From the beginning...

It’s the summer of 2010, Karen and I are enjoying regular white wine evenings in the garden, happy in the knowledge that we've seen the back of the sleepless nights with our boys and are beginning to feel a little more human again.

‘Us time’ as any couple with kids will know is often the first thing that gets culled from that pre-child life. We fell head-over-heels in love all over again that summer finding time to just be us, the couple that we were before the sleepless nights (perhaps just a tiny bit more reserved but not much!).

Then came the news we were expecting again, our life was about to change forever, in a way neither of us could have ever imagined and so far I'm pleased to say its absolutely for the better.

My initial reaction was one of fear, how can we afford this etc. etc. – fairly standard reaction I guess when an unplanned pregnancy arrives. The days went on and I managed to remind myself that deep down I knew we always wanted a third child but perhaps rather selfishly I didn’t want our new sense of freedom to be compromised.

I have never been able to explain or understand why, but I’m not really the kind of dad that gets engrossed in the whole science of a baby's development during pregnancy, "what fruit is baby the size of today?" etc. Maybe it’s too much for me to register, too daunting, whatever it is, it just isn’t me. – It’s an enthusiasm I totally understand (almost envy) amongst others yet one I just haven’t ever fully embraced. So with this in mind we trot along to our 12 week scan at the hospital, I’m excited at the prospect of being able to see our baby moving, ticking all the boxes, two legs, two arms and a head. All seems well, we don’t get offered a Nuchal Fold Scan but that’s not available at every hospital so in my mind at the time, 'it’s obviously not that important.' I didn’t think anymore of it.

"For me, this is where the role of a Mum reaches a whole new level, one beyond science, the unexplained – Mum's just seem to know"

For some unknown reason Karen decided she wanted the BARTS blood test to screen for various health issues, primarily Down’s Syndrome, something she hadn't given a second thought to when pregnant with Harry or Joe. For me, this is where the role of a Mum reaches a whole new level, one beyond science, the unexplained – Mum’s just seem to know. Again, rather selfishly I didn’t give it too much thought, and just expected the usual call, "Blood tests came back today babe, everything is fine, I'm so relieved" to which I would agree, hang up, then tell everyone at work the great news and think to myself, "I wonder what they were for?"

Not this time however, our tests came back with a one in 12 chance of Trisomy 21 (Down’s Syndrome). A one in 200 is classed as a high chance so one in 12 felt almost inevitable. I remember trying to convince myself (and Karen) otherwise, "Think of it like this, there’s 12 boxes in front of us, one has a million pounds in, we get one chance to pick the million pound box – it's never going to happen…" – This seemed quite reasonable to me at the time but of course you find out in hindsight that these stats are a guide with no exact science and actually a one in 12 is really rather high.

This seems so long ago now but I can still recall everything as it unfolded that afternoon. We were given this news to digest alongside having to make a fairly quick decision whether we wanted to have an amniotic test to give a 100% verdict. At first I thought to myself well yeah lets have it, then I find out there is a genuine risk of miscarriage having such a test.

It's at this point we're faced with serious questions, can we cope with a baby with special needs? How do we feel about termination? I guess everyone has opinions on this but you never really know how you'll feel until faced with these questions for real. As a couple I feel lucky that faced with this scenario for the first time we both felt exactly the same, that we wanted to carry on, but we did feel we had to have the amnio in order to allow ourselves time to prepare.

The test, although very traumatic at the time, went well and there was no harm to the baby. We then had to wait six extremely long days to find out the results, which came back confirming Trisomy 21.

"They muttered amongst themselves nervously then returned to us a ripped piece of notepaper with a website address scribbled on"

What disturbed me was how much of the conversation the consultant and nurse angled towards termination without a single word about what the future may hold for our baby with DS. I asked if they had any literature for us to take away and digest and they muttered amongst themselves nervously then returned to us a ripped piece of notepaper with a website address scribbled on, no leaflets, nothing. I was thrown into confusion and anger all at once and can honestly say looking back now that those particular health care professionals (I’m not speaking for all as I know of people who had very positive experiences at this stage) could quite easily have swayed a couple who were less sure of their decision, into making a choice they may well have regretted for the rest of their lives.

