{"id":12728,"date":"2022-08-31T10:32:00","date_gmt":"2022-08-31T09:32:00","guid":{"rendered":"https:\/\/www.sense.org.uk\/?p=12728"},"modified":"2024-07-29T09:38:18","modified_gmt":"2024-07-29T08:38:18","slug":"our-world-was-closing-in-now-its-more-special-than-ever","status":"publish","type":"post","link":"https:\/\/www.sense.org.uk\/blog\/our-world-was-closing-in-now-its-more-special-than-ever\/","title":{"rendered":"Our world was closing in, now it’s more special than ever"},"content":{"rendered":"\n

Remi has been supported by Sense since she was a few months old, when she was diagnosed with several eye conditions. She\u2019s five now, and every year her future looks brighter! We speak to mum, Sukhi, to learn more about Remi\u2019s story.\u00a0<\/p>\n\n\n\n

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Here’s Remi now, at five years old. Looking pretty in pink!<\/figcaption><\/figure>\n\n\n\n

If you were to meet Remi, you\u2019d see a regular kid with a beautiful smile, big curly hair, and shiny pink glasses. She is so joyous and fun to be around. But Remi has these amazing \u2018special eyes\u2019 that make her different from regular kids.<\/p>\n\n\n\n

When she was born, I was so happy. I had this gorgeous little baby. However, I realised quite early on that something wasn\u2019t quite right. She wasn\u2019t making eye contact with me, not even during feeding. At the time, I honestly believed she was upset with me. I didn\u2019t know how to make things better.<\/p>\n\n\n\n

I started relying on Dr Google which resulted in sleepless nights and a lot of upset. When babies are really young, their eyes are still developing, so I convinced myself that she just had delayed vision.<\/p>\n\n\n\n

Staying positive through the diagnosis  <\/h2>\n\n\n\n

I quickly raised the alarm bells to a health visitor who suggested Remi may have nystagmus<\/a>. This would cause rapid involuntary eye movements, affecting her focus and vision. It was really hard news to hear. She was eight weeks old when she got her official diagnosis.<\/p>\n\n\n\n

The wait for her appointment was agonising. It turned out that as well as Nystagmus, Remi also had a rare eye condition, aniridia<\/a>, where the iris (the coloured part of her eye) is missing, and cataracts<\/a> in both her eyes.<\/p>\n\n\n\n

All this means that Remi has a lower level of vision and it\u2019s hard for her to adjust to bright or changing light levels. It also causes other parts of her eyes to be under-developed.<\/p>\n\n\n\n

The ophthalmologist who spoke to me and my husband Marcus, was positive about Remi\u2019s conditions. We left thinking that we should be feeling positive too, but inside, it felt like the world was closing in on me. I didn\u2019t know how life would be and just wanted to protect my baby. <\/p>\n\n\n\n

Now I can look back and see how important that time was. It was a massive learning curve. I also found Sense during that time, and Sense are a part of Remi\u2019s childhood and an important part of her beautiful story.<\/p>\n\n\n\n

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Here is Sukhi with her two girls, Remi is in the middle next to mum.<\/figcaption><\/figure>\n\n\n\n

Finding a home in Sense<\/h2>\n\n\n\n

I first heard about Sense when Remi was still just a few months old. I visited a Sense centre and they told me about the Sensory Explorers sessions run by a lady called Anne. So, I took Remi to the centre to find out more.<\/p>\n\n\n\n

I felt a sense of belonging straight away. Anne who is such a wonderful lady introduced me to other parents who just \u2018got it.\u2019 It gave me perspective and reassurance.<\/p>\n\n\n\n

For the children, the Sensory Explorer sessions are both action packed and calming. They enable children with complex needs to have fun, just like other children. This is so important.<\/p>\n\n\n\n

I was able to take my other daughter too. Both sisters have great memories from that time \u2013 especially the messy play! The centre itself was an open and friendly space for us to just be, at a time when I was going through a scary part of my life. It\u2019s lovely we had that, and that we still do.<\/p>\n\n\n\n

Our relationship with Sense has helped Remi do new things, explore, create friendships, and grow in confidence. We\u2019re so grateful for it. I want my little one to have the courage to advocate for herself because she will have additional challenges to overcome.<\/p>\n\n\n\n

I also want Remi to always be proud of her differences and how she sees the world in her own unique way. I heard from one teacher that Remi wants to be a unicorn, \u201cbecause it\u2019s good to be different.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"

With the help of Sense, Remi has overcome so many challenges. We speak to mum, Sukhi, to learn more about Remi\u2019s story.\u00a0<\/p>\n","protected":false},"author":26,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_searchwp_excluded":"","footnotes":""},"categories":[7],"tags":[],"display_author":[304],"class_list":["post-12728","post","type-post","status-publish","format-standard","hentry","category-blog","display_author-sukhi"],"acf":[],"_links":{"self":[{"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/posts\/12728","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/users\/26"}],"replies":[{"embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/comments?post=12728"}],"version-history":[{"count":0,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/posts\/12728\/revisions"}],"wp:attachment":[{"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/media?parent=12728"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/categories?post=12728"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/tags?post=12728"},{"taxonomy":"display_author","embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/display_author?post=12728"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}