Additional Needs

Her Cerebral Palsy Diagnosis and the Long Unknown Road Ahead

Posted by Rochelle Carter on 24th June 2020 Additional Needs, Advice & Support, Disabilities

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I remember her diagnosis day well.

It arose after we raised concerns about Annabelle still not being able to sit independently at 9 months old, favouring her right hand over her left hand, doing unusual uncontrollable movements and doing things that just seemed ‘different’.

For months prior I had been telling myself that she was premature and that she needed time but there was a niggling feeling at the bottom of my stomach that I just couldn’t get rid of... Was something wrong?

We were still under the local hospital for 3 monthly reviews due to her prematurity. We went into what turned out to be our final meeting and we were forced to ask whether she had cerebral palsy.

Whilst the consultant didn’t say yes, he didn’t say no either but confirmed he would refer us to a child development centre where within 2 minutes of the doctor looking at Annabelle she was able to confirm she did have cerebral palsy affecting all four of her limbs and advised that it was ‘quite bad’. We were told she would need physiotherapy and an MRI but other than that we were not given any indication of what to expect for her future and her mobility.

The next few months following diagnosis were very hard.

Once we had processed Annabelle’s diagnosis as well as we could at the time, we had to start telling family and friends and explaining Annabelle’s difficulties and her differences. The hardest part was trying to explain something we ourselves didn’t really understand and people asking questions that we were unable to answer as we simply just didn’t know the answers.

Not because we hadn’t tried to educate ourselves but because no one child with cerebral palsy is affected the same so predicting her future was and still is simply impossible.

Two and a half years after diagnosis, here we are. We are no longer scared of cerebral palsy. We are embracing life as it is. We still are at the beginning of the long unknown road ahead which is full of bumps and hurdles.

Yes, some days are hard, but the cerebral palsy is an integral part of who Annabelle is and it will always be part of her. Yes she will live life ‘differently’, yes she will have to work harder than most to achieve things that just come naturally to others and yes there will be certain things she simply will not be able to do but we will not let her cerebral palsy diagnosis define her... She is MORE than the disability she has to embrace!