The following days were a mixture of fear and anxiety for me. The first port of call was to utilise the scrap of paper and go visit the Downs Syndrome Association website. I registered as a new parent and within a day or so had received a large pack of informative leaflets covering just about every initial concern I had. This was a free service I can’t thank them enough for, I suddenly didn't feel alone, and was quickly encouraged to read about the countless positive stories of those who were leading full and independent lives. I had also mentioned to a friend who I knew had a nephew with DS about our news and she was so supportive with great stories to tell of her wonderful nephew. She even wrote an email out to a group circular she is a part of where you can chat to families and friends of people living with DS. The email basically asked if anyone had any words of support/advice for a couple she knew who'd just had a pre-natal diagnosis of DS. There was page after page of responses and I still pick the printouts up now and again to read through, they were so heartfelt and genuine.

It can be quite a daunting task reading and digesting everything and I had to leave things for a few days at a time in the early days just to allow the info I had read to sink in.

As with any advise and stories of real life situations, some you'll take to and some you may not like. One thing in particular kept jumping out at me that I just couldn’t shrug off, it seems silly now but at the time was causing me very real anxiety. One parent had written (with all good intention) how you may find that some friends suddenly don’t come round to visit anymore but you’ll soon realise you don’t need people like that in your life…This played havoc with me emotionally, friends are a vital part of who I am today, I don’t want to lose friends, I don’t care if they can’t deal with it that’s not a case of being ‘their problem’ – what if I do lose some friends I’ve had since forever...Thankfully this has yet to materialise, in fact if anything I feel we've gained more friends.

I remember visiting a lifelong friend and his wife and sitting down to tell them the news, both their reaction was one of concern for me initially, followed by an instant reassurance that everything will be fine. His parting comment will stay with me forever, “hey Tom don’t worry about it mate I’ll be here to learn things with you as you go”  Not what I was expecting from him yet exactly what I needed to hear.

After the amnio test had come back positive there was a few days grace before the remaining results came in one of which would determine 100% the sex of our baby.

 "It's very true what I'd read, that people do take their lead from you – tell them with confidence and more often than not they'll react in a positive way"

I recall coming home from work and Karen standing there waiting for me, she told me she'd had a call from the hospital and I immediately thought they'd discovered something else from the tests that may be of concern. She then broke the news, "We're having a girl".  I wanted to run around the house jumping in excitement but instead I fell to my knees in tears of pure joy, hugging my sons who were beaming at the news of having a sister. Amongst all the worry and anxiety of the past few days this felt like a major turning point for me towards accepting everything and moving on in a positive strong manner, after all I now have a daughter to protect. The next challenge was how to tell people...

Karen and I had decided to just stand tall and tell people with confidence, we didn’t shout it from the roof tops but when people asked about the pregnancy we would just tell them outright that, "everything is going well so far, we do know she will have Down's Syndrome but are not exactly sure what to expect (as with any child) so will grow and learn with her," – if people are funny about it well that’s understandable too, they may need time to adjust like us. Thankfully we only ever received positive reactions. It’s very true what I'd read, that people do take their lead from you – tell them with confidence and more often than not they'll react in a positive way.

As the weeks went on we had various scans and one of those picked up on a potential problem with Rosie's heart. To be sure we were sent to Manchester Childrens Hospital where the scanning equipment is more advanced. Here they confirmed that she had a hole in her heart, at first they couldn't say for sure the extent as she was still so small and developing, in some cases, we were told, these initial heart defects can even heal themselves before birth.

We had regular scans from here on and the final scan prior to Rosie's birth (whilst not conclusive) led us to believe the hole had decreased in size and may not even require surgery. All positive we thought and it was now a case of carry on as normal to the birth.






