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Feelings upon discovering your child has CP

Hi forum, new poster here. We've recently discovered one of our 2 month old twins has substantial damage to his brain, most likely to result in CP. Can't say for sure how serious it will be as he is so young, however we can already notice stiffness in his legs and back, and seemingly uncontrolled spasms.
My question is how do you cope with the emotions of this and does it get any better? Since hearing the news I've lost all joy of life, have no appetite, not sleeping ...etc. It's always on my mind, from first thing in the morning until last thing at night. I don't find satisfaction in anything, even spending time with my children who I love dearly.
Do these feelings go away? Or is this going to be at the front of our minds for a very long time? How do you deal with the news, and get on with making the best of it?
Sam
My question is how do you cope with the emotions of this and does it get any better? Since hearing the news I've lost all joy of life, have no appetite, not sleeping ...etc. It's always on my mind, from first thing in the morning until last thing at night. I don't find satisfaction in anything, even spending time with my children who I love dearly.
Do these feelings go away? Or is this going to be at the front of our minds for a very long time? How do you deal with the news, and get on with making the best of it?
Sam
Replies
Join the club - I also have twins (boy and a girl), one of whom (my son Tom) has Spastic CP affecting all 4 limbs. I can't tell you that it'll ever be easy and that you'll go 'oh, its fine' - you are bound to have days when you wish with every fibre of your being that you could make things different, but it WILL (I promise) no longer be the sole thing you think about and you will come to not think about it and mourn about it all the time and that happiness will return. I didn't think that we were ever going to get over it - I felt just the same as you when he was diagnosed 2 years ago but I have learned to live with it and most importantly, I love and enjoy every day with the kids, I take huge pride in the progress that he's making and I am having a wonderful time with them all (we have a 5 year old too). It's not the end of the world, just the start of a new one for you all.
Take every bit of help that you can get your hands on, fight his corner, get into a group or therapy where you can spend time with other CP parents, keep talking to your partner and accept that you will both be dealing with this in different ways and don't hold all of this in. Talk to your friends and let them help you through.
I'm here for a chat if you need me.
Maria xxx
He's such a lovely baby and doesn't deserve this, I think it every time I handle him but hopefully I can push those thoughts away in time.
Sam
Thinking of you all
Maria xxx
That YOU are the expert when it comes to your child's condition and if you do
Think there may be an element of Negligence then pursue this, you will need the extra income to provide care and equipment for your child in the future. Hope this helps x
He was fed through an NG tube because he did not develop a gag reflex and had a weak suck. We too think it was neglegence. I was 41 weeks and 2 days when I went into labour. I had a low risk pregnancy and what I think was a normal 12 hour labour. However he was stuck for 2 1/2 hours, back to back and it appears the signs of mecunium and distress had been missed. By the time his heart rate dropped it was too late and he was born with an apgar of 1 as he was pale, floppy and not breathing.
I am torn with emotions. I'm angry that I carried a healthy child and put my trust in the midwife. I'm worried every second of the day.
My child had an MRI at 10 days old and it showed brain damage. He has high tone in all 4 limbs and has just been diagnosed 2 days ago with 4 limb cerebral palsy.
But I have to have hope. Tobys gag reflex developed at 18 days old after we were told it was likely he would be tube fed the rest of his life. He now feeds orally from a bottle like any other baby. He smiled on time at 6 weeks. He smiles socially, he is very alert, he follows objects, he bats at toys and kicks his legs. He is almost giggling, coos and ahhs, he can now roll from front to back during tummy time and has great head control. His hips are normal and he can lift his head and shoulders off the mattress when lying down. He has also started grabbing his toys, however he uses his left hand more easily and his movements are quite rigid with his index fingers curled in.
I do not know how he will develop but please have hope as I do. With early physiotherapy a child can grow to do well even if he does not meet all his milestones on time. Every child is different including those with cerebral palsy so they just need alot of love and care.
Toby may have increased tone and may not be using his hands as freely as other babies but he is still able to reach his arms out to grab things and he is only 11 weeks old!
I have good days and bad days. I cry most days as it has just recently happened. I feel lost, bitter, angry and heartbroken but then I look at my beautiful son and know everything is going to be ok.
This did not happen to me it happened to him and I will spend the rest of my life making sure my son is happy. I don't know why it happened but better he was born into a family like mine rather than a family that wont help him reach his full potential. I have a very loving, caring, close, happy family and a wonderful husband and I will make sure my child will feel every bit of that love.
Please keep in touch and let me know how your little one gets on. I will save some of my hope and faith for your little one too.
Tracey
p.s sorry long winded!