A major part of our life as a family was spending time together. We tried our best to fit in time with the kids even though we had ridiculously busy schedules, which included running our own businesses and church ministry. I came up with a great idea that worked really well. ‘Girl’s Night Out’ – where RaVen and I would spend quality time together talking, watching girly movies and we slept in the same room while the boys – JB and Noel had ‘Boy’s Night Out’ doing whatever they wanted. No interruptions! Even though JB would want to know what we were doing. It was truly a perfect time for us to bond. The kids loved it and looked forward to this on a monthly basis.
When JB was diagnosed, everything considered normal in our lives turned upside down. The focus was on getting him better which required a lot of attention. Our businesses took a beating. He required 24/7 care so even though we stayed connected to God, our church attendance dwindled considerably.
JBF talks to RaVen
"My brother Jabez, was diagnosed with cancer when I was seven. It did not concern me really, because, what is cancer to a seven-year-old anyway? What was I concerned about? Playing with friends, getting toys, avoiding vegetables, capturing my parents’ attention were on the top of my list at that time.
At seven we are more than likely to be self-absorbed because we haven’t yet learnt true sympathy or empathy. Our truth is just that, our truth; warped by ignorance and a childish mind."
RaVen was always a brilliant, independent, well-behaved child. So it was easy for us to shift most if not all of the attention to JB. Her understanding, based on our hope and faith, was that JB would get better. One of the significant changes in her life was the fact that we no longer had Girl’s Night Out. At the time it did not seem important to me because we still had family time in between the turmoil of “fixing” JB. She asked about it several times but I was pre-occupied and JB wanted, demanded and needed all of our time. Our focus as far as RaVen was concerned was making sure she maintained her ‘A’ Grade at school. As her parents we used this as a measure of her “being okay.”
"One of the main challenges parents of a child with cancer faces - if they have other children - is giving each child “enough” attention even though the one with cancer undeniably requires more or a different type of attention. There were many instances over the two years of his illness when I felt that I was being ‘neglected’ by family and family friends because JB was in the spotlight."
A few weeks after JB died, a then 9 year-old RaVen, told me she needed to talk. I listened attentively. She explained that she felt like a sack of potatoes. Abandoned. Invisible. Unloved. Unwanted. She said everyone called to find out how JB was doing and that no one asked about her. She would put her head under her pillow and scream. When asked why she didn’t tell me this before, she simply said: “I knew you all were going through a lot with JB and I did not want to add to your stress.” I was very surprised. In my mind Noel and I were great parents. We never left RaVen with anyone. She travelled with us to England for JB’s major surgery. But through the eyes of a child, a sibling of a child with cancer, things look very, very different.
I was happy that she was brave enough and articulate enough to tell me how she felt. Because of this we were inspired to launch “The JBF Siblings Only Club”. This focuses on the siblings. No sick kids, no parents. It’s a chance for them to have a care-free day that caters to their emotional needs when all the attention is on them. Part of the day includes a very kid-friendly group therapy session where the siblings get to say how they feel using different methods to make it fun and easy for them.
We have a very successful track record, as parents of siblings have told us the outing made a positive difference in the lives of their children. One particular boy was struggling at school and his behavior was unexplainable. At the session, it was discovered that he blamed himself for his sister’s illness. Another child was actually trying to hurt himself so he could be admitted to hospital to get the attention of his mother who spent a lot of time at hospital with his critically ill brother. Our intervention allowed him to come to visit more often so he did not feel left out.
"With the right combination of innocence and faith in God, at no point did I think Jabez would not be healed. When he died, I went through a brief period of blaming myself for his death. I thought it was because I took God for granted and that I didn’t pray enough. Thankfully I was able to speak to my parents about my feelings and with their support I quickly removed the blame from myself.
Unfortunately, many siblings of children with cancer are not able to cope with the stress of the situation and are especially scarred by the death of their brother or sister. No doubt the events of the morning my brother died are forever etched in my mind and his funeral was especially disturbing. However, I would not say I was scarred but more sobered by this experience."
Overall, the experience of having a sibling with cancer who succumbed to his illness shaped my life significantly. I am now a second-year medical student in Cardiff University, UK. My early life made me more mature, goal-oriented and aware than others my age."
I recognize that though RaVen is a 21 year-old young adult there are still residual effects of her experiences as a little girl dealing with an overwhelming situation that changed the course of our lives that none of us could have been fully prepared for. My prayer is that with more one on one chats with her we can unearth the problems and deal with them head-on.
Bringing healing, happiness and hope to you and your family this Christmas season.
Submitted by: Chevaughn Joseph
The Just Because Foundation is a non-profit pediatric cancer support organization in Trinidad & Tobago established by Noel and Chevaughn Joseph who lost their 5-and-a-half-year-old son Jabez “JB” Joseph to Alveolar Rhabdomyosarcoma, a rare form of childhood cancer, after a two-year battle. They provide emotional, practical and social support for families of children with cancer at absolutely no cost. If you're seeking advice or words of encouragement to these courageous children, please reach out to the Just Because Foundation.
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