Guardian Article

Posted on Nov 14, 2009 | 36 comments

Today, The Guardian publishes an article about May and I.

The manner in which they published it has really pleased me. I was concerned that the title or photo would showcase the misery of our situation.

I imagined a photo of us, our faces bent forward under the weight of our tragic lives, beneath a title reading something like, “The Ever-Suffering Life of the Brain-Damaged Baby” or “Pity This Poor Brain-Damaged Baby.”

Having re-read those gems, it’s probably a good thing I’m not a sub-editor for The Guardian.

Instead, the editor and photographer picked up on the positivity of the piece, and reflected the love and admiration I have for my amazing daughter.

I’m one proud Mama today.

Photo accompanying the article: Martin Goodwin, 2009

36 Comments

  1. Hi,

    I read your article in the Guardian today, and had to come and read the whole blog. I am an American living in the UK, and perhaps most relevantly, I am a grown woman with CP. Reading through your posts, I just wanted to say something I think my parents would say as well – you can never tell what your baby will do in the future. I have some extent of brain damage – how extensive I couldn’t really tell you, as I don’t think they MRIed me in childhood, and I only got told myself during an MRI for other reasons. But I too fisted my hands…almost continuously in childhood, especially the right, and still do for comfort, though I can open them if I think about it hard enough. I too had (and still have) twitches and spasms of the face and other body parts. I didn’t sit up, crawl, or reach at all ‘on target’. My legs and arms still don’t always go where I want them, and I have to think about every motion. But, I also walk mostly independently, have just finished a PhD, and have long proven wrong doctors and physios who said I would never walk or talk.

    I don’t know what the future holds for May, but in my experience the dedication of parents who are willing to keep challenging their kids (even when the kids would rather not be pushed) and who are not shy about demanding the most from doctors, schools, and other professionals, counts for a lot. Keep challenging her and yourselves, and she will respond to the best of her ability.

    Good luck and best wishes!

    • Not only did your comment have an impact on me, but others who have read my site have been inspired by your story.

      Thank you so much for this. I have no idea what the future holds for May either, but I will remain as dedicated as you and your parents were!

  2. I just read your piece in the Guardian and I was very moved. Thank you for your honesty. Your love for May and your husband shone through.

  3. Thanks to the Guardian I have just discovered your blog. It is wonderful to read, very uplifting and I sincerely hope many parents of children with any kind of disability will find it helpful and encouraging. You are really doing a great service to all parents with your honest and heartfelt comments and observations. I hope that May will continue to fill your lives with joy as she has done so far.

  4. Just read your article. it allmost exactly mirrors our experience. Our son Philip was born in allmost identical circumstances and your experience as described mirrors ours. As Phils dad I can remember whilst my missus (Chris) was left in hospital Phil was in the SCBU and I was at home alone trying to come to terms with this potential disaster I remember packing up all the new clothes and nusery furniture convinced he would never be able to come home. Im writing this 30years later our son is sat at my feet although he lives independantly he still comes home every weekend.

    You are about to embark on an amazing journey there will be tears, battles and heartache. But there will be more pleasure and joy than you can imagine. I could recite a long list of things Phil cant do but thats not Phil he is amazing and has totally transformed our lifes for the better.

    I wish you well and will follow your blog with interest

    Paul White

  5. Have just had the delight of reading the article in the family section of the Guardian. What a wonderful and honest insight into your life with May. Wishing yourself and your family all the best. Hannah and Maddox

  6. You should be proud. You sound like wonderful parents.

  7. Best wishes and hugs to you all. May is so beautiful. X

  8. can’t encapsulate the feelings your guardian article has left me with. tears streaming down my face, i admire your honesty and love. bless you!

  9. Hi Stacie,
    I have just read your article in The Guardian and can not believe how similar your experience was too mine. Fortunately for us and our son Joe-Joe who is now five, he did not suffer any brain damage, and is fine now. But reading your article took me back five years – Joe-Joe was in SCUBU, I had a reaction to the epidural and couldn’t get out of bed and was kept in hospital for 10 days.
    I wish you and your beautiful family all the luck and love in the world.
    Angie Colman

  10. Have just read article, felt I had to come and look at blog. Having stood in SCBU as part of the medical staff and not known what or how to say anything to parents I loved your article. As you say parents of babies that you take home at 24hrs have no concept of what happens when everything changes. Thank you.

  11. Forgot to say what a beautiful little girl! I have two 2yrs and 8mnths, lol at the frenzy of joy commnet as my smallest has been doing that all day at a cardboard box.

  12. You are inspirational!

    What a beautiful little girl and a lovely family xx

  13. Lovely article. You seem like the best sort of mother: loving, patient, without expectations. All the best for the future with your gorgeous, remarkable girl.

