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22 yr old mother, 2yr old daughter and CP...

lucyesmexlucyesmex Member Posts: 2
Hey guys,
I'm a 22yr old single mother whos 2yr old daughter has just been diagonsed with CP, luckly she only has it mildly. i'm new to this site and would love to hear how other parents are coping with CP, i am finding it difficult to come to terms with my daughters "disability".
Esme attends physio regularly and has an appointment soon to have an MRI scan which is very daunting! The CP has affected esmes right side of her body, she walks unaided but with a limp and holds her right arm upright more or less all the time, she has to wear piedro boots all the time (which mummy loves!!). shes a very happy, intelligent little girl and talks all the time!

It would be lovely to hear from other parents and how you're all coping. Does anybody know of any groups in the wiltshire area for parents and children to meet up for coffee and cake, i would love for esme to meet other children with CP and i would love to meet parents too.

Replies

  • alik2010alik2010 Member Posts: 7
    Hi reading this reminds me so much of me and my son....except i'm 25!
    Ethan has just had his mri scan, and he was absolutly fine, it was me who was most upset....Ethan has also been affected on his right side, was wearing boots, but he is getting a splint mon, so i'm little bit worried abput what to expect there!
    Hope things settle down for you, I got told in oct about Ethan, and the shock does wear off...Ethan is just the same little happy boy as always xxx
  • lucyesmexlucyesmex Member Posts: 2
    thankyou so much for replying!
    its great to hear from another paerent, so glad ethans MRI scan went well, what a relief for you!
    well i'm sure things will be fine on monday, i wish you all the best!! xx
  • dylansdaddylansdad Member Posts: 5
    Hello Lucy,

    I hope all is well, my situation is a little bit different as I am 24, he is 2 and I have known about Dylan's CP since he was around 5 months. Dylan's CP is slightly more severe as he cannot sit up yet and is only just starting to use his voice a little more. However, he is extremely clever and just smiles all day long and this is what you need to concentrate on.

    This is not to say that things will not get difficult and you may feel alone sometimes but if you take each day as it comes and look at how happy they are then things are easier. I try not to think about the things he may not be able to do or may struggle with and try to look at helping him cope with his CP, I have alot of people I can talk to but nobody really in the same situation I have always found that if you have a problem and want to talk people on here will always offer their support and words of wisdom.

    Hope I have helped and you havnt fallen asleep reading this yet, ha ha.

    Cheers

    Dylan's Dad x
  • fox111fox111 Member Posts: 6
    hi lucy and dylans dad

    my son has milp cp from the waist down

    I know how you are feeling ive none for 3 years and still find it hard, the guilt i feel will never go away.

    He has good and bad days when having growth spurts etc

    currently we are having a bad time not sure why, we get no sleep he cant control his temp, is exausted and so emotional he cries for hours over silly things it breaks my heart.

    He is lucky really he is very bright and a wizz on the computer, he has a wheelchair for long walks when he gets tired
  • edwards49edwards49 Member Posts: 4
    Hi all,

    My story is very similar...I am a 34 year old single mum, Max is 2 years 4 months and he was diagnosed at 5 months following complications at birth. He has hemiplegia CP affecting his right hand and leg...but it is very mild and people often think I am making it up when I tell them!

    As you all say...initial reaction was why??????, lots of blaming of self and lots of tears. However, you are right this gets easier and you learn to look at achievements rather than 'issues'!

    Max is so chatty and very intelligent... I am allowed to say that as I teach children of 4-5years and he is brighter than some of those!!! Ok and yes I am a typical biased mummy!!!!! :[)

    Scope have always been brilliant to me and there when I needed them most. Don't bottle things up and always ask if you are not sure about anything. I went through the nurotic mother syndrome a while back as Max was having 'episodes' where he goes blue and then he began to have mild siezures...I was so worried that the hospitla and his doctors thought I was making things up, but I have since realised that I'm not bothered how many times I ask why? or what? I care for my child and I have a right to be supported.

    It's so good to catch up with people in the same sintuation on here.
    Thanks for listening to my story too.
    Kim x
  • stephgreenstephgreen Member Posts: 28
    Hi i know how your feeling, but i cant imagine how hard it must be to do it on your own. My little boy hasnt been properly diagnosed but he is very stiff in all 4 limbs. We are waiting MRI and genetic tests also. I did have a huge bleed at 34weeks and i think this is what went wrong. You will feel better we have known for a few months now but we definatly feel better about things now. At the time you think it never will feel better.I do have really bad bad days where i just cant believe its happened and why us. But i also think im so glad we have Jack but also so scared for his future. The best thing to do if you can, is live for today and focus on what they can do now. It is so hard cos somedays all i think of is the future but it doesnt change anyting!! Take care of yourself too!!!! its easy to forget about yourself
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