57 comments:

  1. just been reading about Rosies story with my mum and we are both very touched.love to all the family from matthew and lynne.

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  2. A wonderful and inspiring blog for parents of children with SEN.

    A fellow lax player, I'm also the CEO of the Seashell Trust based in Cheadle Hulme.

    I've worked in this field most of my professional life, if I can offer any help or simply answer any questions please contact me: mark.geraghty@seashelltrust.org.uk

    Congratulations to you and your family on the arrival of Rosie, who will fill your days with joy and love, just as your other children have already.

    Sincerest regards Mark

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    1. Hi Mark, Great to hear from you and apologies for my ridiculously delayed response to your message! I'm sure our paths will cross at some point as we will hopefully make use of the wonderful facilities up at the Seashell Trust. Thank you also for your offer of support and kind words.

      Thanks
      Tom

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  3. Hi, finally got round to taking a look at your blog. Beautifully written and what a beautiful family you have. I think should seriously consider writing a book. JKP publishers would be a great one to contact ( editor - emily.mcclave@jkp.com )and ask if they would be interested in you writing, as I have on epilepsy for the 'Can I tell you about...' range, maybe now or in the future. Rosie's smile looks like it would light a room. It was a pleasure to meet you at Will's party x Kate x

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  4. This is my own blog about my experiences with my little girl ..I havn't yet been brave enough to tell anyone about it as its much more personal than my book and open to criticism, but may be soon!

    http://katelambertwrites.tumblr.com/

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  5. This is utterly incredibly beautifully written. We found out about Natty's DS the day she was born, and in so many ways our journeys were different, yet ultimately the same. I am sharing your post tonight, with a couple in the same situation as you.
    Much love, Hayley and the gang at Downs Side Up

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    1. Thank you Hayley – very high praise indeed! I do hope the blog may help the couple you refer to in a positive way. I love reading your posts too - please keep writing :)

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  6. I really enjoyed your story... I too experienced the same with the doctors once they confirmed Anari's DS... We as parents must not accept the TERMINATION option of DS children because they bring such joy to us and the world... Thanks for believing in the future of your daughter...

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    1. Thank you Bernadette, hopefully blogs like this and others will help inform people of the reality about DS so people can make more informed decisions rather than ones upon peer pressure. Love to Anari :)

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  7. hi, i found you through the Brit Mum's Special Needs post and I am very touched by story. you have a beautiful family and a truly gorgeous daughter who will teach you about life with DS. It is so obvious the love that you have for her through the way that you write.
    my favourite line from this post, and it is SO true is this one "It’s very true what I'd read, that people do take their lead from you – tell them with confidence and more often than not they'll react in a positive way" - you choose your attitude every day and lead by example. i look forward to reading all about you and your beautiful little rosie.

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    1. Thank you so much for taking the time to read the blog and to write such lovely words. It's a learning curve everyday but I'm loving every second with my beautiful girl!

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  8. What a fantastic blog. I now have a great niece, Eleanor, with Down's. She is an absolute sweetheart. It's good to read what other familes are experiencing. Love to you all. Judith xxx

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    1. Thanks Judith, very kind! Best wishes to you and your great niece Eleanor.x

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  9. what a lovely blog...my little Molly is 20 weeks old now..she was diagnosed with DS one day post birth..our odds were 1:1800......we are still coming to terms with things tbh but absolutely love our little lady to bits...we also have a 5 year old 'big girl' too.. Scary times but we know we'll be fine xx

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    1. Hi Laura, thank you for your comment. Everyone's experience is different isn't it, we knew prior to birth which I think helped us but I've heard cases where it created worry for others. As people with DS, we are all different. We all have that one thing in common though which is our wonderful beautiful children. Take care and love to Molly.x

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  10. Thank you so much for sharing your truly beautiful & heart-warming story. I was balling my eye's out reading it! To Tom & Karen for choosing to spare your precious daughter's life - your rewards will be great. I pray that your story influences other families to make the same decision that you did. I know that the richest of blessings will shower you all! God Bless, Cristina (Australia)

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    1. Hi Cristina (assuming you are the same Cristina from Australia that messaged me!) I have only just seen your FB comment and have finally replied, sorry for taking so long!

