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My 15 month old was diagnosed with CP before Christmas!

Rebecca90Rebecca90 Posts: 5Member Listener
Hi, my 15 month old daughter (one of twins) was diagnosed with right side hemiplegia evolving cerebral palsy back in November 2018. I'm not sure I'm still over the 'shock' and that I'm coming to terms with her diagnosis. I had a tough pregnancy with said daughter stopping growing (which is where they believe she may have had her stroke which may have caused her trauma).

I know this might sound awful but I compare her to her twin sister so much and I know I shouldn't but it really upsets me when I don't see her doing what her sister does. They are two completely different babies but it's hard watching one almost walking and the other not even being able to crawl. 

I feel like I'm letting her down. The little things we take for granted I cherish so much with her. When she claps her hands with her fingers slightly open I feel like I could burst with happiness. When she sits up without help or when she picks up her toys. She's doing so well, but it still upsets me and I feel awful for getting upset. She's the happiest baby girl in the world so I know most of the time it doesn't bother her. I'm told 'she's fine' by family but I guess no one really understands the feelings I'm dealing with unless they have gone through the same. 

(I've just never expressed my feelings to anyone because I feel like I have to be brave and act like everything is okay)

😞

Replies

  • Adrian_ScopeAdrian_Scope Posts: 1,843Administrator Scope community team
    edited April 17
    Welcome to the community @Rebecca90, I'm so glad you joined and felt able to share with us.
    A new diagnosis is a scary experience for anyone, on one hand it means your child can now receive help and treatment but on the other, it raises more questions for you and your family.

    Comparing your twins is completely understandable. We all know we shouldn't, but as parents it's only natural to make comparisons and in your situation, with two children at the same age you've got the direct comparison. Two other members (@cerivernon1 and @JennyW) have posted about their similar-aged children being recently diagnosed too and may be able to relate on a more personal level.

    I feel like you might benefit from a new (free!) service Scope now offer called Navigate so I'm tagging in @Kate_Scope who is part of the Navigate team and I'm sure our Cerebal Palsy specialist @Richard_Scope will be along at some point to say hello too. 

    Keep in touch and let us know how you're getting on. :smile:
    Senior Community Officer
    Scope
  • Ami2301Ami2301 Posts: 4,986Community champion Disability Gamechanger
    Hi @Rebecca90 welcome to the community! Thank you for sharing and I am sorry to hear how you are feeling.

    You might be interested in learning more about our new service, Navigate - they provide support to families with disabled children during the early stages of diagnosis. They also offer 6 sessions where you can talk about how you feel and most importantly, you will not be judged.

    Other useful information is provided below
    Let us know if we can help you further :)
    You're a fighter. Look at everything you've overcome. Don't give up now!
  • Beverley_ScopeBeverley_Scope Posts: 73Navigate Pioneering
    Hi @Rebecca90,

    I'm so sorry to hear that you are feeling as you do.  It is completely understandable and you should not feel like your letting anyone down.  It is okay to feel scared and worried and you should be able to express your feelings.

    I am one of the parent advisers on the Navigate team and feel sure that we could support you, and give you someone to talk to, which is so important.

    There is an online referral form on this site  https://www.scope.org.uk/family-services/navigate or you could call us directly on 0808 801 1510.  We are here till 8pm Monday to Fridays and also 9-12pm on a Saturday morning.

    I hope that you feel able to let us help you.  Picking up the phone is sometimes the hardest thing.

    Take care

    Beverley
  • Kate_ScopeKate_Scope Posts: 68Navigate Pioneering
    hi, @Rebecca90 my name is Kate and while Bev my colleague has advised you of the navigate service, I want to add some things from personal experience. My eldest daughter is Eve she has cerebral palsy and epilepsy, I remember sitting in children's parties (Eve was the eldest child out of my group of friends with children) they were all running around and playing together, it used to make me so upset, when a parent said thier child was walking i was so happy for them, but underlying was this immense pain and questions- will Eve walk? Will she go to the mainstream? how will she be affected as she ages? what will she be able to do? what won't she be able to do? 

    The unknown is the biggest fear I think at the start of this journey. 

