Wednesday, 1 May 2013

What if...?

I've been really struggling to find the motivation to write these last few days, 'writers block' I think they call it... a perfectly feasible explanation if I were indeed a writer but I'm not. I'm just a Dad who rambles now and then about his beautiful daughter – nope writers block it isn't. Perhaps I'm feeling the pressure to deliver some sort of perfect and profound post since becoming a MADS finalist?

In all honesty these are just excuses for why my train of thought has been knocked off kilter this last week or so. My mind has been stuck in a little rut consuming itself with those dreaded 'What ifs'... 


What if I don't ever get used to the inevitable stares from the ignorant corners of society?
What if Rosie can't ever walk?
What if Rosie attends school and she's the only person in her class not to get a party invite?
What if she's bullied and picked on by her peers and she thinks they are her friends?
What if name calling leaves a lasting mental scar on her and/or her brothers?
What if she becomes too dependent when she's older?
What if I become so protective it affects her ability to become independent?
What if I can't do enough to help her reach her full potential?
What if I can't afford the extra classes or development tools she could really use to her benefit?
What if she does need that further heart surgery in her twenties?
What if...and the list goes on.

I'd do well to remind myself of all the 'what ifs' that spun around my head before she was born that never materialised and seem so daft now like, what if I can't bond with her, what if friends stop visiting etc... 

This post doesn't really sit well with the blog title The Futures Rosie does it?! However I've always promised to be open/honest and this is where I am at this particular moment of writing. 
I hope to look back on that list above one day when Rosie's older and laugh, maybe even feel a bit silly for ever worrying about them at all but for now its something I'm struggling with a little.

You'll be pleased to know that whilst I've had a wobbly few days Rosie has carried on as normal. Her brilliant sense of humour shining through as always and illustrated perfectly in the pictures below in her new glasses. xx






45 comments:

  1. I think every parent has a list of concerns for their child's future but you hit the nail on the head saying how ridiculous your initial worries were. There is nothing we can do about the future yet, just build her up with your love and know that you will always be there to support her. Bee x

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  2. I understand these worries. My baby boy Asa is almost 10 months & has ds & sometimes I ask similar questions. Found this post quite moving & read with tears in my eyes. Thanks for being so honest. I think it helps those of us who are 'newer' to this journey. Keep blogging & being an amazing daddy to Rosie & her brothers. You're doing a great job. X

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    1. That's really kind thank you Lizz. It's a fine line as I know people find a lot of inspiration from the positives but I'd be kidding myself if I said life was always a breeze.x

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  3. This is a really honest & moving post - and, as I'm not even a parent, never mind a parent of a DS child, I probably can't offer much constructive comment. But I guess I'd say - you never know what the future will be, you can only think about the most likely "what ifs" and plan for those...and the others? Well, you & your wife will do your best to meet them head on with the same wisdom, courage, love and sheer just-get-on-with-it-edness that you have met all the challenges so far. I think your concerns show just how much you love your three wonderful children: with your support they will rise to meet every challenge, those now, and those when you have gone and they rely on everything you have taugt them. It will be frustratng sometimes (maybe for Rosie more than the others - but maybe not!) but I guess you will teach them well.

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  4. I also understand the way u feel I have a 4 year old daughter with allvthe same concerns as u are feeling at the moment. But one thing I will say if u believe your child can do everything they will they needs us as parents to encourage them to try new things and learn like there siblings or friends. We were told our daughter woukd never walk crawl and would not live past two days then it was her 1st birthday. And now she is 4 and does so many things we were told she would never do. She goes to school with normal children because she is no different to anyone other than she has a bigger heart xoxoxox my advice is have your fears but remember the doctors are not always right and saying u cant do certain things with your child bis the governmens way of getting organisations involved to get paid I have never had help from any one and done everything I was told to her peadiatrrisian asked us one day what have we done.... we were scared we had donw something wrong until he stated what ever u r doing with her dont stop she is so advanced all because we knew she could dobit xoxoxoxo

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    1. What a lovely comment, very motivational too – thank you for sharing and taking the time to write.x

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  5. Quite typical to have a wobble Tom. But none of those things are going to happen to Rosie. If any of them do, you will deal with each one as you come to it, with love and humour as you always do.
    Oh, and there's nothing like a nomination to make you doubt yourself... onwards and upwards. To Legoland and beyond :))
    Love from us all x