      Thank you for your lovely comment above, and my apologies for making you cry ;)

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  11. Wow - this is powerful stuff. Powerful, beautiful, loving stuff.

    I came here by chance, having seen a cheeky little girl with her tongue poking out in a picture shared on facebook. So many 'likes' and lovely comments, one of my friends had shared - how 'by chance' is that? Anyway, I just had to come to see what the story was behind that beautiful, cheeky little girl's smile. I got to here, your blog. Your 'ode' to your family, to your little girl, to Rosie.

    What a heart-warming story, beautifully written - and oozing with love for the unknown and now the known. I've only read this part of your blog so far - 'From the beginning'... I don't have any stories to share of any relatives with DS. I don't directly know anyone with DS either but still felt compelled to come here.

    If I ever find myself in a situation where I need to, I would definitely encourage expectant or new parents of a child with or possibly faced with DS. After reading you r beautiful words, there would never be any doubts for them ever again. You have shown in such a positive way how you can learn and accept the news with love and dignity and how to move forward and share that news with close friends and family. You are right about telling people with confidence - if they see that you are happy and have accepted the situation - they will embrace and accept it too. Tell someone with doubt in your voice, and you will receive sympathy. I think that's human nature more than anything else.

    I will read other parts of your blog over time, because you have made me want to read more - and who wouldn't want to read more about your gorgeous cute, cheeky little angel? I only have two boys myself who are both in their later teens now - it's far too late for me to consider a 3rd. I was always asked if I would like a girl being as I had 2 boys and my answer was the same as how you felt... 2 is an even number, 3 would be expensive and the boys were at school and I didn't want to have to start all that again. You have been 'gifted' with going through all that again - but this time your little girl will educate you throughout her life, although you clearly know how to love unconditionally already.

    Please keep on writing, comforting, embracing and inspiring other families faced with the same choices and challenges as you were and making them realise that being given the same news is not the end of the world - rather, its the beginning of a new wonderful life of mutual discovery.

    Three cheers to the Downs Syndrome Association for providing all the information you clearly needed and should have at least, in part, got from the so called health professionals, who basically should be ashamed of themselves for the way they treated you. Like you said, many more families could have been in doubt and made decisions they may not otherwise have made had they been better informed or better signposted to the right places and organisations. Lets hope that lessons can be learned from that and hopefully more done to ensure this can't keep happening to family after family.

    God bless you all and wishing you all the best for a wonderful and enlightening future together..

    Paula Gale.
    Derbyshire.

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    1. Hi Paula, Thank you so much for this wonderful message, I have read it re-read it and read it again, and then again -You really brought a teary smile to my face and I feel so very humbled as with the other lovely comments on here.
      Thank you and best wishes to you and your family.x

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  12. Hi
    I am sat here with tears streaming down my face, what a beautiful blog. I have a little baby girl with DS who is 7 months old and we were given the diagnosis 36 hours after birth, and still coming to terms with the diagnosis, but reading your stories puts me at ease, Rosie is absolutley gorgeous, Kathryn, Lancaster x

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    1. Hi Kathryn, I don't mind admitting reading that just brought a tear to my eye. My main purpose of this blog is to make new parents feel 'okay' about the future through reading how normal our life with Rosie really is. Your comment means so much to me and will keep me writing. Thank you and much love and best wishes to you all.
      xx

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  13. Hi Tom,

    I have just come across your blog, via the Down Syndrome Awareness site. It popped up here by another user who had shared your link. When sharing your link the user stated "what a beautiful blog written by a dad". I decided to have a look at your blog when seeing the post comment.

