A beam of light…

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The last few posts I have written and shared have been somewhat hopeless. I have been feeling an anxiety I have never known before. Defeatist too. The testing has hit us all – not the testing itself, when you really think about it it’s no biggie and things havent really changed THAT much – but the news articles and journalism surrounding it, the statistics (suggesting that the new test will result in a mere 12 babies a year being born with DS) and the idea that a pregnancy can be ended up to 40 weeks if the baby has Downs.

We have heard countless stories from mothers-to-be who have been bullied, ridiculed, mocked or laughed at by medical professionals for even considering to carry on. Many more negative stories of how a diagnosis was delivered. I myself had a bad experience with a consultant obstetrician with my subsequent pregnancy after Seb because I said I didn’t want an amnio “What? Why would you put yourself through that again?” she said, aghast,

After I posted about our trip to London, I was overwhelmed by some of the comments and messages of support I received. Some from personal friends merely saying they were thinking of me, or felt sad that I was so upset, some from friends who work with kids with special needs telling me how fulfilling their jobs were, some who know Seb personally and some on this page which just echoed my own feelings and made me feel less like I was going mad. Thank you every one of you.

But best of all, I received a message from a mum-to-be and, with her permission, I would like to share her experience.

“I’m currently 33 weeks pregnant with a little girl who will be born with Down syndrome. We know because we paid for the test, just because for us we knew we needed some certainty, so we could enjoy the pregnancy and we were not going to risk loosing her through an amino. We’ve been very lucky and had great support from all consultants, nurses and midwives and have never been made to feel that the diagnosis was a bad thing. In fact at one scan our consultant described our baby as perfect…I could have kissed him because that was just how we felt.

I’ve purposefully not read any of the press about the testing as I still have to protect myself a bit but I have read many of the posts from parents like yourself. The people who, without even knowing, reassured me through this pregnancy. It’s been my turning point. Seeing you all post pictures proving to the world that Down Syndrome is not debilitating and all the other horrific worlds that have been used, made me so excited to meet my little girl and also show everyone who will listen just how amazing she will be.

I’m not sure that I’m really making much sense but I just wanted you to know that I may only be 1 person but you and Seb have helped me no end!
I just wanted to share an experience I had today at my 34 week midwife appointment.

I was lying on the bed as she worked out what wonderful position my little lady had got herself into. She asked me if I had any more scans coming up.

I said ‘yes!’ She hadn’t mentioned anything about the diagnosis, I was unsure if she had really read my notes so I told her that my baby had Down Syndrome. She looked at me and said, ‘I know’. It was like it just didn’t matter to her, this was just a routine appointment and it made no difference. Which is just how it should have been!

She then said to me, ‘Can I just say that I am so happy that I get to see you today and you chose to keep your baby. I have no idea when testing is going to stop or where it will lead but you and your baby are going to have a wonderful life. You made the right decision.

At that point I cried!

I guess there are people out there in the medical profession who feel the same as us. Today gave me hope!”

So there you have it. The most wonderful message I could have read. I know many of us within the DS community who are speaking with midwives and student midwives, The DSA has been running it’s Tell It Right, Start It Right campaign for several years now and I have been lucky enough to speak in Yeovil, in my role as a mum, and also at The Universtiy of the West of England in a couple of weeks.

Keep doing what you’re doing people. Every single one of you. Living your typical lives and creating little whirlwinds of magic. By being seen and heard and included, you and your children ARE making change. By going to schools and clubs and parties. Parent bloggers, facebook posters, advocates, mums and dads, aunties, uncles, grandparents, friends, carers, professionals – you are all changing things. Super slowly and, at times, frustratingly so.

I cannot wait to “meet” the new arrival in a few weeks time, who has landed herself such a wonderfully open minded, loving and strong mummy! Thank you SO MUCH for sharing your story, YOU have given me hope, and so have the professionals delivering your prenatal care xx

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4 thoughts on “A beam of light…”

  1. tenacitymynameistheo says:

    Dear Caroline,
    The day after your last blog piece was written, the doctors called me and my partner in to discuss ‘a moderate to serious life-changing’ discovery about my premature baby, Theo. Yes, it was Down’s Syndrome and, yes, it was completely shocking. Like Seb (who is my daily inspiration) the antenatal tests had come back as low risk. February 3rd was the day our lives shifted gear. I couldn’t eat, yet had to pump breast milk, it was (and kind of still is) dreadful. I am determined not to miss those first magical months, and have felt the need to ‘get out’ what I feel which shifts around on a daily basis as I come to terms with things. I feel so incredibly sad when I should be feeling incredibly full of joy. It is most confusing. I wanted to touch base with you to thank you. Seb and Downs Side Up’s Natty are bright shining lights in this new space I find the three of us in.
    I have also started a blog, it’s early days, but I thought it would be useful to catalogue what it is like at such a raw stage. Also, I know I will look back and forget as it’s effort enough to go into NICU everyday (Theo was born at 29 weeks and still has a month to go before he is out of hospital). If it is one day any kind of help with anyone else in this position then that can only be a good thing. All I can say is I fear the future so much right now.
    Thank you again, truly,
    Claire

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    • Oh Claire, i rely, genuinely feel your pain. It is a hurt like no other. I remember physically hurting with the “grief” i felt and i thought it would never ever leave. I imagined a whole life stretched in front of me of heartache. You have the added stress of being hospitalised too so your world is very far removed from reality at the moment, you have enough to deal with becoming a first time mum, let alone all the rest thrown in. I also remember those conflicting feelings – of utter despair but love too – it is so confusing. I will never forget the day i was bouncing Seb in his chair and i had found out a long term ex had had his first baby and i sobbed and sobbed and sobbed with resentment that he hadn’t had a child with DS but i had and as i sobbed and bounced Seb in his chair his face lit up and he flashed me the biggest smile and i have never known pain like it. I felt guilt, i felt love, i felt hate, i felt despair, i felt fear. But the love was as overwhelming as the other emotions. Bit by bit the hurt will begin to lift as Theo starts to shine through his diagnosis and his diagnosis will eventually be a really smart part of who he is. he is not “downs syndrome”, he is Theo. He is your son and he will be a reflection of his family. He will look like you and he will like the things that you encourage and he won’t be like anyone else with DS. I promise you. I know that you will find it really hard to believe it right now but one day it won’t be a big deal at all. But in the meantime, as i know you won’t believe me because i wouldn’t have believed me, just allow yourself to grieve but hold faith that one day it will be ok. It will be ok. If you want to get in touch please feel free. I have a FB page too which you may have already found. Lots of love to you all and hoping Theo is soon out of NICU and home where he belongs cxxxx

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