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    1. Thank you H! Really looking forward to Legoland - more so than the kids now I think :) x

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  6. Hi Tom
    I love your blog, and Rosie is a gorgeous little girl.
    You have the same fears for Rosie as you would for any other child; it's just that those fears are magnified for a little one who needs extra help.
    I'm the sister of a late and wonderful Down's person and I know that my parents had very similar worries which you've expressed.
    I meant to send you a link to a booklet we produced when my father and I wrote an article for a magazine to which he contributes - we extended it when my sister died. It may help you and I hope that it does.
    The online booklet needs revision as there are gaps - just scroll to the picture and you're at the end.
    http://www.fellowshipofauthorsandartists.com/profiles/williamstewart/sunflower.pdf
    With regards to you and your family and a big hug for your precious daughter
    Mary

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    1. Thank you Mary. What a lovely booklet, some special words in there. Thank you so much for taking the time to share and to comment. x

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  7. Ah yes, the what if's ... I've had many of those, and many similar to your list (I might be a bit of a control freak, and like to think I can be in charge), especially when my son was much younger. He's 27 now, and the best, very best, thing I have learned from him - there have been many lessons, and they are still coming - has been to take one day at a time. It sounds a bit cliched, but we controlists need such lessons, and they come from the most unexpected quarters.Of course almost everything I've ever worried about has not happened, and Declan has taken many things in his stride, with grace and aplomb that I never imagined he'd be able to muster. Here are a couple of the 'what if's' I've burdened him with:

    What if I can't love him enough to be the mother he deserves?
    By the time we took him home at 5 days old to see how we would 'cope' his grip on our hearts was like a vice. We had the great teacher, right there in our arms. He seemed to know. We were his.

    What if the effects of my chemotherapy (for breast cancer, when he was 11) scared the living daylights out of him, and he just couldn't understand it?
    The day he came from school to find I had shaved my head because my hair was falling out in clumps and I'd found some in the fridge (!), he hugged me and said "never mind darling, the fairies have taken your hair away for now, and they will bring it back" - and they did!

    What if he persists in wanting to drive and just can't manage it, and has to live with bitter disappointment in himself? And even worse, what if he manages to pass the bloody test and they give him a licence ??
    By the time he was old enough to drive he'd learned to catch buses and trains, and realised that driving was really hard. He did get impatient when his younger sister took her time to get her licence - he wanted a personal driver and had her marked for the job. They now have a good deal - she gets to borrow my car as long as she takes him where he needs to go when I need her to give him a lift. He is not above calling on his mobile to request a pick-up.

    What if he minds having Down syndrome as much as I mind him having it (or more)?
    As soon as he could articulate it, he said quite clearly, 'it's just me, Mum' and he is one of the most comfortable-in-his-own-skin people I have ever known. So who am I to mind? For a long, long time, 'he is my son, BUT he has Down syndrome' has been 'he is my son AND he has Down syndrome' - I can't pinpoint when that transition occurred, but took time, and I think it was the mind-set that made all the other 'what ifs' melt away.

    The only 'what if' that troubles me now, and then only occasionally, is the thought of 'what if we hadn't had him? what if we'd missed out?' It doesn't bear thinking about.

    This might not be your experience, of course, but I hope you find yourself in something like this easy head-space in time. Go easy on yourself - Rosie will.

    Jill - a good enough mother, to a son I could not imagine not having, just as he is.

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    1. Jill, If I knew you I'd be sending you flowers. Thank you so much, what a truly moving and inspirational comment, I'm slightly lost for words to be honest... just, well THANK YOU! x

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  8. Hi Tom,
    Congratulations on being a finalist on the MADS2013!
    I'm a mother of four children including my late son who had DS. I agree with Mary there.These what ifs are the same for every child and I do remember the extra protective, defensive, vulnerable phase I went through with my son even though he lived a very short life. I can tell you that I worried about things may or may not happen to my son instead of enjoying his presence and living life and noticing the small things without comparing to other kids. I wish I could bring him back just for a second to kiss him on his cheeks. So enjoy your beautiful baby girl. Take care. Uuganaa

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    1. Thank you so much for sharing Uuganaa, I can't begin to imagine how it feels to lose a child and it certainly puts things into perspective some-what. Take care.x