    I read it with admiration of your words to how you described the journey with your wonderful family and of course your beautiful daughter Rosie. I felt most of what you had written in your blog, i could relate to and identify similar experiences with the news of having a child with DS.

    I went through exactly the same emotions, but more importantly, when i were told that my pregnancy was rated at 1in 5, at the time, this made me feel completely unsure of what to expect around my childs future, if i were to go ahead with pregnancy.

    I admit, coming to terms with finding this information out, completely took me by surprise, and termination was on my mind, due to peer pressure. It was funny, while considering my options, for weeks on end, on one particular day, i woke up, and had made a final decision. I had decided (out of the blue), I can do this with out support, and i am dammed not to allow the health professionals to make my decision for me. I went ahead with my pregnancy, although, during this time, the feeling of uncertainty, although comfortable with my decision, happiness set in and pulled though as best i could. I knew i was making the right decision. I told my self, "i am the lucky 1in 5". :)

    During the pregnancy, Dad was not feeling the same as myself and i assumed he just needed time to adjust and process this amazing news.
    Dad is somewhat still struggling in coming to terms with the news, 2 years post pregnancy.

    My love for Keira is growing everyday and the love she gives back to me is ever so more rewarding. I cannot believe Keira is in my life and feel she is a gift that not many people are given in life. I am so thankful for this gift of Keira and had hoped dad would feel the same. Time will tell. :)

    I am thoroughly enjoying the journey myself and Keira are sharing together. I see Keira as my teacher and i am her follower, she is leading the way, and we are just embracing each moment together.

    I am still finding it hard to accept the reality of going ahead with the pregnancy, mainly due to the health issues involved with Keira. However, i relied on all the health professionals to ensure this would be of no significance, from all the information i had been given post labour.

    I wish you and your family well and enjoyed your story very much.

    Take good care Tom and Karen xxx

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    1. Thanks for your comment and also for sharing your story too. I can totally relate to your feeling of "dammed not to allow the health professionals to make my decision for me". Its so overwhelming at first though isn't it? It didn't come naturally to me to have to trust and run with my instinct against the view of a medical professional. This is one of the biggest issues for me, social awareness is a lot harder to raise when the HCP is dishing out instant negative advice. Rosie has completely changed the way I look at life (and the world in general) in the most positive way imaginable. I can also appreciate how Keira's Dad may still struggle, we are all different too after all and he might just need more time, I still have days where I struggle too, but I have learned they are not because of Down's syndrome itself and more how society see's it. It's lovely to hear from you and I wish you all the very best. x

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  14. Thank you for such a lovely read. It is always very helpful to read other people’s experiences.

    I am currently pregnant and have been told we have a 1 in 2 chance of our baby being born with DS. We have received various scans and tests to show that all the major organs look good however we have decided against having the amnio as there is a risk of miscarriage. We are going ahead with the pregnancy whatever the result so we feel there is no need to have the test. I guess it would make our lives a little easier by knowing either way if our baby will be born with DS but we are willing to wait. We have been told there are lots of people out there with our chance who have gone on to have a baby without DS, however the best way form me to deal with it is to prepare for our baby being born with DS.

    Since finding out about the possible outcome, we have found that there is a huge support network out there for anyone that needs it. Like you we signed up to the Downs Syndrome Association and through that we have received useful information and have also met and spoken to different families which has really helped us prepare for might be.

    I guess all we can do now is sit and wait. Now that we know the major organs are OK I have started to relax a little more and enjoy the pregnancy.

    The good thing is, as soon as the baby is born, we are confident the support with be there.

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  15. Thank you for such a lovely read. I am currenlty 21 weeks pregnant and have been told we have a 1 in 2 chance. We have decided against having the amnio as there is a risk of miscarriage, and are going ahead with the pregnancy whatever the result so there is no need to have the test. I guess it would make our lives a little easier by knowing either way if our baby will be born with Down Syndrome but we are willing to wait. Since finding out about the possibility of DS, we have found a huge support network is out there for anyone that needs it. We have met nad spoken to different families and this has really helped us prepare for might be.

