“Getting the confidence to seek support was hard, but worth it.”
: Mum Heather, on coping with Zoe’s sight loss.
March 11, 2015
Heather is Mum to bright and bubbly, four-year-old Zoe, who attends the RLSB Nursery. Zoe has the rare genetic condition, aniridia, meaning she does not have irises in her eyes and is registered as severely sight impaired.
Heather does not allow Zoe’s sight condition to define her; instead she devotes herself to enabling Zoe to be the happy and vibrant little girl that she is today.
Heather tells of her experiences, learning to come to terms with Zoe’s sight loss. She explained how several other mums, including her own, have helped her to accept, adapt and move forwards by supporting her every step of the way.
“I didn’t want to learn too much, too quickly and be scared off.”
“When Zoe was little I didn’t want to hear about other parents’ experiences at the time. I didn’t want to learn too much too quickly, which has happened to me in the past and scared me off a bit.”
“My Mum did a lot to begin with; she took steps to meet the mums at RLSB. She told me it was all very positive and that there was a lot of support. She sold it in a really positive light, so I felt confident to come down.”
“From there our relationship with RLSB blossomed, really. Zoe has got so much out of it.”
“I felt like a fraud for a long time because Zoe always coped very well.”
“I felt like a fraud for a long time, because Zoe always coped really well. She didn’t have all of the additional disabilities that many of the other children did.”
“I find I fall between two camps; my child isn’t completely normal, but nor is she very disabled. Where does that middle line or path go? It is a hard line to walk. I didn’t feel I could access other support networks because, to all intensive purposes, you meet Zoe and you think there is nothing wrong.”
“Part of my acceptance of her sight condition and understanding that I had a right to access support, was from coming to the RLSB nursery. The fact that we were accepted helped us adjust to it.”
“It’s been a real voyage of discovery, a voyage of support.”
“In May last year, I went to an aniridia conference and beforehand I was really worried. To take that first step was really scary. You don’t know what you are going to find out. You don’t know if you are going to get on with people. But I met some wonderful people who are role models for Zoe.”
“I met a lovely girl who is in her twenties who has the condition. She talked me through everything about it in layman’s terms, which was just what I needed.”
“At the beginning we thought it was just Zoe’s eyes, but it is just such an unknown – we are still learning, day by day, new things about Zoe’s complex condition. It’s an on-going journey.”
“It is sometimes difficult to make the effort, but the special mums are always there.”
“Having two children, lots of hospital appointments, working part time and, of course, a child that struggles to sleep means there is little time to access support. I have two hours to myself a week and no time for socialising.”
“The mums that make the effort and say, ‘We know.’ and understand are the best. They continue to come back. It is difficult to make the effort, outwards, so the mums who make the effort back in again are very special.”
“Three Mums have helped me come to terms with Zoe’s condition.”
“I would like to thank my own mum. She has provided that net of support to push me to where I needed to go and enabled Zoe to access the resources that she needs. She has given me opportunity to live my own life in the knowledge that Zoe is well supported, so that the whole thing is not just about Zoe and her disability.”
“The second Mum is my friend Emma who I have known for 20 years. She says ‘yes, life is tough – but we just have to get on with it.’ She pushed me to find other roads to support because I became quite isolated and low when finding out the complexities of Zoe’s condition.”
“The third is my boss, Lyn. All of the understanding and support she’s given me has enabled me to keep working and meet my girls’ needs and hospital appointments. She is the best.”
“My message to other mums in my situation.”
“Be brave and reach out. It is hard to make those initial steps, but it’s worth it. Zoe would not be doing as well as she is and, as a family, we would not be doing as well as we are, if it wasn’t for RLSB.”
“Whatever your child’s sight - a little or a lot of loss - you are not a fraud; you will be welcomed.”
On Mother’s Day 2015, RLSB are celebrating mums who support other mums to cope with their child’s sight loss.
Original article at RLSB, (Royal London Society for Blind people). Images (c) Alex Brenner.