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  9. I understand all your concerns I have a beautiful 2 1/5 yr old with ds :) she is one of twins and always wondered how she would cope seeing her sister up and running well stubborn katie did just that at 2 years old :) her speech is delayed so we're working on that but as woth all children. .. they do things at their own pace.... enjoy your gorgeous daughter you will soon be running after her :)

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  10. I totally understand your concerns I have a beautiful 2half yr old daugher with ds shes one of twins and I did wonder howshe wwould feel with her sister running around... well as u know how stubborn our children are katie got up at 2 and started walking her speech is delayed but as with all children special needs or not they will do things at their own pace :) enjoy your gorgeous daughter

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  11. I worry about those things too...and none of my children are DS. It's perfectly normal and you are a good parent to thinking about those things, because it says you care. You want the best for her and that is GREAT...It becomes a problem when you let your worries and fears hold you hostage and keep you from making decisions. That is the hard part. I suspect you will be just fine and that Rosie will grow and develop when it's her time to grow and develop and you will show the world what loving such a beautiful angel is all about. You will be a wonderful example to all! You ARE a wonderful example to all! I sure appreciate you and all you do and I know your wife and boys do as well! Thank you for sharing you life with all of us! Much love from Utah!

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    1. Wonderful words as always Rosalie - Big hugs have just been packaged and are now on their way across the big pond :)

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  12. Hi Tom, I'm new to your blog... I have a brother who is 6 years old with Down Syndrome. There is 20 years difference between me and him and most people who know us view me as his third parent (a lot of responsibility, which I wonder whether I have unconsciously adopted or whether It has been imposed on me by the role I play within the family already). My mother and father were unaware they were expecting a baby let alone expecting a child with additional needs. My mum was borderline to have any tests done because she was so far gone therefore we decided not to have them carried out because of the risks. If we found out at that stage that something wasn't right we felt would only make us more anxious and consequently harm and affect the baby (of course we didn't ever think that anything would be 'wrong'). We already were debating the 'what if's' and whether we had made the right decision not finding out would this have given us more time to prepare or did we not want the reality of having to deal with the situation if it arose. We found out 3 days after Kieran was born that he had down syndrome, it was so surreal my mother going into hospital to have a baby and coming home without one as Kieran was kept in scbu for 6 weeks. We were given leaflets etc which we still haven't read or looked at, but they remain on the bedside table. My sister and I's response to the news was that 'if anyone picks on him at school we're going to beat them up.' Instantly worrying about the long term future rather than what was going to happen in the coming days/months. I remember my dad apologising to my grandma for not giving her the grandson she deserved. My sister, brother and I were disgusted and angry at his reaction and thought 'how could you say that, he is Kieran.' We certainly had not only Kieran to be protective over but we also found ourselves caring for our parents and helping them to 'grieve' for the baby that they wanted and had expectations for, which at this time all seemed unrealistic expectations. We are still in denial, shock, grief and experience all of the same 'what ifs' questions 6 years on, but not one of those 'what if's' is 'what if things were different, or what if Kieran didn't have down syndrome.' He wouldn't be Kieran and we wouldn't have shared the experiences, met new people, learnt new things if he didn't have down syndrome.
    Since Kieran was born its made me realise what unconditional love is. I'm currently at University studying a BA Hons degree in Early Childhood Studies, initially wanting to be a teacher, however at the moment I am quite happy plodding along knowing that I am finally doing something I never thought I could achieve. Kieran makes me feel anything is possible. I have attended counselling for the last 3 years and I would describe myself as a complete perfectionist and place very high expectations on everything I do. This can work very positively at times however working in the field of children and families it is difficult working with 'typically' developing children and living a very different life at home (ever heard of the expression doctors are the worse patients, well ignorance would definitely be bliss). Constantly im having to put my 'professional' knowledge which is gained from study and work experience to the back of my mind in order to support Kieran and my parents the best I can, anxiety and fear takes over my everyday life. I am still learning to take each day as it comes (very hard in a society where accountability and progress is forced upon us all the time), I have found this is when I can support Kieran the most effectively and in the right ways.

