I wish someone had told me... - Jeans for Genes

I wish someone had told me…

Writer and Campaigner, Stephanie Nimmo recently penned a heartfelt memoir “Was this in the Plan?” about caring for her young daughter Daisy who was diagnosed with a rare genetic condition, Costello syndrome. Sadly, Daisy passed away in January 2017 at the age of twelve.

Here, Stephanie shares her first-hand experience and writes a guide for mothers who are newly embarking on the complex needs journey with their recently-diagnosed children.

While having a quick tea break in the parents’ kitchen today I got talking to the mum from the next door cubicle, recently arrived with a newborn baby.  As we chatted I realised that I could have been talking to the person I was nearly 7 years ago when I arrived at this hospital with a tiny baby and a whole load of question marks and worries about how her life would pan out, she too has 3 other children, similar ages to my children when Daisy was born and as we talked and she shared her thoughts I realised I was telling her all the things I wish someone had told me all those years ago.

So for the benefit of anyone else embarking on this journey of hospitals, disability and caring here are the things I want you to know.

  • Allow yourself to grieve – mourn the child you thought you would have, adjust to the child you now have and find a love for that child that you never thought possible.
  • Worry about the future if you must but learn to go with the flow and live for the moment, as time goes on you will stop fighting the things you can’t change and only focus on the things you can influence, you will find that you can live in the moment and gain perspective.
  • Don’t be afraid to accept help or ask for help. That was the hardest thing we had to do, we saw it as an admission of failure that we could not look after our own child. It is not.
  • Remember that you are your child’s mother – when your child has complex medical needs and you spend so much time in hospital you become medicalised and institutionalised and bogged down in numbers, values, rates, ranges, results – monitor these things if you must but remember that your mother’s instinct has never failed you yet.
  • Look after yourself. If you fall apart you are no good to anyone. I am determined not to turn into one of those women you see at the front of the hospital dragging on a cigarette, still wearing their pyjamas after lunch time – I dress, do my hair, and stick on some lippy ready to face the day.  I go out for a walk every day, I drink skinny lattes and read the paper. Do whatever is necessary to keep body and soul together through the stress
  • There is no such thing as the perfect family. Look around you, the families you think are perfect, are not.
  • Your other children will get through this.  I felt so guilty that I had ruined the other three children’s lives, I have not.  It’s not what we planned for them but we hope that their lives have been enhanced. They are more caring, they are more independent, they have had a varied range of life experiences already.  Yes it is really, really tough on them having to be parented by rota or having plans cancelled at the last minute by their little sister’s major spanners in the works, but they will survive and as Theo’s play therapist once said to me “This is just how it is, no-one’s life is perfect (see above)”.  I truly believe they will be better people for it.
  • You will worry about money then you will discover what is important. You will stop sweating the small stuff and things will start to fall into perspective and with some careful planning and management you will survive the practicalities of this new life
  • Make lists, write things down, ask questions but don’t always expect answers, know when to stop asking and just to live in the moment
  • Know that you are not indispensable. Your child needs to be independent from you more than any other child. Your job as a parent is to prepare your child for the big, bad world, when you have a child with additional needs – whether they are medical, physical or a learning disability (or in Daisy’s case all three), this job starts on day one. Leave them with a carer, leave the ward occasionally so they know you will come back, teach them independence, help them learn confidence and to be their own person.
  • You will have a life again. The extremes will be great, the moments of happiness will be concentrated into smaller timescales but you will appreciate them so much more
  • You will meet people; go to places, experience things that your old life will never ever have introduced you to.
  • There will always be someone worse off than you. Be there for them, people will be there for you.
  • Savour every single day with your child. You do not know what tomorrow will bring…..


This guest blog is a repost from Stephanie’s website and the original post can be found here: http://www.wasthisintheplan.co.uk/2011/10/i-wish-someone-had-told-me.html

Sign up to Jeans for Genes Day this year and help us support children affected by genetic disorders like Costello syndrome. Jeans for Genes Day takes place on 21st September 2018