    I guess all we can do now is sit and wait. Now that we know the major organs are OK I have started to relax a little more and enjoy the pregnancy.

    The good thing is, as soon as the baby is born, we are confident the support with be there.

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  16. Congratulations on your pregnancy and thank you for sharing your story so far. Great news that all the major organs are looking good. You can also, as you say, be rest assured that if your baby is born with DS you will not be short of positive support :)

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  17. Thank you for sharing this, I was particularly moved by the beautiful wording on Rosie's birth announcement cards. Open-hearted, informative and honest- I loved so much how you took the lead in this way and invited your friends to share your journey with you. I too have 3 children and our middle daughter who is a passionate filmmaker, started making films and blogging about life with her little sister (with D.S.) a few years ago. She produces a film annually called "My little Sister (who happen's to have Down's syndrome) Part 1,Part 2 etc... She puts together and narrates footage of their everyday (& often funny) life together being home educated in the Welsh hills. You and your children might enjoy watching the films :)
    Her blog and films can be found at www.agnieszkaproductions.co.uk

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    1. Hi Anita, thanks so much for your comment and for the link to your daughters video blog page - it's fantastic. She has a real talent for film making and her love for her sister is so plain to see. Thank you for sharing :)

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  18. I am so deeply touched by your story and wish you joy and great happiness as you travel this road together Every child is precious and we are indeed blessed by their presence in our lives .Rosie is beautiful and so are your two sons. Treasures here on earth.x

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    1. Thank you Heather that's so kind of you and apologies for my delay in replying. x

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  19. So wonderful to see such an honest, beautifully written account of the joys, fears, anxieties & decisions made along the journey you have all travelled before eventually meeting & loving Rosie. I am sure that many other future parents of children with DS will take great comfort & courage to take what ever steps are required from reading your words. As a professional who has spent most of my working life, searching & looking at ways to include, encourage, motivate & inspire not just people with SEN but to extend the experience to families, friends, carers & more importantly the general population, in finding ways to open their eyes & to see the wealth of opportunity that is available to all, I truly believe the opportunity is out there and is shifting perpectives every second of every day. Thanks again for sharing your story and good luck to your wonderful & complete family, Tracy Bailey, Teacher at The Royal College, Seashell Trust, Cheadle Hulme.

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    1. Thank you Tracy - Maybe our paths will cross one day as you are close by in fact my son used to go swimming at the Seashell Trust. Thanks again for your lovely comment – I do hope people gain comfort and or support from reading about Rosie. x

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  20. Hi Tom, I came across your site by accident & I just fell in love with the letter you wrote to Rosie. Tears flowing .
    Just wanted to say Karen was lucky to have you by her side & Rosie was lucky to choose you both as her parents. In 2004 I was pregnant with my little boy Oliver. My husband & Obsetricion Never gave me a positive feeling and coerced me to terminate. It's been 9 years and I miss my baby, I was not given any information or any time to think for myself. I feel terrible everyday, but I want to wish you & Karen so much love with your gorgeous Angel xx

    Nancy Cairo

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    1. Hi Nancy, thank you so much for writing to me. I have to say your comment must have taken a lot of courage to write. I'm so saddened to know that mis-information and a lack of support has led you to make a choice that effects you everyday. This is another reason I do what I do as so many people (ourselves included) are encouraged to terminate the life of their child by people who know very little (if anything at all) about the reality of raising a child with DS. We still have a lot to learn of course but one thing is for sure we would not change Rosie for the world. I'm truly humbled by your message and thank you so much for your kind words. Wishing you all the very best. xx

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  21. I came across your blog just a few weeks ago and I just wanted to say how much I'm enjoying reading it. My niece Jasmine was born in November 2009 with Down's Syndrome, something that wasn't detected when my sister was pregnant. Understandably, it came as a huge shock to us all when Jaz appeared 6 weeks early, a tiny 4lbs 8oz and we were told she also had DS. If only we had all known then how amazing, hilarious and life changing having Jaz in our lives would be, it would have saved us many tears!