  14. Thank you so much for your wonderful article in the Guardian today. We have been through the same situation but I have been completely unable to express all those feelings as you have been able to. I have been in tears reading your account with the same memory of not eating, being completely numb and sitting next to the cot in SCBU just watching and waiting. Fortunately our daughter is doing so much better than expected and I am so pleased to hear that May continues to defy expectations too. I wish you all the very best for the future.

    Abi

  15. What an amazing piece of writing Stacie and a beautiful daughter that you obviously are so proud of. I finished your story in tears, many similarities and also differences to my own life. You have a very beautiful daughter, well done. X

  16. Hi,

    I’m an Australian mum about 5 years further down the journey of parenting a child with CP than you are. A friend in the UK forwarded me a link to your blog and the Guardian article.

    Whilst my son’s start to life was slightly different, there are many similarities – a grim prognosis, doubts (and then relief) about breastfeeding, long days in the NICU where I felt myself overwhelmed by the medical terminology, a fear of the incredible unknown and of what the future would hold and a pure state of shock that my experience as a first time mum could have suddenly taken such a dramatic and unexpected turn.

    At age 5, my son is my greatest inspiration. Yes, he has some challenges but he’s far surpassed any of the early prognoses given by doctors. He’s a life loving, HAPPY young boy. And that’s what as a mother you really wish for.

    I’ve been blogging about our journey for a few years now. I have met some other great families through the blogosphere and find writing about our journey to be a very rewarding and cathartic experience. I will add you to my blog roll.

    All the best in accessing the very best of services and therapy for your daughter and for enjoying her for the amazing, incredible, resilient little girl that she is! Thanks for sharing your story.

    Dianne

    • I’ve had a look at your blog. It is always great to find other parents with such positive attitudes. I’ll be linking to your blog on my site. Thank you!

  17. Just popped over after reading your Guardian article to say your little daughter is SO GORGEOUS! Look at those big eyes! Your story is amazing, it really struck a chord with me particularly after reading an entirely different story recently about how the parents of a child with disabilities reacted to her.

    I wish you all the strength, love and happiness in the world :)

  18. Hello, just read the piece on the Guardian about May, you and your husband. I was glad to see you had a blog as I really wanted to read more about May’s progress. I love the photograph of her in the little denim skirt. She’s an absolute beauty.

  19. I loved reading your article in the family section of the guardian I am now 21 and have CP and am registered as severely sight impaired all connected but as people have said the determination of me and my parents well paid off without them pushing me and the effort we put in I would not be walking today and yes we are different and may need assistance and I have been in wheelchair for a year but I have achieved so much and with the help of my guide dog, parents, friends and everyone who believes and accepts me for who I am admires for what I have achieved so far, I have now been working for 7 months. Well Done you for sharing your story and it reminded me of what my parents told me of what happened to me and how devastated they were and it is hard at times as I am in a family of 7 and have 4 sisters and a brother who are all normal and I am different but I have accepted who I am.

    Thanks for sharing your lovely story May is absolutely gorgeous and I just wish you and her all the luck in the world Dont give up!

    Lena

    • Thank you for sharing your story!

      It is wonderful to read about how much you have accomplished with CP. Very inspiring!

  20. Hi,

    I have never written in response to a newspaper article before but feel compelled to write to you after reading your article in the Guardian yesterday. I travelled your journey with you and was happy with you at the end when there was joy and hope.
    She is such a beautiful baby. I want to wish you and Gareth all the strength and luck for the future. May your amazing daughter continue to defy the odds. I look forward to reading about her progress. X

  21. I read your article yesterday in the Guardian and was very touched by it.Our first baby had multiple handicaps and was stillborn.We went on to have 2 more children.Our daughter has Type 1 diabetes and has had it since she was 4.She is now grown up and has 2 beautiful little girls.Our son has 3 children Having been through what we went through you never take anything for granted again.
    Enjoy May and I shall be reading your blog every time you post.x

  22. Thank you for your heart moving story about your journey with May and particularly your beautiful words about your husband’s love for her moving your heart towards opening to loving her too. Your writing is so beautifully explicit I felt as if I was alongside you all the way.

  23. I have just sat down after taking the children to school and finally got round to reading Saturday’s Guardian – as ever, skipping straight to the Family Section.
    I have read the story of your family with tears rolling down my face. The moment you so beautifully recounted when your Husband sang to your baby broke my heart. I truly hope that May continues to fill you with hope and joy and no matter what the future holds, you have been blessed with an amazing daughter. Good luck – you will need it – parenting it a challenge!!

