FIND US ON FIREFLY GARDEN

We’re over on Firefly Garden again today. Click on the link and join us there: http://community.fireflyfriends.com/blog/article/why-i-never-grieved-over-my-childs-diagnosis

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10 thoughts on “FIND US ON FIREFLY GARDEN

  1. Ed says:

    Just read this “why I never grieved over my child’s diagnosis” after being sent the details of this blog by my hairdresser, following a conversation about my 25 weeks of pregnancy. We were diagnosed as high risk 1in5 for our baby having downs syndrome and yes she does, she was diagnosed by amniocentesis. There was no question for us about continuing our pregnancy as we have a daughter but have had two miscarriages as well. This blog has helped so much especially this post. We are still quite frightened by it all as our daughter potentially has oesophageal atresia but this blog has given me hope. I want to refer back to it when we go for the fetal medicines scans at the UHNS and the fears return at these harder times. Nice to know we are not alone and there are folk out there who are postive and an inspiration. Thank you.

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    • Thank you for taking the time to let me know what you thought about my blog. It makes me so happy to know that you found it helpful. You are exactly the kind of reader who I had in my mind when I started the blog – someone like I was seven years ago – someone who had just been given a diagnosis, and was afraid that their nice, normal life was about to disappear over the horizon with its bum on fire. I wanted not just medical, factual information, but reassurance about what day-to-day life might be like. I’m not going to lie and say it will be a breeze, because it can be hard if your child is ill – but it is amazing how you adjust, how you incorporate the challenges you face into everyday life, and how resourceful you become in meeting them. Your life may be different from your friend’s lives, but it will still be a good life, a great life, even. Ours is getting better all the time. Remember, your new daughter doesn’t know any other way to ‘be’. She will learn a lot from her older sister (and her older daughter will learn from her younger sister, patience, compassion, tolerance, acceptance and more). They will find ways to have fun together. You will find ways to LIVE together, rather than just exist. You just have to do some things a little differently, that’s all. A lady once said to me, “the scary times, when they are little, and poorly, they DO get better.” Her boy was much more ill than my Freddie when he was little, but he is doing great now – he’s well, he goes off on holiday with school, he does the reading sometimes in church, just like the other kids. You will become part of a very special, positive, can-do community. Welcome, and congratulations on your soon-to-be-born daughter (does she have a name yet?). Kerry x

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  2. Ed says:

    Thank you for your reply. We like the name Chloe so we are pretty sure that’s what we will name her. ๐Ÿ™‚
    It is fear of like you say “normal life” not being possible and fear of coping and the unknown. We are going through so many highs and lows with allthe scans, so her heart appears ok -phew, but she might have the atresia – oh no not good. I like your blog as it is honest and we know it will not be easy but I like it when you put it that our daughter will only know this way to “be”. My daughter is excited by the prospect of a sister to look after but understands more than we give her credit for -she told us she knew baby sister was “a bit poorly”. This gives me hope and to know she may probably deal with it better than we will initially!
    I would like to keep in touch if that is ok and will follow your blog. So pleased I told my hairdresser!!! I have found a great and honest blog. Thank you again.

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    • Please do keep in touch – I would like that. Your hairdresser is Angela Mee, I believe, is that right? If so, she is mine too – and one of the few people I confided in before Freddie was born. I have, as you may have gathered, two other children. Their relationship with their little brother is quite wonderful – and it’s a two-way street. They all benefit. I must admit that the atresia is something I have no experience of – is it a narrowing of the oesophagus? I must admit we have been lucky so far with Freddie’s health. But I know of other families whose children have had more significant challenges than we have, and somehow they all seem to get through the tough things and still enjoy the good times, and achieve things. If you are local to North Staffs I should tell you about the Peter Pan Centre. I’ll admit now, I’m a Trustee, but it’s a voluntary position, I’m not on commission or anything. My boy went there – it’s specifically for children with special needs. It’s not daycare, most children get one two-hour session per week, where they do activities that are targeted and focussed towards helping them with their development. We take children from birth to five, even if they attend a mainstream nursery too (my boy did), and they liaise with other professionals involved with your child. They also support families, helping them to access all the services they need. It’s something you might want to consider when you’re ready, but there’s no rush – it’s just one source of help out there that the professionals might well mention to you in due course. No doubt you have lots of worries and questions at the moment, and are perhaps feeling all at sea, which is only to be expected (it’s how I was). The only thing I can tell you for sure is that Chloe will be your beautiful baby, just as much as your elder daughter was, and is. The best thing for any child with Down’s is to be at the heart of a family where they can receive love, and give it in return. Thank you for your comments. All the best. Kerry.

