Meet Selam, she is mum to five-year-old Isaac. Despite his age, Isaac has already faced huge challenges battling Retinoblastoma, a type of eye cancer. He makes his mum proud every day.
Selam and Isaac joined RLSB at our parent and toddler group in Southwark for blind and partially sighted toddlers.
I met with Selam to talk about her experiences as a mum through this difficult period in her family’s life, and hear how it was through meeting another mum, that she started to have hope for Isaac’s future.
‘To keep him safe we had to live in isolation’
“When my son was diagnosed with cancer of the eyes, he needed chemotherapy. His immune system was compromised and we were unable to go out, socialise or have friends over or attend anything.”
“We were living like hermits, we were housebound. That made everything worse, we were isolated. I felt lonely. It still feels lonely.”
The constant battle for support and access to services for Isaac has been an uphill struggle.
“When you are trying to access services for your child, you speak to so many people. No matter how many times, you have to tell your story over and over again to strangers. Strangers, who may or may not understand your pain, what you have been through and what it means to you.”
Thank you Christina for giving me hope when I feared losing Isaac
It was upon being introduced to Christina, another mum whose son has the same condition as Isaac, that Selam’s family started to believe that they might cope. Christina became a friend, a support and a ray of hope:
“When my son was diagnosed, it was late; the tumours were well advanced in his eyes, so it was a great battle.”
“Me and my husband were going through that difficult time. We didn’t know what to expect. It was a lot of information at the same time. We felt that we wouldn’t cope.”
“Christina was going through the same thing but about six months earlier than us. She was kind enough to share her challenges, best practices, hopes and despairs with us.”
Selam went on to explain how Christina helped her through her darkest moments with Isaac:
“My son had one cycle of chemotherapy and he was so so sick. We needed some reassurance. He wasn’t eating, he was standing at first, then he was completely sick – he couldn’t stand or even hold up his head.”
“He was so weak; they are so poisonous the drugs. We called her and told her what was happening. She explained to me her journey as kindly as possible. What happened to her son was just the same, and he is doing well now.”
“I was hopeful then, because I thought for a while Isaac might not even make it because he was so sick.”
“We were able to cope better, we could see her son and see that you can go through this and still be a little boy. It was fantastic to have her. I am grateful that she was able to provide such a support when I needed it most.”
My advice to other mums: use any chance to connect with other families
“I want to say to mums who face these kinds of challenges; look out for support. Try not to be isolated, talk to other parents who have been through it. Use any chance to connect with other families. It helps.”
“You meet parents who have been there, and they tell you that their kids have grown up and achieved what they wanted to do.”
“You are not the only one, there are people out there facing the same thing. There is a light on the other side.”
Update: In January 2017, RSBC merged with the Royal London Society for Blind People (RLSB). Although we are now called RSBC, there may be some references to RLSB in this blog.
Get in touch with RLSB’s Family Support Service
If you feel lonely and need support, or know someone who does, get in touch with our Family Support Service. Call 020 3198 0225, or email firstname.lastname@example.org
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