I wish someone had told me........

While having a quick tea break in the parent's 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 (&, 5 & 2) 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, 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 indispensible - 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 occassionally 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 apppreciate 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.....


  1. Anonymous11:29 pm

    Thank you. As someone on the front end of the Costello diagnosis, I am printing this out and keeping it close at hand. Blessings to you!

  2. Anonymous3:56 am

    this is truly touching... My best friend is a 5 year old little girl with costellos... and I am blessed every day just to know her... I can only imagine how amazing Daisy is....

  3. What a beautiful post. Made me cry! Thank you for sharing - will share around my followers etc.

  4. What a brilliant post.I raise adopted children who suffered early trauma and each of your points resonates. Thank you.

  5. Alice Daxon12:55 am


    Your postings are always amazing, but this is probably the best so far!! Thanks,

    Hugs to you & Daisy,

  6. Anonymous4:23 pm

    Shared this on my weekly links post today: http://freeyourparenting.com/2011/10/16/sharing-sunday-13/


  7. Thanks for sharing this beautiful post.

    Hi! Stopping by from MBC. Great blog!
    Have a nice day!

  8. Anonymous10:18 pm

    I normally never read blogs but found yours truly fascinating, sad and heartwarming all at once. Wishing all your family the very best for 2012

  9. I really could not add anything to this xx

  10. Michelle Murray9:10 am

    Thanks so much for sharing a sad but very true post. Since little J was born 13 months ago not 1 week has gone by without him being at a hospital appt. I have read all your 'tips' and I couldn't agree more with each and every single one. #GoldenOldies

  11. Rosie @Eco-Gites of Lenault5:26 pm

    I am fortunate to have 2 boys in apparently good health - however I know that at any moment that could all change so when I got phone call 18 month ago from my husband who was away skiing with the boys for a moment my life fell apart. No Mum wants to hear the words "B may have broken his back." because that is not in the plan. He was lucky and so was I - he had only got 2 hairline fractures and made a full recovery. How different it could have been and I too could have become a parent of a disabled child. It's not in the plan so whilst readers of this post might think what you write about does not apply to them, many do for ALL children and NOBODY knows what tomorrow will hold. There is no plan. Thank you for sharing and stay strong.

  12. Victoria MyLittleLBlog9:47 pm

    im definitely up for asking questions and help, but im so worried that midwives or doctors can think that im stupid or not ready for baby