Please help

• By Sasori
• Posted November 6, 2009 at 4:40 am
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It is a hard situation you are in, and no matter what the level of disability your child suffers, it is always the worst thing that has happened in your life, so don't compare yourselves with others. That'd be tip number one!
Tip number two, is surround yourself with others who have been there and done that. Is there a CP Coffee group in your area? If not, can you start one? Put up notices at your therapy centre. Our daughter is quite severe so we always knew there was something wrong, but once we got the diagnosis of Cerebral Palsy, and found out about our local coffee group, life became more bearable because I was suddenly surrounded by parents who knew what I was talking about and understood my feelings. Unfortunately 'normal' parents just can't cut it in that respect - teething issues don't quite compare with a life long disability!
Third tip - keep your sense of humour. Believe it or not, life does go on, and you will get through this. You will still have your angry moments, you will still have your 'feeling sorry for yourself' moments, but they get easier to deal with. And remember that it is OK to have all these feelings. It is a normal grief process - you may not have lost your child physically, but you have lost the dreams you had had - let's face it, everyone fantasises about how their kids will grow up, and yours just got shot down. Take heart in that your son is mild, and with help with his physical limitations (which perhaps he can overcome quite well from what you describe) will succeed in life. CP kids do grow up and get jobs and have families too.
Fourth tip - do something about it. Find out lots about the therapy availalbe and do it. Don't beat yourself up if you miss a day or two, but make therapy part of your day. Take up swimming and horse riding, both awesome activites for CP sufferers. Hips are a danger point - dislocated hips. If your son 'scissors' when walking you need to do your best to keep his legs apart as much as possible to help the hip develop properly.
Tip five - keep things normal. Your son needs to do everything everyone else is. Be proud of his accomplishments and always encourage and even push him. Never worry about what others say or do, and don't be offended or shy when people ask about your son if they recognise his difficulties - your son will take his cues about himself by how you act.

Tip six - really important one - talk with your wife. And let your wife talk with you. Share ALL of your thoughts. And both remember that it's ok to have sad thoughts, angry thoughts etc. You need to know you are both on the same page, and a team, and you can't do this if you hold things back from each other. You are stronger together, and your son will benefit from this.

Tip seven - once you have made it through this stage of grief, take time to help someone else through it. It helps to know that although you may not be able to rectify your own situation, you can help someone else through it. Don't be surprised if this one takes a while to get there tho. It is normal to get sudden attacks of jealousy and anger - the supermarket is the trigger for me - seeing all those other 3 year olds running along beside the trolley while my daughter lolls in her pram or backpack is sometimes a bit much. So I come home, I tell my partner, we have a grump, then we have a laugh, and we put it away. LIfe goes on.

Google: Welcome to Holland. It might help. And hang about in here - there are lots of friends to be made, and many have been right where you are.

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• By Sasori
• Posted November 6, 2009 at 4:41 am
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Oh and BTW - what a cutie!

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• By Noels_Mummy
• Posted November 9, 2009 at 7:12 pm
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Hi!
I have a six month old with a mild case of CP. Her condition is actually a symptom of something else. Sadori has a lot of good points and has helped me a lot. She is right about everyone of them.
My biggest point is be your child's advocate. Find out what is happening in your area that will benefit him. Look into Message therapy, horse back ridding, (we own horses and I try to get her on him once a week) and all different types of therapy. I find I have to be on top of everything. One of her doctors once said to me, "Your the one who knows your child best, your the best source of knowing what is going on with your child." And it is so true. There is no such thing as to many questions!!
Get your son his own medical notebook, and day timer. I find sometime her day timer is more packed then mine!! The notebook will come in handy for questions you want to ask, making notes, keeping track of everyone in your child's life.
Also remember to take what the doctors say with a grain of salt. Your child is an individual who will set the tone of what he can do. Just keep doing what you would normally do. And make a point to have fun!!! We do a lot of fun things just for the sake of it.
With your wife, take time for both of you. Go on dates, go on retreat weekends just the two of you. Its a good time to make memories that will help you through the harder times. Also make up a "just in case medically manual." We have one so we don't play the blame game with each other. We know how the other feels about different therapies, new medicine, and ect.... Its not often we both make it to a medical appointment. Before any appointments we sit down and ask each other if we have any concerns, (very helpful.)

I take one day at a time and remember to do something for yourself each day. (Even if it is going for a walk, or have an half hour by yourself, or take a shower.) Most days I take one of her nap times and read a book. (Even if the laundry is piled up.)

Candice

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