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  13. The future is scary regardless if you have a child or not or have a child with additional needs or a "typical" child "uncertainty is our only certainty" But to keep on supporting Rosie the best think about.... 'what if I spend all my time worrying about the future that I forget about the present or even the past." I am so glad that we took video recordings of Kierans own Milestones (not the one's you read about in baby books that appear to be the most important). Even now I feel guilty that we don't take the time often enough to look back at how far not only he has come but how far we have all come and all of those 'what if' questions we had disappear out the window. I went on a down syndrome awareness course when Kieran was almost 3, I listened to the educational psychologist explain that the 'gap' will increase as a child with down syndrome gets older, I convinced myself that she was wrong thinking how can it get much bigger at 3 years old he isn't walking, talking, toileting when all his peers seem to be engaging in conversations getting their message heard, riding their bikes, acting out role play scenarios. We introduced Makaton signing and Kieran has come on with his personality and friendships and now attends Mainstream school. Everyday I drop him off I think to the fears I had about school and the 'playground', feeling guilty that I am abandoning him and if he gets picked on he doesn't have a voice or the ability to walk off to avoid the situation and the impact that has on his confidence. I constantly worry whether the adults that work with him truly understand his condition but most importantly him and do they have the knowledge or experience to support him to develop all of the life skills he will need. Accepting that there is no such thing as 'the good/bad parent, the typical child' is the first step in truly enjoying the life you have. Its hard to sum up in one blog our journey in the last 6 years but I will be happy to speak again. Look back at your what if questions and change them to more positive affirmations or at least ones you have the ability to plan/control?
    1 - You cant change other people particularly people you just see in the street but you can choose the way you react to a situation. Be confident in what you know and show off to people the things Rosie can do. People these days claim children are growing up too fast, we're lucky that we get to cherish those special moments longer and at each stage rather than thinking about the next bit they need to move onto. Ironically we would love nothing more than for them to grow up to be independent.
    2 - When Rosie learns to walk, how are we going to catch up with her? What places are we going to visit? We were unable to get a mobility car for Kieran until he was 3 which seemed ridiculous because he just started walking as soon as we had access to one.
    3 - Rosie may not get invited to every party, but she will have her own parties for her to choose who is special to her and who she wants to invite. I still now judge how many friends ive got by how many cards I receive (setting myself up to fail or what).Children at Kierans school argue for him to choose them as his friends and is one of the first to be invited to others houses.
    Now try the rest on your own with your family, actually maybe sticking to a few will make them more realistic.
    Hope to speak again soon, Hayley

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    1. Thank you Hayley great advice and great tips on how to get things back into perspective. Thank you so much for taking the time to write this wonderful comment.x

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  14. I think we all suffer from the 'What If' syndrome Tom. I remember being overwhelmed by a thousand what ifs the night after Daniel was born. Unable to sleep I phoned the hospital to ask how Cath and Daniel were. It was 3am and the nurse in charge told me they were both asleep. She asked me if I was alright and I confessed I wasn't. I told her about the 'what if worries' I was having about Daniel (he was only 24 hours old for goodness sake). One by one she addressed each of them. What if he can't do this, what if he can't do that...She reassured me he would do ALL the things I was listing but in his own time. Then she asked me why I was putting so much pressure of expectation on my new baby. I hadn't done that with my other children when they were born she reminded me. That's because I just assumed they will reach all of life's milestones. Of course there's no 100% guarantee that they will achieve ALL the hopes and dreams we have for them but we will deal with those disappointments when they happen. The difference with Daniel was that I was anticipating them in advance. Yes there will be hurdles in Daniel's life, she told me, but we would get over them as and when they happen and cope better than I could imagine. Reassured I thanked her and went into a deep and peaceful sleep. It's natural to worry about your children, it's called being a parent, but the What Ifs are a waste of time and energy and will all be swept aside by the 'I wish I hadn't worried abouts...'

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    1. Thanks so much. As always your words offer great support. Really looking forward to meeting up again soon.

