No diagnosis means travelling a road with no destination….
Following a pretty uneventful pregnancy, Megan Rose was born into this world in July 2010. She was gorgeous, healthy, funny and everything I had hoped for. However, within a couple of months, I knew that she was ‘different’ – she often seemed restless and in discomfort after feeding and she wasn’t tracking objects.
We would go to baby groups, yoga, rhyme time etc, and most weeks I would leave the class early with a very distressed baby and in tears myself. Why wasn’t she enjoying her new life? Was it something I was doing wrong? I tore myself apart wondering why my little girl was so upset and, over time, why she wasn’t doing any of the things the other babies were doing. Everyone told me not to worry and that she would calm down and catch up when we got her feeding issues sorted but, eventually, I followed my natural instincts and took her to see the GP who referred us to a paediatrician. At that moment we started a process which will probably never stop – a long, winding road with a vast empire of NHS and local authority services to stop off at on the way. It’s like a journey without a destination, with no road signs telling you where you are or how many miles you have left to go – an endless, sometimes terrifying feeling of being lost.
By the time Megan was 6 months old she was diagnosed as being completely blind. We had hoped that that was it, just blind, she would still be able to lead a reasonably normal life, go to a mainstream school, achieve things, get married, have children…. wouldn’t she? By 2 years, with very little development to speak of, we knew this hope for a ‘reasonably normal life’ was fading. An MRI scan showed that the cerebellum in her brain was getting smaller but the neurologists had and continue to have no idea what this will mean for her. By 3 and a half she is still unable to sit independently, walk, talk, see, hold things, feed herself, dance, splash in puddles, sing, play unassisted or have any kind of independence. Despite undergoing more scans, a muscle biopsy, lumbar punctures, blood and urine analysis, genome testing and hormone tests there is very little development to speak of and we are no nearer understanding why.
We now see consultants in paediatrics, neurology, opthalmology, metabolics; as well as speech therapists, physiotherapists, occupational therapists, a specialist teacher for the visually impaired and now a team of people at Park Lane school. It can be exhausting and difficult to fit everything in whilst also working 4 days a week – thank God for our amazing childminder!
We’re still on the endless journey but, instead of the early days when the view from the window was grey and bleak, we now have prolonged spells of sunshine. Thanks to wise and kind people we have met along the way, Cheshire East Parent Carer Forum, Little Stars Macclesfield, friends and family, counselling and a new-found inner strength we have learned to accept Megan for who is she and what she can do. She is amazing and her smiles, cuddles and cheeky giggle all light up my world every day. Perhaps one day we will have a diagnosis for her but it’s become less important, and reducing the focus on worrying about the diagnosis has freed up more time and mental space to just enjoy having her in our lives.