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Struggling to come to terms with son's diagnosis

missy2missy2 Member Posts: 9
edited August 2016 in Parents and carers
We discovered Seb has severe dystonic cp in January and I am still struggling to come to terms with it some days I good others I feel like why?.. I have lost my so allied best friend ? Why cause my son has cp and she can't deal with it .. Can anyone help me understand if these feelings get better understanding of am I normal ??? Xxx
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Replies

  • mollymoobarnesmollymoobarnes Member Posts: 107
    Hi Missy

    You are completely normal! My son was diagnosed with quad spastic CP in April last year at the age of 11 months and I still have days (quite frequently) where I feel angry and ask 'why my son?'. It DOES get easier though - time does start to heal and you 'get used' to it a bit - you'll find the things that help and the things that don't, you'll get a routine together - groups to attend, physio, speech therapy, OT etc etc. Your days will be full and busy and you'll see him progress - slowly. Take each day as it comes and don't look at the big picture too much as it can be quite overwhelming.

    Your friend has let you down by not being able to suppirt you but she may need a bit of time to get her head around it. Sometimes people just dont know what to say to help so they withdraw but you might just need to remind her that you don't need her to 'say' anything - just be be there for you and be a friend, just like she always was. If she cant do that for you then she was never the friend that you thought she was. My friends all have able-bodied kids around the same age as Tom and his twin sister Iris - they have been fantastic and stood with me shouder to shoulder to face all the ups and downs of this rollercoaster ride I am on but I think to begin with even they didnt know what to say and I had to say to them what I wanted from them - plenty of cups of tea and cuddles, an ear to listen to me while I tried to make sense of what was happening and an occasional shoulder to cry on.

    Just talk to us on here when you want to share stuff that only CP mums can understand - we are here for you.

    Maria xxx
  • mrsfoxmrsfox Member Posts: 76
    Cannot stress how important it is to obtain a SUI report following a problem before/during & after birth where you have a gut feeling something went wrong and/or you feel that questions you have asked are not being addressed - why has my baby been diagnosed with CP what went wrong?

    (I have just received my SUI report and I am shocked/devistated at the catalogue of errors made by various departments/health care professionals and staff - The SUI report has timed events of what whent wrong and all I can do now is pass this onto the professionals)

    Please follow the below link and summary - I'm not saying it's for everyone, but the report will draw a line around a lot of unanswered question surrounding you/baby(s) care whilst "in the care" of the Hospital.

    http://www.london.nhs.uk/webfiles/Corporate/Serious incidents/NHSL S...
    Serious incidents in healthcare are uncommon but when they occur the National Health Service
    (NHS) has a responsibility to ensure there are systematic measures in place for safeguarding
    people, property, NHS resources and reputation. This includes responsibility to learn from these
    incidents to minimise the risk of them happening again1.NHS London
  • barneypupbarneypup Member Posts: 17
    My daughter is 11 and i'm still struggling with her disabilities.. but not as much as she is.

    You have been delt a hell of a blow and it will never be fixed because in order to fix things we would require a time machine.

    If you weren't confused, angry, grieveing and devastated then you wouldn't be normal.. I'm presuming your wife is struggling.. you will take it in turns to be the strong one.. its your turn now but she will astonish you with her strength once shes recovered from her shock and initial devastation..a mothers love overcomes all barriers.. I was in her position and remember feeling like i'd let everyone down.. Its ridiculous but true..

    Stay strong and remember it does get better because you come to terms with your little family.. it is what it is.. our challenge is to make it the happiest family we can.. not because of whats happened but despite whats happened..
  • missy2missy2 Member Posts: 9
    Hi
    Thank you so much you have said the one thing i have been thinkinh but not said .i let him down i should have protected him and i didnt .that the hardest to deal with ,Sebs dad is strong and silent while i blub and shout not all the time they are getting less .We are going abroad next week everyone thinks we are mad with all sebs equipment but he is part of us and goes where we go so greece here we come lol .That is a fantastic way of looking at things be happy seb is a happy chappy and so is his brother so we need to be to.x
    xx
  • missy2missy2 Member Posts: 9
    Hi Maria
    Thank you so much for your post sorry only now replying had to get my head together .I am glad i am normal there is not much support out there for us my health visitor thinks it too soo to talk to people who have been through it . I still see my friend but it is hard.The people who have children the same age as seb have disapered feel like shouting its not contagious lol .I have a found new friends who have always been there but have now come into their own .How are you?xx

    i get so fustrated with the doctors they seem to take forever to do anything and keep pointing out the bad things even though seb has exceeded their expections already as they keep sayig his mri is so servere .We know what he has and dont need to hear the bad points all the time .tell us how well he is or how fab he looking (rant over sorry ~).Do you have doctors like this ?
  • missy2missy2 Member Posts: 9
    Hi Thank you for all the information but sebs occured at 30 weeks and was born at term there is no reason for seb it just happened as hard as that is for me to get my head around .Its nooones fault and nooone is to blame believe me if they were i would be with you 100% .I am so sorry that the system let you down so badly .How are you doing ? xxx .
  • mollymoobarnesmollymoobarnes Member Posts: 107
    Hi hon, I also feel like I let \tom down - that's something I think we all feel at times - after all, we parents are meant to make the bad stuff go away, except this time we can't.

