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i am a 28 year old who has a 20 month old son with cerebral palsy he cannot roll over or crawl or walk yet i am finding this very hard to cope with as i find myself looking at other children and wishing my son could do the things that they do.josh was born 3 months early and had a twisted bowel which needed surgery and also had 2 hernias. last christmas he had bronchiolitis and nearly died twice. iwas ok until june last year then everything hit me i cannot seem to accept that my son is disabled i have felt very suicidal but i also have 2 other children aged 10 and 12 who were born normal thats why i find it so hard is there anyboby else in this situation as i need someone to talk to. ↓
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| Name: Amber L | Date: Jan 10th, 2006 11:15 PM |
| Hey lisa i've been trying to contact you please email at [email protected] ↑ |
| Name: lisa wilson | Date: Jan 11th, 2006 5:14 PM |
| amber i have sent you a few emails but i havent had any reply my email address is [email protected] .co.uk ↑ |
| Name: Jennifer | Date: Jan 13th, 2006 3:38 AM |
| I am 27 year old mother of two. My youngest is 3 and has cerebral palsy. She was two when she learned to walk. Kids around her were running and playing. I kept thinking of what I could have done to cause this. We started physical, speach and occupational therapy that helped me focus on helping her. You have to grow as a person. See not what he can't do but what he can do and what you can do to help him have a better life. No matter how disabled anyone is, they have alot to give. Being disabled has a stigma on it it should't have. I just read today an artical called disabled. The auther said "disabled is the only minority that anyone can join involuntarilly and at any moment" ↑ |
| Name: Beth Schneweis | Date: Mar 21st, 2006 4:45 AM |
Lisa-
I have a 7 mo. old that was born with CP and Hydrocephalus. I can relate to you totally. He cannot lift his head, push up from the ground, talk, or anything. I spend many hours a day crying. I "survive". My little guy has 3 hernias. Vomits regularly... still on formula, no solids. Feel free to email me, and we can talk more. I am just now getting aroung to find a "support" for me. My email address is: [email protected]. ↑ |
| Name: Taylors Mom | Date: Mar 30th, 2006 10:02 PM |
Hi Lisa,
I have a 19 mo. daughter who was born 2 months prematurely. She hasn't been officially diagnosed with cp but the doctors say she more than likely does have it. We are in Physical Theraphy 3x a week, Occupational Theraphy 3x a week and Speech Theraphy once a week. It seems to be helping but is such slow progress. She isn't sitting up, crawling or rolling over. I have to physically carry her everywhere or prop her so I can get a break. I too get depressed because I have 3 yr old daughter who is perfectly healthy and her labor and delivery was by the book. Its hard to deal with this. I have separated myself from friends because they can't understand what I'm feeling or going through. I just wanted to drop you a line and tell you to hang in there, your not alone. ↑ |
| Name: Souza | Date: Apr 1st, 2006 3:15 AM |
| Hi if anybody has tried HBOT I would love to know if it works. I have a 4 year old beautiful boy who has hypotonic cp and we were considering this treatment. We don't wont to put him through all the hours of therapy if the outcome is very minimul. Please let me know if you know or know of anyone who has tried this - would greatly appreciate any feedback. You can email on [email protected]. PS if youv'e seen this message on other sites its because I'm haveing trouble navigating my way around especially as im not used to Chat Rooms! ↑ |
| Name: Cass | Date: Apr 2nd, 2006 11:57 PM |
| I have a 5 year old with mixed Cp. She walks now but did not follow any "rules" She waled at 22 months and never crawled. She has bad balance and fine motor control. But I have never given up. PT, OT and speech therapy as much as three times a day ↑ |
| Name: Taylors Mom | Date: Apr 3rd, 2006 5:38 PM |
Cass,
I have heard that some children with CP will walk but it is around 3 yrs. I am hopefull my 19 mo. old will. Can you give me an idea of how your child came about finally walking, or atleast trying to be more mobile. I am grasping on to any thread of hope for my baby. I try to put her on the floor and on her belly but she gets so frustrated and crys.
Thanks ↑ |
| Name: cass | Date: Apr 3rd, 2006 11:44 PM |
| Hey e-mail me if you want at [email protected]. Where do you live? ↑ |
| Name: Kim | Date: Jun 27th, 2006 11:41 AM |
Hi Lisa!
I have CP son who is 12yrs old, at 21 weeks old we were told our son would never walk, talk or do anything! Well do I have news for that Dr!! He Walked at 4yrs, he talks alittle, he signs alittle and he loves alot! It's bloody hard work but I know so much more then I ever would of, this is my job, this is our job to reach out to others who don't know!
My son is sever in just about everything and it is hard to cope with at times but along with Respite and a good night out with the girls every now and then I seem to get through each year!
Massage every inch of your son whenever you can!