    What I am trying to say is the feelings you are having are totally normal! Eve is 18 now and when everyone was in bed when she was young I would trawl the internet for hours, looking for answers and of course kindred spirits, I joined the Scope forum and met so many parents- like me! I am still friends with many of them, we meet up now and again too. 

    Take a day at a time, be kind to yourself- cut yourself a bit of slack when you do feel like this. 
    what would you say to a friend of yours going through the same thing?- "don't beat yourself up", "it is normal to feel like this", " you are doing so well...." 

    Try and be Kind to yourself 

    Good luck 

    Kate 


  • Sarac_ScopeSarac_Scope Posts: 28Navigate Connected
    Hi @Rebecca90

    Welcome to the community.  As my colleague @Kate_Scope has said, the range of emotions you are feeling at the moment is perfectly normal.  As parents you cant help but compare your children on their milestones, especially as you are a mum of twins.

    I just wanted to let you know, I have right sided mild cerebral palsy (hemiplegia) after a stroke at birth and now 42 years of age.  My Mum fought for everything for me as a child and always let me find ways of doing almost all the things my younger sister did.  She understood over time that our achievements were going to be different, but this is the same for any sibling group.  We are all unique.
    I attended mainstream school and although it was a hard journey, I am now married with a 15 yr old son and recently started working at Scope as a parent adviser.

    Your daughter will find her own way in time and surprise you in many ways.  

    Best Wishes

    Sara
  • Rebecca90Rebecca90 Posts: 5Member Listener
    Thank you all so much for your comments. Its been lovely to read them all.

    Most days I feel fine and just glad she's here with me (I was given a 20% chance of survival for both twins so I feel extremely lucky) I guess it's just learning to come to terms with her disability and make the most out of what she can do and not to dwell on what she can't do. She's extremely bright and lights up every room She enters. 

    You feel so alone in a world full of people sometimes and it's just nice to know there are people out there who can relate because whilst we can say we are fine, inside we know there are worries. Speaking to people in similar situations can be a real weight off my shoulders.

    Again, thank you all ☺
  • April2018momApril2018mom Posts: 691Member Pioneering
    Hello there

    There’s no wrong or right way to feel bad. I’m also a homeschooling mom of twins one boy one girl. My 2 year old DS was prenatally diagnosed with Spina Bifida before birth and then after birth I learned more about his clubbed feet as well.
    Diagnosis day was one of the most difficult parts that make up the entire journey. During the first year of being a mom I kept a diary as a coping mechanism. I was at a routine scan during June of 2016 when they found the hole on his back and said that his feet looked strange too. I don’t want to be negative or mean but constantly focusing on the delays will drive you crazy. My outlook on life has changed as a result. 
  • Rebecca90Rebecca90 Posts: 5Member Listener
    Hello there

    There’s no wrong or right way to feel bad. I’m also a homeschooling mom of twins one boy one girl. My 2 year old DS was prenatally diagnosed with Spina Bifida before birth and then after birth I learned more about his clubbed feet as well.
    Diagnosis day was one of the most difficult parts that make up the entire journey. During the first year of being a mom I kept a diary as a coping mechanism. I was at a routine scan during June of 2016 when they found the hole on his back and said that his feet looked strange too. I don’t want to be negative or mean but constantly focusing on the delays will drive you crazy. My outlook on life has changed as a result. 
    Ok try not to focus on what she isn't doing and to focus on what she can do. Can be hard at times but now that she has had her diagnosis my outlook has changed too. 

    I'm not fully over the shock still but I have her first proper appointment this may which I have waited what feels like so long for. I'm glad it's nearly here because I've so many questions I need answering. Maybe that will put my mind at rest 
  • Richard_ScopeRichard_Scope Posts: 1,481Administrator Scope community team
    Hi @Rebecca90 ;
    Good to talk to you. As my colleagues have said there is no set way that you should feel. is the appointment in May with a Paediatrician? You will feel better once you have had the chance to ask your questions face to face. We are here to support you and to listen, so remember you are not alone :)
    Scope
    Specialist Information Officer - Cerebral Palsy
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