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  15. My comments will echo some of the others in that we have What If's for all of our kids.
    Parenting is a process, I think we learn so much more from our kids than they learn from us. Our oldest (just declared where she will go to college!) 18 has been has given us more What If's than Dev our 16yr with DS. Where is she, is she safe, are her friends doing _____, will she drop out, will she get _____,
    Doing drugs, staying out past curfew, breaking the law, these big issues are not on my worry list for Dev.
    Your other kids will be kinder, more accepting people too, I bet you already are as well.
    Dev will be a productive, happy part of society, as we hope/work to make sure all of our kids will be.
    Are there jerks in school/life? YES. I grew up with them, I would bet you did too, but you did not become a jerk, and your kids won't either.
    I think our kids are the lucky ones in school. They have us, family friends, friends, teachers, counselors, coaches, therapists all looking out for them. Our youngest--10yr, great kids-athletic, smart and good-looking is the one that gets bullied at his new school... but know one looks out for that...
    Rosie's future is wonderfully bright, maybe not easy (none really are), but bright!

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    1. Some very true words in there Sue thank you so much for your thoughts they mean a lot.

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    2. Just read your 'What If...' and the wonderful comments.

      I don't know what it's like to have a little girl with Downs but I've been a Paediatric nurse and worked as a Learning support in school and I'm a mum of three 'Grown up ' children. I can relate to some of your 'What ifs' and the 'wobbly times' that come with parenting.

      What I do know is that I really enjoy reading your wonderful inspiring and beautifully written Blog and love the pictures of Rosie, especially her 'Friday' set everyone up in a great mood for the weekend ones! I voted for your blog of course! My vote wasn't because it gives such a great and positive insight into Down's Syndrome(which it does of course) or because the lovely pictures of Rosie who is just gorgous always make me smile( which they do!). My vote was because your Blogshares the ups and downs and the 'What ifs' of a life completely surrounded and held in the love of a family. We don't get to read enough , or see enough about that in today's world.
      Rosie is a beautiful little girl really cute and that's the way she 'looks' but its her eyes and her gorgeous smile that always makes me smile and I 'm guessing many others too.
      The look in her eyes and her smile are there because of the love and support of a wonderful family and there's no way they would be there otherwise. Your Blog is a great flagship for what's important, you write about it and the pictures of Rosie show it.
      Good luck with the competition..you really deserve to win, but I think your Blog's a winner anyway.
      It's hard but try not to worry about the future too much and too often and maybe when you all do stop and ask what Rosie's own 'what If' would be....'What if I'd been born into a different family , not surrounded and held by the love and care of such a brilliant , devoted mum and dad, two super brothers and all my extended family?'
      Thank you again for your wonderful sharing and I'm sure that for your wonderful little girl , the Futures Rosie x

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    3. Wow Sally that really is so kind. I am inspired also by the many people that TFR seems to touch, the world really is a wonderful place if only we could all focus more on the positives. x

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  16. I think Rosie is so lucky that you love her so much, and you're so lucky you have her to love and teach you so much more about life than you could ever have hoped to learn without her.
    I do the 'what ifs' all too often myself. I've been seriously considering homeschool for Gemma, and not just because I want to shelter her from the hurtful comments of other kids, but because I also want to make sure she gets educated to her full potential. I always have to stop myself and remember that it's okay to think about tomorrow...but don't waste too much of today...it won't come around again.
    Best to all of you! xo

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    1. Very wise words indeed: "but don't waste too much of today...it won't come around again."
      Thank for you comment and good luck to you and your daughter Gemma.x

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  17. Although it's never nice to hear that someone else is having few "wobbly" days as you put it, it is strangely comforting to know that you are not the only one who from time to time experiences these "wobbles". The comments from others tell us what we already know, that our worries are unnecessary, but from time to time we need to voice them.
    Thank you so much for your honesty and all you do.
    Been following your blog for a while, and hadn't realised until I saw the article in the Wilmslow Express that you were local.
    Looking forward to reading some more when the wobbles have passed.

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    1. Hi Yasmin, small world hey! Thank you for your comment, I agree the wobbles need to be voiced in order to put them into perspective, it's also (as you say) good to know you're thoughts aren't unique to yourself in terms of the 'what if's'. Take care and maybe bump into one day :) x

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  18. Thank you for sharing your thoughts...my heart aches for you and I think Rosie is blessed to have a father like you who loves her so much and like any parent wants the very best out of life for their child. Not sure if you have God in your life but He tells us to never fear as fear comes from a bad place. Always trust and believe that you and your precious Rosie will come first in line with God's protection. Love The Hendriks Family.