    Rosie looks like a cheeky little madam and I'm sure she fills your life with so much love and laughter as Jaz does to ours. I had never even met anyone with DS before Jaz came along and I think we were all scared because we knew so little about it and about what the future may hold for her but now we can see her life is full of possibility, just like everyone elses. Blogs like yours are doing a great job of raising awareness and giving people a true picture of what living with an amazing little person with DS is like.

    We call Jaz our 'magic bean' because she was so tiny when she was born and because she really does fill our lives with magic every day.

    I believe children with DS are sent to families that can take care of them and nurture them and you are certainly proving that. Keep up the good work!

    Jess

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  22. I came across your blog just a few weeks ago and I just wanted to say how much I'm enjoying reading it. My niece Jasmine was born in November 2009 with Down's Syndrome, something that wasn't detected when my sister was pregnant. Understandably, it came as a huge shock to us all when Jaz appeared 6 weeks early, a tiny 4lbs 8oz and we were told she also had DS. If only we had all known then how amazing, hilarious and life changing having Jaz in our lives would be, it would have saved us many tears!

    Rosie looks like a cheeky little madam and I'm sure she fills your life with so much love and laughter as Jaz does to ours. I had never even met anyone with DS before Jaz came along and I think we were all scared because we knew so little about it and about what the future may hold for her but now we can see her life is full of possibility, just like everyone elses. Blogs like yours are doing a great job of raising awareness and giving people a true picture of what living with an amazing little person with DS is like.

    We call Jaz our 'magic bean' because she was so tiny when she was born and because she really does fill our lives with magic every day.

    I believe children with DS are sent to families that can take care of them and nurture them and you are certainly proving that. Keep up the good work!

    Jess

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  23. How lovely... Jaz the 'magic bean' :) Thanks so much for your kind words. We too knew very little about DS and so wanted to add our contribution as we go for others to learn from - or just to see that life really is okay when your child has DS.
    Take care. x

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  24. Great to read the back story and get to know a little more, you have handsome boys there too Tom. Mich x

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  25. Hi Michelle. Thank you so much for taking the time to read our story. x

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  26. Really enjoyed reading your story, Rosie is a star! Like you we have two older boys and one gorgeous little girl called Elodie she too had a VSD and had it fixed at Bristol Children's hospital. Elodie is seven months and doing well ! Our family and everyone around her loves her! She is a real blessing!! It's a great blog and it's really helpful to read your stories, it makes such a diffference! shame all new parents don't get a list of blogs like yours and Hayley's it would be great if they did!

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    1. Thank you for taking the time to comment. It would be great if parent blogs were easier to find or better still shown to people at time of diagnosis! Best wishes to you all :)

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  27. Great blog mate...

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  28. My wife is expecting, and while we wait for our 3 month scan we have discussed what we would do based on various outcomes.

    We agreed that if the baby was diagnosed with Downs Syndrome, we would terminate the pregnancy immediately.

    I just wanted to let you know that reading your wonderful blog has sown a seed of doubt in that decision.

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    1. I hope it's kosher to reply on someone else's blog, and please accept my apologies and tell me so if it isn't. Your decision is yours and your wife's to make and no one else's, but I hope you continue exploring that seed of doubt. My now teen-age daughter with Down syndrome has made my life immeasurably more, better, fuller. I believe with all my heart the more you explore and learn, the more that seed will grow until it becomes a pasture, a forest, an impenetrable jungle of doubt.

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    2. Thanks so much for your comment and above all sharing your honesty. I have to say your comment made my day, if sharing our life with Rosie can change opinions or at the very least make people stop and think "Having a child with DS doesn't seem all that bad after all" then it makes everything worthwhile. Thank you once again.

