About Me

Approaching 40, with a pretty successful career, lovely home, husband and 2 gorgeous children. Sounds like I’ve got it made?  I thought so, and then along came an unexpected pregnancy and turned my whole world upside-down.

This blog will follow me on my journey.  I hope I am not a ‘blue’ mama forever, and that at some point my journey will move out of darkness into light.  I may only ever reach an audience of zero, but if it is nothing else this blog is the start of a personal healing process.  If I can help others by candidly sharing some of my experiences, then my journey will be all the sweeter.

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6 thoughts on “About Me”

  1. Just nipped here from an old page link on my blog from when I studied Poetry201 in February. I remembered you from the poem you wrote just before young Freya was born I think- it was very moving. I wondered how you were doing and if you were posting poetry here again now. I read your most recent post with my heart in my stomach and was so relieved that you are still together. Clearly everything’s changed. I don’t know what to say, sorry is tempting but… of course I am and of course I can’t understand, it was bad enough with a pre-term son in SCBU for six weeks with no such diagnosis and I can’t possibly imagine, but I have heard of this disease as my son was ill and I read about all sorts while waiting for test results etc – I’ve not read back through your posts to delve into your journey so far… it may be another good while before I think to nip back and see how you’re all getting on and if you’re writing poetry again. I just found your ‘my poetry page’ and you’ve written an extremely powerful poem about this awful disease. Really I just wanted to say I may be one of an audience zero, but I couldn’t sneak out without saying hallo, wishing you and your family my very best hopes and wishes and leaving you a smile 🙂
    PS- I wasn’t sure where to leave my comment so it’s here.

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    Reply

    • I post the links to the blog on my Freya’s Story Facebook page. I’m trying to raise awareness and have already been able to help a couple of parents get the treatment they needed for their babies because there are so few Drs who understand this disease. Feel free to pop onto the page and like and share if you’re on FB, and ask your friends to like and share too 😊
      http://www.facebook.com/freyasstory
      Thanks again x

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      Reply

      • There’s far too much expectation of over-anxious parenting! My son’s nearly 30 now, but our serious concerns were dismissed less than a week after discharged from SCBU as worrying too much with just a quick examination and his taking some of a feed while there. He nearly died as a result because he needed an urgent op.
        I don’t use facebook myself, hopeless with social media and even my email sometimes but for now I’ve bookmarked your facebook page in my browser and I’ll pass the link on to a couple of friends and maybe family who use it if it helps.

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      • You are right. The day Freya fell ill she really wasn’t that bad, just off her milk and a temperature. Had I not been a cautious parent our situation may have ended very differently, in fact I know it will have. Had Freya been just one week older I think I would have given her calpol to bring her temp down. Only I wouldn’t have known that the temperature would have stayed. If we had been at home the next morning when Freya started to shut down I would have been sleeping. She didn’t make a sound, and I think it is likely that we could have lost her.
        There is so much negative press about parents and an over-used NHS, but it isn’t parents like us that are abusing the system, yet we are the ones worrying about whether we would be wasting the doctors time. Our children are lucky to have us advocating for them aren’t they. So pleased you had a happy ending.
        No worries about the Facebook thing, but if you can pass it on that would be great. Awareness is what is needed to push this disease up the ranking for medical research. I believe that there are more cases than are diagnosed as it can manifest itself like so many other illnesses and it isn’t high up on the list of possibilities for doctors; some haven’t even heard of it!

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      • It is an awful situation and basically medical neglect when it turns out there is serious disease missed only for chossing not to believe. Thankfully, although it is tragic to receive such diagnosis, once you know what you’re up against you at least can be aware of your beautiful daughter’s needs, any warning signs for urgent medical attention etc. I might try, at a future point, to use some of my old photos and write a little something in reflection and share links to your facebook & anything relevant. I’m not quick about these things, don’t have many actual readers at moment, but if it helps direct one or two who it helps or who will share further, then it could be good practice for my article type writing too. So, in the future to-do draft list as of now. struggling a bit to get back to blogging now I’ve a little real work to go and keep up with. Hope you have a lovely weekend with your family 🙂

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