Parents, carers and disabled parents
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Stokes neonatal.

My son was born in March and we found out two days after he was born (after suffering some seizures) that he had suffered strokes in utero and as a result an MRI scan showed that he has severe brain damage. Consultants say that it seems to have affected more of the movement and motor side of his brain. This is likely to cause cerebral palsy and possible epilepsy. We have no answers to what the future will hold only that we need to see when and if he gets to his milestones. It's incredibly hard and I'm looking to talk to people who know how this feels and how isolating it is. Please get in touch if you know how it feels to live with such uncertainty and with any tips on how to cope.

Harry is now almost five months old, the consultant has noticed stiffness in his arms and a slight stiffness in his left leg. He is fixing and following, smiling (sort of) and eating but other than that he is lagging behind. He has a head lag and at the moment I just can't imagine him being able to sit or laugh like my friends baby. It's tough.

Thanks. Hayley

Replies

  • ScopeHelplineScopeHelpline Member Posts: 209 Courageous
    Hello Hayley

    Yes, it is tough for parents in having to wait and see what the future holds with no immediate answers and as you are aware, it is a case of waiting to see how Harry meets his milestones. There are many parents who will know how you feel and hopefully you will get replies to your post which can make you feel a bit more optimistic. Physiotherapy is important in the early years to assist with motor control.

    As well as posting on the community you can always give the helpline a ring/email to discuss any aspects of cp, and general disability issues that you might have queries about, and depending on where you are in the country we may be able to refer you to regional worker. Our contact details are 0808 800 3333 or [email protected]

    best wishes
    Scope helpline
  • RosRos Member Posts: 12 Connected
    Hello Hayley,
    I have a daughter with cerebral palsy who is now 31 years old. As I look back over the years, yes, it has been a tough journey, there's no denying it, and there have been plenty of tears along the way. But at the same time, the joy when your child achieves something you've been told they'll never manage is amazing. In fact, every achievement they make gives you the most incredible buzz because you know what effort it has cost them. And so I have this sort of feeling that we parents of children with cerebral palsy live life to its fullest more than other parents. Our lows are lower than anyone else knows, but are highs are higher than anything other parents have ever dreamed of. So I know my daughter has made me the person I am today, and I have a feeling that when I'm an old lady I'm going to look back on a life that's been really lived, not a mere existence. So all I can say is enjoy the good when it comes - it will carrry you through the hard times. And accept every bit of help that's offered. I wish you all the very best.
    Ros
  • hayleymc83hayleymc83 Member Posts: 3
    Thank you Ros, your message has made me think about things a little more positively. I suppose it's just getting used to the uncertainty and taking one day at a time. I am so looking forward to Harry hitting some of those milestones. On Monday Harry's consultant said that his legs are showing signs of some over reflex which as you probably know means that the tone is greater than normal. I was very upset about this because at our last appointment we was told that his legs look healthy and that it would be very likely that he would walk. Now he's saying that's he's unsure again. I was even allowing myself to think about him playing in the park or kicking a football. His arms are stiff and the consultant confirmed that but as far as I was aware his legs seemed unaffected. These sort of knocks I assume I'll have to get used to.

    Hayley
  • RosRos Member Posts: 12 Connected
    It certainly is a roller-coaster ride, I won't deny that. You will experience unbelievable exhaustion, but also find reservoirs of strength in yourself that you never knew you were capable of. You will start to find which people are really helpful. For me it was my church and I know I was very blessed because not everyone has this kind of support. They got up a rota of people to take care of my housework and meals, and when she got older a physio in the church trained some people who then took it in turns to come round and help with her physio exercises. When she got to the age of 10, 2 families even had her to stay for half a week each so that we could enjoy a respite holiday with our other 2 kids. That's what I mean when I say accept all the offers of help. Don't feel guilty about it - some day, a few years down the line, you will be doing it for someone else.
  • NikiMNikiM Member Posts: 36 Connected
    Hi Hayley,

    Can I just reiterate taking it each day at a time which I know is easier said than done. My daughter is now 11 and had I known when she was diagnosed at 5 months how severe her disability was going to be I would probably have never gotten out of bed! However as she developed into the happy funny strong and joyful child that she, as her personality came to the fore I was able to accept the tough appointments when it became obvious she would never walk or talk. I called it positive realism, so being positive about all the things she could do and not focussing on all the things I kept getting told she wouldn't. It wasn't easy and I cried a river after almost every appointment. As an aside my daughter was never bothered about being able to walk even at a younger age, she was more concerned about not having speech, although she is now a hugely proficient communication aid user and about to start at a mainstream secondary school.

    I guess what I am trying to say is give yourself time to deal with all of this, it's still very early days and all children are different so even the doctors won't be able to say difinitively how your son will develop. Don't think further than dealing with issues that affect your life and his over the next few months by which stage you will feel stronger to deal with the ne t stage and so on. Draw strength from your loved ones and talk, talk, talk about how you are feeling, here or to the helpline or your friends. Finally use the knowledge around you to become the true expert on your child and trust me you will. hope this helps even a little. My daughter is the best part of me and in spite of my haphazard parenting is growing into the most wonderful girl and I am proud of her every day of my life!
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