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    1. That's very kind and thank you so much for commenting. :)

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  19. Blimey, I have just found this blog and I'm just blown away with the honesty, warmth and love. My little lady, my life and my love, made me the proudest daddy in the world when she arrived 8 weeks ago. She is the most beautiful girl in the world. She has DS, AVSD and tummy problems (which she bravely had surgery for a day after she was born). Our little lady is now facing surgery in a few months to fix her brave little heart. As a new dad I am so proud of how she just gets on with things and seems to take everything in her stride, she's amazing. Reading the "what ifs?" was like reading my own thoughts. So many "what ifs?", currently I can't bear the thought of someone being horrible to my little angel after she's courageously dealt with so much, but the "what ifs?" seem to change, come and go, then come back again. Thank you so much for this blog, it's comforting to know that there are like minded, honest and caring people who can understand what our little family is going through. Thank you, ProudDad x

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    1. Hi there 'ProudDad' funnily enough reading your comment was also like hearing myself. Thanks so much for taking the time to comment, your little girl sounds perfect. Rosie also had open heart surgery at 6 months old for a complete AVSD and as difficult as it was to endure as a parent it was all very straight forward. I have written about my experience of the surgery should you wish to read it (you may not be ready though so don't feel you have to) I should warn you that there are also quite graphic pictures post surgery. You can read it here: http://www.thefuturesrosie.com/p/rosies-surgery.html

      Your comment "currently I can't bear the thought of someone being horrible to my little angel after she's courageously dealt with so much" echos so true with me as well, thats exactly how I feel about Rosie, she is my hero.

      Good luck with everything and continue to enjoy your bundle of joy.

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  20. And that, there, is exactly the reason why she's going to be fine. Your adorable girl will be loved for who she is, irrespective of what challenges face her. Parenting is sometimes a long long chain of worries that can drag you down, and those worries almost always turn out to be not as problematic in reality as they are in your head late at night. I know it's hard, but try to enjoy the now. And only write when you feel like it, no-one judges you for that - we've all been there :)

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    1. Thank you for your words and the advice about only writing when you feel like it. It's great to hear that and especially from such an established blogger :) means a lot – thanks. x

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  21. Hi I'm so glad to find this blog, have been reading it with tears in my eyes, Rosie is such a pretty little girl you must be so proud.
    Me and my husband have a new born well she's 2 weeks old now and still in neo-natal we found out about 4 hours after she was born that she has downs, we didn't know so we're shocked and tearful but she's our baby and is amazing. Reading all about Rosie really has helped me and reading your what if's and that's what we've been thinking, thank you for sharing.x x

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    1. Thank you so much for commenting. Congratulations on the birth of your daughter - I bet she's beautiful. I can't tell you how much it means to me to know it has helped you reading about Rosie. Thank you once again you have really lifted my spirits and I wish you, your husband and little girl the very best for the future.xx

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  22. Beautiful girl, great blog and pictures.
    As a mother of 29 years old DS woman I say go with the flow. Enjoy the good times and tackle the bad times. Reading your blog I know you can. Bad thing may not even happen. I myself worried especially when there where changes, new school or new neighborhood. I didn´t trust people to treat my girl right. But that´s life some do and some don´t. It´s good to plan what you can and be ready to change direction if you need. In a 29 years things have changed to the better people know more about DS ,maybe through the Internet and great bloggers like you. Yesterday I read a blog from young DS mother in Iceland, talking about how parents should educate their children about DS at home and be aware of how to use the word mongolite, retard and so on. One of her child is defending his little sister at school and dosn´t understand why the kids use the words like they do. She ends saying we are just a normal family , with a lot of feelings and love and want people to respect that. When I see, read or hear how DS parents talk about their children I often think how smart these kids are in choosing the right parents. Parents who love them no matter what and are proud of them, - that is my experience. Best luck to you -Ingibj√∂rg

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  23. Thank you so much for being so honest. I wish I had come across this a little while ago as I, too have been feeling wobbly recently. Our beautiful Jasmine is now nearly 18 months old and absolutely adorable. But reality sometimes hits me hard. I have started reading some of your blog and it really encourages me. Thank you so much for what you write and I look forward to reading more about Rosie. She is absolutely gorgeous. Julie Nightingale

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    1. Thank you for contacting me and taking the time to comment so kindly about my blog. It means a lot to know it helps others too - we're all in it together I need you guys too sometimes :) Thank you.x

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