunity to. It is tough just thinking about it and being helpless.” – Musaga Fombad
“Sometimes you can’t help but feel that he is just suffering too much and you mostly just pray but it has just been difficult and a bit rocky. One minute you think he is fine, and the next minute he is back to a stage where you really don’t know what is going to happen to him.” – Dr. Leslie Fombad
“[Bayong’s story] changed our lives completely and we are better people as we can adjust to any condition in life. Most people will not accept that type of condition but we did and we are still going on strong, and we will encourage other families to emulate our example.” – Dr. Rudolf Fombad
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