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  29. I've found your blog through the BBC website. I've only read the "From the beginning" section, and already feel so moved by your story. You are an inspirational man, with three beautiful children.

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    1. Thats really kind of you to say. I hope you enjoy reading further posts too :)

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  30. I have only recently started reading parenting blogs and found yours only this week. I have worked with people with DS in the past and think they and their families are all amazing people. Rosie is a beautiful little girl and I love reading all about her. I can see how much a blog like your helps others in a similar situation and has inspired me to look into blogging about my little boy who suffers with severe eczema.

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    1. Thanks for your kind message. Let me know if you get up and running with your blog too :)

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  31. My sister linked me to your blog, and as a fellow DS dad it's a fine discovery indeed. Just a wee bit ago my daughter Elizabeth was the age of your beautiful Rosie, and now she's a 14-year old freshman in high school. It isn't all wine and roses, to be sure, but I still feel like somehow I got "picked" to be part of this adventure, one I wouldn't trade for anything in the world. Carry on!

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  32. My sister linked me to your blog, and as a fellow DS dad I'll be back to read a lot more. Wasn't long ago at all that my daughter Elizabeth was the same age as your beautiful daughter Rosie, and somehow time fast-forwarded and this year she started high school. This DS parenting gig isn't completely wine and roses to be sure, but whatever is in second place is so far back there it's almost out of sight.

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    1. What a great message, thanks for your comment and best of luck to Elizabeth for High School.

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  33. Hi Tom,
    Thanks for being such an inspiration...and giving out a lot of a peace and encouragement to me...My baby boy Yahiya, who is now 8 months old is a DS baby. We got to knew about this on the 2nd day of his birth. I am a Pakistani living in the Middle east. Our baby was born in our home country at one of the best hospital of the country but it was all but a real SHOCK for us. I dint knew what to do other than crying but my husband was the real support and still is. We are doing the same for Yahiya what we did for our two elder children 5 and 2.5 yrs old respectively....trying to give him a so called NORMAL life and yes our baby is responding really well to all this. Unfortunately, theres no information/guidance given to the parents of such babies in our country :( and there is so much over the internet that sometimes confuse/worry me. Could you please help me sort the information or how to join a particular group tht helps me to understand what to expect and when for Yahiya...as these beautiful Babies are unique in a lot of ways :) I truly love my baby just like any mom and I do feel blessed but the only major concern i have is that i need proper guidance so I can make him a successful person of the society and independent as well :)

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    1. Hi there. Thank you for your lovely message about Yahiya. I'm sorry to hear that there are no information resources for you in your country. There is a wonderful group called 'Future of Downs' where parents can interact with each other, it really is a wonderful resource too, I would strongly recommend you take a look there: http://www.futureofdowns.com

      We have a national charity based organisation here in the UK called 'The Down's syndrome association' and they too have a good informative website with tips, ideas and guides.
      http://www.downs-syndrome.org.uk

      I wish you all the best with Yahiya (lovely name) and to the rest of your family. Thank you for making contact :)

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  34. Hi!! Love love love your blog!! Rosie is beautiful! I think you guys would be a great fit for my Down Syndrome Diaries project. I have a physical journal that will be traveling the world to parents and loved ones of those with that little extra chromosome. Each person will handwrite an entry and then send the journal to the next person on the list. Take a look at more info at www.benthroughitall.com. ��

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  35. I met your Mum Jo recently and she remind me of a story I read many years ago called 'Gods tattered Angel' which changed my outlook to children like Rosie. The child wasn't Downs but was born with complicated illnesses and was up for adoption. The family was told she was unadoptable but they went ahead and adopted. They cared for Grace 9 years and thought of it to be a privilege to look after 'Gods Tattered Angel'. Children like Rosie give so much joy its a shame that the doctors and nurses cannot that. God sees us all perfect.

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