  24. Hi,

    Like Maisie, I’ve never felt compelled to write a response to a newspaper article before, but thought I would as you’re responsible for making me blub like a big girl’s blouse into my weetabix!
    I have nothing different to add, but want to agree with everyone who said your family is inspiring and positive and loving, and that’s fantastic! All families face challenges and you will face more, but with your attitude May can only go from strength to strength.
    I should add, May is gorgeous, but I think you both know that!

    Love, strength, luck and happiness to the three of you. X

  25. I found your article and blog on N0thingButEverything’s blog. She has been a great support to me. I found resonance with your SCBU story, as my son too moved from room to room until he was able to come home 16 days after his birth. He too was born at term (in London) after an uneventful pregnancy. He is 18 months old now. He is my sunshine. And he is doing great things, just as your daughter will do, continuing to surprise you. I’m so thankful that your article was posted in the Guardian. There are more of us out there and having that support and the connection has been so helpful to me. I am in Cairo and I have found my support in other mom’s of CP kids through their blogs and in CP moms yahoo group. Thank you for sharing your story and your raw honesty.

  26. Hi there – I found your blog through the Guardian Family section after your article was published on Saturday. Your story is so inspirational, sounds like May is doing brilliantly! She is so gorgeous. I’ve added you to my blogroll and will be checking in regularly to see how you’re all doing!

  27. Hi Stacie,

    I was so moved by your beautiful piece in The Guardian at the weekend. Your daughter is absolutely gorgeous and you are clearly two wonderful parents.
    Your story reminded me so much of a little boy that I teach who has cp and other difficulties. His mum tells me that when he was born the outlook seemed so very bleak and they were desolate. Now he is a wonderful, cheeky, seven year old who is adored by his classmates and adults alike. He is such a happy, vibrant personality with a smile that could power the whole village and his progress has astonished everyone.

    I send you so much love and luck and will be following your blog each time you post.

    Love to you all xxx

  28. Hi Stacie
    Your article is very moving and had a big impact on me. You two are wonderful parents. May is so beautiful and growing strong with every day and so my question is maybe irrelevant but bothers me for a few days now. I am wondering why did it take so long for May to be born, couldn’t a caesarian section be performed to speed things up and ease the trauma for you and May? I hope you are not offended by my couriosity.

    • I’m not offended, but I also don’t have an answer for you. I’m not a doctor so I really don’t know if it would have helped.

  29. I also wondered this about my own daughters birth as doctors were reluctant to perform a caesarian despite her showing signs of distress. I was told afterwards that research has shown that babies born by caesarian are often very traumatised by their quick entry into the world and that a natural birth, where possible is always the best way forward. My baby was, in the end, born by emergency caesarian however and we were told the damage had been done much earlier and nothing would have prevented it. Hope this helps?

  30. Hi Stacie
    I have read your lovely article in the Guardian, and today I brought it into work as inspiration for my colleagues. I am an educational support worker in a further education college supporting students with learning difficulties and disabilities, where achievements often go way beyond expectations.
    I found your very personal account so touching, to me it was like reading a love story, especially how your husband stood by you and helped you out of the darkness. We learn so much from each other but only love can keep it all together!

  31. A friend directed me to your blog and your story is so similar to ours that I wanted to share some of our story with you.

    Lily was born in March 2007, I was induced early because of hypertension and she was delivered by ventouse as she was getting stressed. She howled for hours after delivery and they said she had a headache from the ventouse delivery. I brought her to the ward with me and tried and failed to feed her for a long long time. She had no suck or swallow and was disinterested in feeding. A paed came and immediately transferred her to NICU as she was having neonatal seizures and not breathing. So subtle I never noticed, although I beat myself up every day, how could I not have noticed. On a cocktail of antiseizure meds she stabilises after days under sedation. An MRI and eeg later they tell us there is considerable damage to the front,and right sides of the brain and the corpus callosum which links the 2 sides together. HIE, stage 2. We are told she won’t die from it but she may not do very well either, her future is uncertain. We leave the hospital weeks later being told to watch for milestones, does she smile, etc.
    Her official diagnosis is HIE, hemiplegia CP, microcephaly, epilepsy and global development delay. Her development is delayed, she is always later reaching milestones than her peers but so far she HAS reached them.
    TODAY she is 2 years and 10 months old. She started to walk at christmas, she has about 10-15 words and has just started a preschool for children with special needs. She is 10 months seizure free!! YAY!!
    She has achieved much more than we ever thought she would, than they thought she would also.

    Take hope from this, I wish I’d been able to read stories about older children with HIE when Lily was born. Early Intervention is key, keep at the therapies, the physio, the speech therapy, the occupational therapy but most of all love and believe xx

    • What a wonderful story! Thank you so much for writing in. Sounds like Lily is doing amazing – isn’t she incredible!

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