Sweet baby boy

• By Sasori
• Posted May 12, 2009 at 4:44 am
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Here is a good start! CP has such a broad spectrum. If you're in the States, the message boards on places like eBay are great for meeting other parents. Hunt out a CP coffee group in your area. If there isn't one already - start one! That was the best support for me (also around 5 months), to learn from all the other mums who have been there and done that.
Also, it is normal to grieve when you get a diagnosis such as this. You are grieving a loss, the loss of the baby you had expected and planned for, and it is completely healthy and normal. Don't bottle it up, and do communicate completely and openly with someone. My partner and I have always told each other everything, even the darkest thoughts, so we know we can always turn to teach other. That is hugely important. It's ok to lost - there is an awful lot to take in, the physio, all the medical people and all their medical words, and then just how you and your family are affected. It will take a long time. Our girl is 2 1/2 and we still have our off days. But aim towards acceptance - after that, the only way is up. You are now advocate for your child, you know best. Be strong for your child, but let your guard down and let it out often. Share your story and seek out others. It feels better to feel part of a group, especially when you can feel so alone and hard done-by (and lets face it, every parent feels that when this happens...it isn't fair). It will get easier, I promise.

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• By lalacakes
• Posted May 12, 2009 at 10:51 am
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Hi,

Sasori gave you such great advice!!! My son Jacob was born very prematurely and had a pretty bad brain bleed and we knew that CP was a definite possibility. He then showed dev. delays and by the time he was diagnosed at 11 months (7 1/2 adjusted) I knew to expect to hear the words "cerebral palsy." It isn't easy but for me it came in small doses, first knowing that my twins were going to be born early, knowing that my son Samuel would probably not survive, finding out about Jacob's bleed, seeing his developement not progress as it should have, etc. But when I first heard about the fact that CP was one of the things we might be dealing with I had a really hard time. I have a cousin with severe CP and that was all I knew. I had no idea, like Sasory mentioned, that there is such a broad range of CP. Our children's pediatrician has a patient that has CP and no one can tell but the doctor - it is that mild. My son who is 20 months old actual can't walk yet but all of his therapists think he will walk someday. His main PT even said there is a chance he will have a normal gait...I never would have thought that would be a possibility but I have never gone through this process before. So, I have learned not to close doors for him! To be open to every chance at being "normal." If he isn't, then I be fine - I will adjust to his needs and I will still love him just as much as I do now. I am the kind of person that always hopes for the best and then adjusts to the situation. I would rather do that for Jacob than give him limitations.

Just curious - who diagnosed him? Are you involved in your states early intervention program - there are different names for it in different states. Your pediatrician can give you the information if your aren't working with them yet.

I don't know if I helped or not....I know for me it is better to be connected to people who know what I am going through. When my son died I had a friend that really helped me - she had lost her baby when she was 6 months old. Our circumstances were different but she knew the kind of loss I was going through. When my other son was in the NICU I had a few people I knew that had babies in the NICU and they were a great support. Other than my aunt and my son's therapists I haven't found anyone to connect with regarding my son's CP. I know it would be nice to have someone to connect with. If you have any questions I can try to answer them. Or if you just want to reach out send me a friend request and we can email each other!

Take care and know that you will adjust to this new information you have been given. I know it is scary at first but it is something you will be able to deal with, I promise!!!

Elise

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• By Mlissa
• Posted October 5, 2009 at 10:30 am
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Hi,
I really feel for you and know what you are going through as my daughter got diagnosed with Spastic Diplegia CP when she was 2 years old after we finally got an MRI..and 2 months later the results..i had done alot of research before the diagnosesis and i kinda knew what they were gonna tell me, but it didnt make it any easier, It gets me at night, in bed, is when i cry, She is now 3 years old and she is amazing, She cant walk unaided she uses her kaye walker which she loves.
One day she said to me...mammy, i cant walk..and i said why ? and she said cause my legs are broken..and i swear, my heart broke into a million pieces.

It gets to me when she cant wear lovely shoes like all the other girls, she loves pink so she would love nice pink shoes, but because of her splints, she can only wear a certain type.

I am very lucky to her she is amazing, so intellagent and everyone falls in love with her as soon as they meet her, Ive learned to except she is who she is and god has given me her for a reason and i am so proud to be her mother.

I wouldnt change her for the world.

i know im relping to this very late but i jus feel like i need too..
its lovely to find somewhere where others know how you feel.

all the best

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