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  3. Ed says:

    Hello again, yes we all go there!, Chris cuts mine and Lucy’s hair and Katie does my husband! They are really good up there and make a fuss of Lucy!
    Atresia can mean a stricture but in the term oesophageal atresia it means a gap between the stomach and oesophageal end. So the two don’t join up. It is open surgery when she is born to join things up and she will peg feed for a while too. We do not know for certain this is a problem but it was suspected. We have a scan on 4th August again.
    Thanks for the information about Peter Pan nursery. Yes we are local and is this the one on Hoon Avenue near Hempstalls lane? If so a 10 minute drive for us. When our little one is born and we are settled ee would love to know more and see if we could attend to see how we might be able to help our daughter.
    We have her name down for the same mainstream nursery as my other daughter attends Southlands nursery too for 3 days a week when I return to work. They are great and have been so supportive when we received our diagnosis. They have a SEN tutor and are more than happy to work with others who will be involved in our daughter’s care so she can attend the nursery. They have supported other children in the past who have extra needs, so the diagnosis we have does phase them at all…..this was such a relief to us as we thought no nursery would want our daughter.
    We would seek out any nusery like Peter Pan to help us to support and teach and for us to learn too.
    There is so much information out there we come across, which is great. I just want to cross the hurdle of the potential atresia and hope she will be ok.
    I will keep in touch too. Thanks again for taking the time to reply. Emma

    Liked by 1 person

    • My daughter is called Lucy, too! South lands nursery sounds fab – I have heard good things about it before. Yes, Peter Pan is the one on Hoon Avenue. Certainly they would be happy for you to look around before deciding whether you would like Chloe to go there. Of course the atresia and the thought of surgery is bound to be a major concern for you, hopefully your August scan will bring good news, or at least clarify things for you. Quite a few children at the nursery were peg fed and doing very well (I was a volunteer in the play room before becoming a trustee). I found the unknownsore scary than the facts, once I knew what was what I could somehow deal with it better.
      All the best to you (especially on Aug 4th). Kerry.

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  4. Ed says:

    Hello sorry my reply was delayed we have just returned from our holiday.
    Lucy is a great name!!! What a coincidence too!
    Yes we would love to look round Peter Pan nursery in the future as it is so local to us. We are also so lucky to have the support of Southlands where she will attend after my maternity leave ends after a year.
    We have just got Tuesday’s appointment to get through. I too hate unknowns and find them so hard to deal with. If something is unknown I find myself drawing my own conclusion which links to a worst case scenario….then things spiral and I worry. I always ask lots of questions at the appointments and sometimes I feel like I am being a pest and taking up consultant’s time. I sometimes feel like they think “why does she need to know that” but in my mind even if it is small to them it is huge to me.
    I will keep in touch and will let you know if we know more about the potential atresia on Tuesday.
    Also got loads of questions lined up for the consultant as I will be 27 weeks by then and he wants to induce me at 37 weeks….10 weeks to go so o am scared. I have a spontaneous labour last time with minimal intervention, this time it sounds like so many folk will be there for the induction they might as well start selling tickets!!! Also I know induction is a lot more interventional so I am going to Tuesday’s appointment with a set of queries.
    I will be in touch anyway and thank you for talking to me.
    Emma ๐Ÿ™‚

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  5. Hi – I hope you had a good holiday. Rest assured – it won’t be the last family you have (people tried to tell us we wouldn’t be able to go on holidY again – boy, were they wrong!). I’ll be thinking of you today. Hope your scan brings reassuring news. Fingers crossed. Kerry. Xx

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  6. Ed says:

    Morning Kerry,

    Yes we have had similar comments but we have met others at the Cheshire Downs Support group in Crewe who take their children on holiday. We believe no matter what that all children need a holiday so we will get there!

    All the Consultant scans give us a bit of a roller coaster ride through this pregnancy, but yesterday was better news as the initial oesophageal block/missing bit Mr Young thought might be present (as her stomach had been always empty in previous scans), was proved to be ok. This is because he found she had a full stomach, therefore no block or missing part. We are relieved. He cannot rule out heart problems 100%, for the moment there is a hole in the heart however it should close he hopes, if not he hopes surgery will be minor/minimal as he cannot detect major AVSD or value offset. He tells us she will have a full echo at birth anyway and heart defects will be fixable.

    We are very relieved anyway. Only 10 weeks to go as I am 27 weeks and Mr Young wants to deliver at 37 weeks. So time is flying!

    Might see you at the hairdresser sometime!
    Take care Emma ๐Ÿ™‚

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    • Hello,
      Apologies for taking so long to reply – submissions deadlines, computer glitches and a holiday have all thwarted my attempts to stay in touch with things. I managed to schedule some posts before I went away, but have had difficulty connecting to the app since.
      Hope everything is going well. I’m relieved to hear that your last scan brought reassuring news about the possible atresia. That’s one less worry for you, at least. Freddie had a small ASD when he was born – a little hole that would normally seal up at birth, but hadn’t, possibly due to his prematurity. They told us if surgery was required it would be minimal and not until school- starting age, but in the end it healed up by itself by the time he was about 18 months. I hope you’re keeping well in yourself – only a matter of weeks now. Take care . Kerry xx

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