A father’s fear – living with cerebral palsy

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Life with my wonderful son Matthew James Mawuli Dyer, affectionately known as MJ, is a true test of patience and faith.

Unfortunately, MJ was diagnosed with Cerebral Palsy when he was six months old. The condition affects all four of his limbs, so life for MJ is a constant struggle and frustration. Tasks which other two year olds find easy and don’t give a second’s thought to are impossible for Matthew to achieve. He is, for example, unable to sit up, crawl or play with toys – all of which can be deeply depressing for myself and my inspirational partner and his loving mother, Melanie, who organises our response to his needs.

When we had an inkling that MJ was failing to meet his developmental milestones, I trawled the internet to see if there were other babies with similar problems. Eventually, I came across a video on YouTube of a boy of similar age to Matthew, and as I watched this little boy struggling to lift his head off the ground or even move his limbs I was overcome with a wave of great sadness and fear. I was looking at Matthew!

I called on my partner Melanie and asked her to watch it with me. The same emotions which had previously gripped me could be seen etched on her face, exclaiming, ‘Oh my god, Matthew has Cerebral Palsy’. We held each other and began to cry.

Nothing prepares you for news like that. All the hopes and dreams you have as a parent obliterated in one five minute YouTube video.

Initially, it’s the fear that grips you. The realisation that you are going to be looking after your son for the rest of his life is overwhelming. Some of you reading this might say, ‘that’s the same for every parent’, but not every parent is going to be helping their adult son when he is on the toilet, or of having to get up in the middle of the night to help turn over a fully-grown son because he can’t do it for himself.

This type of fear can’t be explained. You need to live it before you can truly understand. I don’t want you to think I am being selfish or that I am looking for sympathy from this blog- far from it. I just want to make people aware of the type of feelings parents with disabled children have; and to those in a similar situation to our own I want to tell you it’s OK to share how you truly feel. It does not make you a bad parent. There are some days I wish I could go back in time, and have the care-free life I used to have, but when I think of Matthew I realise my life is much happier and rewarding for having him in it. The love that I feel for him is so big my heart could explode – but I must say there are days I struggle to cope and hide this from my family. This blog is my way of sharing my feelings.

MJ has unbelievable determination and strength of character (he certainly knows his own mind) coupled with a positive and happy persona, which makes him a real character.

The last two years have been the most enjoyable, rewarding, emotionally draining and depressing of my thirty years on planet earth. I wanted to start this blog as a way of venting my frustration and sharing with anyone who is interested in the struggle and the joy of looking after a severely disabled child.

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13 thoughts on “A father’s fear – living with cerebral palsy”

  1. My heart goes out to the three of you and your life ahead together.
    Our children are so precious to us and the unknown of his future is hard to comprehend .If you can speak to other parents in your situation it might be good to share your pain as only people in the same situation as you can truly understand.We none of us know what lies ahead but to live and love in the now is important to get through each day.Mathew knows that you love him and treasure him.Be kind to each other. Xxi

  2. Bravo for putting your thoughts and feelings into words…there are so many “mommy blogs” (mine included) out there where mothers share their experience of raising a child with special needs, but there aren’t as many “daddy blogs” that tackle the subject. My ten-year-old son has CP as well, and while there is not a doubt in my mind that my husband loves him more than anything in the world, there is also no doubt that men handle and process raising a special needs child differently than women do…I think your blog will absolutely help the dads out there realize that they are not alone in their experience. Good luck and I look forward to future posts!

  3. Luke, you and Mel are both inspirational parents, and Matthew is beautiful. That was lovely words you have written about your joy and struggle. love to all 3 of you and hope to see you soon
    Love Anne xxx

  4. Hi bud long time no see!! Just a message to let you know that ur doing a great job. I’m sure there’s many testing times ahead but I know for sure, one little smile from MJ and makes all that go away. Tell mel I was asking for her and give the little fella a fist pump from me haha!! Take it easy champ

  5. I have the greatest respect for you and your family. Thank you for sharing this with us. I think it’s so important for others to understand this experience and hear your voice.

    1. Luke it has been a long time, I think the last time I saw you you were a little older than Matthew himself!! Your son is a very lucky wee man to have such caring parents. Wishing you all the very best and look forward to reading more! Love to all, Ally

  6. My heart goes out to you and the family cousin! I can’t feel your pain but i can understand how you feel because you only human and just as you stated earlier, IT’S OK! I pray that God strengthens you and Mel and works out a miracle for all of us as we are one BIG family. love

  7. This is how you share people… fantastic blog Screech. Your words inspire. You and Mel are great parents and thats what you should both always remember.

  8. Hi, your story is inspirational & touching. I just wanted to let you know it really does get easier. My baby will be 3 at the end of the month with just as complex needs as your beautiful boy & I can hand on heart say its been the best year of my life. Shes has settled down, more comfortable and confident in her self, sleeping lots better, which was non existant before, which the only thing I can put it down to is her getting biggar. We are now living like a “normal” family… dining out, long walks, fun family days out – enjoying every min, it pains me leaving her to go to work now, when 1 year ago I took the job to get away from her… try live for now not for 10 – 20 year’s down the line, focus on what he can do not what he cant.. this past year my baby has started to smile & even shoulder shaking laughing, which i was told she would never do. No one knows what the future
    holds & I believe my precious was given to me to make me a better person, which she certainly has. I wasn’t always this positive but when im down & feel like giving up… I think if my daughter can cope with numerous seizures, muscle spasams, tight sore muscles, then I can cope with looking after her.
    take care, chin up & love to you & yours xxx

  9. Thankyou for ouy lovely blog. We are many years ahead of you with my beloved son Dominic who is now 21 and is totally dependant. Mentally he is fine but physically very disabled. He has strenghth of character like no one on this earth. He has given us strength of character and taught you what matters in life. You will manage with many fights on your hands many emotions and so much joy.

  10. Hi Luke. Thanks for sharing. MJ is a gorgeous wee boy.I know too well how hard things are. My Daughter is 6 with CP (and many other issues).
    I’d be lying to say things will get easier, but like everything in life it is a roller-coaster ride.
    Find strength from each other, cherish the good times and celebrate EVERY small memory and achievement MJ has, because this is what makes life worth it.
    Sending our love!

  11. Hi Luke,

    This blog is inspirational and will be a help to all parents.

    We’ve recently had a little girl called Romy and whilst I can’t begin to imagine what you must be going through, I can sympathise absolutely with how awful it must’ve been to find out that things would be harder for Matthew. He looks like such a beautiful and happy little boy though and so you guys are obviously doing great! 🙂

    Almost 5 years since we graduated can you believe!!

    Madeleine

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