    Tom's brain injury (PVL) happened in the womb (they think) but prior to his birth so in the early days I felt that I had caused it, even though it obviously wasnt anything I actually did (I didn't drink or smoke in pregnancy, or do anything silly). It just happened, but I felt like my body failed him. These feelings are irrational though - we have done nothing to let our kids down - we just are left so shocked and there is no way of undoing it for our precious children.

    You MUST live your life as you want - get out there with him and show him the world, do all the things you would have done. We took Tom's huge walker on our camping hols - it took more room than the rest of the stuff put together! But I wanted him to get about with his sisters and enjoy some freedom. We flew the year before last and I was allowed a whole MASSIVE holdall of extra stuff by the airline because Tom has a disability so its worth checking before you go. I even took a baby hammock with us sso he could chill in the garden at the villa (he wasn't able to sit unaided at that stage although he can a bit more now).

    I definately understand what you are saying about your friends - even if your friends are all supportive its still hard. You have a child who finds things far harder than any of their kids ever will. You will see their kids progress and see your child struggle. But my son has shown more bravery, fortitude, humour, determination and strength than any of theirs - he's a little dude and I am so incredibly proud of him. I think everyone can see how hard he has to work for stuff - I think those who know him well are as amazed by him as I am. Celebrate the little things and don't get sucked into comparing him with others his age. Tom's twin sister is doing lots and lots of things that Tom can't do (and to be honest, may never do) but she doesn't have to work for stuff like he does. He needs to work hard to get his hands to open whereas she can walk in plastic high heels! I love them both equally, from the bottom of my heart and am hugely proud of both of them but if the shoe was on the other foot and Iris was the one with CP I don't think she would be coping as well as he does.

    Don't take ay notice of the doom and gloom the doctors come out with - they have to tell you this stuff but ultimately you know far more than they can tell you. You live with him and care for him - there is nothing you don't know. Tom has quad CP. They said he would propably not walk (maybe not, but witth his hands held really well), that he might be blind and deaf (he's neither), that he might develop epilepsy (not as yet), might plateau intellectually (no sign of this either). At the 2 year development check he was marked as being between a 2-3 year year old in terms of use of language and understanding, but as a 9-12 month baby in his physical skills. At the age of 2 thats hard to hear but it's just trying to make a 'not normal' child fit a 'normal child' test.

    M xxx


  • barneypupbarneypup Member Posts: 17
    Wow , good for you.. why shouldn't you go abroad.. we have taken Alice around the world over the years.. mostly on cruises, which is much easier by the way.

    You should be really proud of yourself, you seem to have taken the plunge and made the decision to be happy. I did the same thing.. I believe its a choice you make..

    I went on to have two more healthy children and believe that i can be a good parent to them by being happy..

    I don't always feel it but they didn't ask for a miserable mum.. most of my friends have kids with no disabilities.. they don;t feel sorry for me because I won't allow it.

    . I'm very lucky to have my daughter and when i feel sad, I remind myself that having her as we had hoped was never an option..We are blessed with her how she is as the other option was not having her at all..

    It took a while but i have stopped comparing her to others her age,The sooner you can do this, the better for you..

    I met a girl in the neonatal unit who had twin boys.. we became friends and i wasted alot of time envying her when she went home with two healthy babies and wondered why me.... she died last week aged 35 of a brain tumour....makes you think... Have a wonderful holiday.... Fish insurance are great xx
  • stephgreenstephgreen Member Posts: 28
    Hi there my son also has dystonic cp. How old is he? How is he getting on physically? It's so hard to come to terms with but I found it does get easier, I'll never totally be ok with the situation but I'm glad we have jack just scared he is gonna be unhappy in the future. Jack is 18months and so determined and very bright and alert just has trouble with his movement. That's terrible your friend ditched you it's the time you most need your mates. I hope to hear from you soon. How old was he when you found out/noticed something wasn't right. Sorry for all the questions !!!!! Steph x
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