Tickle your son all over whenever you can!
These are things that I did for my son that I think helped him so much, plus everything else like physio, hydro, ot etc
Be happy, sing and play with your baby and love him!
Cheers Kim ↑ |
| Name: Michelle | Date: Jun 30th, 2006 11:03 PM |
| sweetie i can understand that it is hard to accept that your little boy has a disability, but everything happens for a reason, and he was given to you because you can give him the best care no matter how hard it may be. i know it is frustrating and difficult to watch other children his age and younger reaching milestones that he may take a long time to reach or never reach. but u cant lose hope. i take care of a child with CP and his mother was told when he was 4mos old that he would never roll over, no less crawl, walk etc. he has defied so many odds and your son may do that too. just hold onto hope and stay strong for him. if you need to talk email me at [email protected] ↑ |
| Name: renee | Date: Jul 1st, 2006 10:27 PM |
i have cp to im 18 my name is renee i had it since i was born with it since 2 years old and it is hard to deal with it
renee ↑ |
| Name: linda | Date: Jul 2nd, 2006 2:49 AM |
| Hello Lisa, having a disabled child can be very difficult. I too have a child with a disability she was un able to sit, rolle, put her hand to her mouth ect.... I had a lot of tearie nights and a lot of hart breaks. It is difficult but there are thousands of people out ther that are going through the same thing you are. I think you found a great resorse that is to reach out to others and talk. It does help. I wish you great luck with your son. Im sure you will over come you feelings and become a stronger mom. ↑ |
| Name: marydisabled | Date: Jul 19th, 2006 4:56 PM |
| i know how you feel , i have a 5 year old daughter who has cerebral palsy and a have 8 year old twins who are normal . i feel so bad because she always has this look on her face like why cant i walk like them? it breaks my heart , but i try to have fun with what i have , i tell the twins to play with her a treat her like everyone else . i wish i could give her what the twins have . ↑ |
| Name: mantsmom | Date: Jul 25th, 2006 3:40 PM |
| Hello,my name is kim, I also have a child with cp .My daughter sam is 14 and I have been in your shoes.It is very hard to look at other children that are not disabled.I found myself always asking why me!It's been a long road and very bumpy but Im in a good place now.I do things with my child as I would my 2 younger boys .Just because your child is disabled don't let anything get in the way of you showing him the world.My sam has been in a wheelchair all her life.She never learned to sit up or feed herself she is verbal but not with words.I have learned to understand her wants just by tone and expression.I'm from a very small town in oklahoma not near any major cities.So the schools here are stuck in the 60's.There is one thing you need to know when your child enters the sch ool system you are your childs advocate.Please if there is anything you want to know email me at [email protected] ↑ |
| Name: jennifer | Date: Jul 28th, 2006 11:02 AM |
My name is Jeni and my daughter was diagnosed with CP and with much PT alot of work and manipulation with her ourselves and Im sur the prayers have done the most her brain is healing and the doctor is seeing less signs of the cpwhen they are this young so much can happen so keepyour hopes up and all your children need you espescially at these preteen ages theyll learn to cope the way that you show them and you sound like you care alot about all of your children, your doing a good job my babys name is mady and she had menningittis at 2 days old also suffers with seizures and as a result permanent hearing loss (aids in both ears) her last eeg showed no seizure activity there is hope and my other three children were also born completely healthy and it is life changing event not just for us mothers but for the kids if were ok with things they usually are also I can relate to how depressing itcan get so if you are or get serious about suicide promise you will tell three poeple before you do anything and I dont count, a doctor a counselor a family member a friend or even go down to the nearest ER they always have a counselor there just to talk
Hang in there jenijeni ↑ |
| Name: lindalu | Date: Jul 30th, 2006 4:59 AM |
| Hello sweetie, I know how you are feeling! It was not that long ago I felt the same way. It is a shock to say the least when you find your child may not be the same as other children. He may not roll...crawl...or walk but he will still be that sweet little child you gave birth to. He will need you...No it will not be easy but if you can stick it out it will be worth it!! I have a daughter who has a congenital spinal cord injery. She is now twenty years old...I was seventeen when she was born...just a child my self. When she was 8 months old I was told there was somthing wrong... she couldnt do any of the things that you mentioned. I too worried as to how she would turn out ...would she talk?....how would she appear mentally? All those questions went through my head. My daughter is now an adult she has graduated high school....went to collage and received a degree in graphic art & desighn. I shame myself now for feeling the way I did. All that time I looked at her as beeing disabled I now know...I really was the disabled one! You see, your son isnt dis abled he simply will need special care. Not any one can provide that...It will take a special person to care for him. Mom that special person is you! as he grows you will understand more about his condition...with knowlage you will get comfort. You wont feel so afraid, your feelig fear now... the not knowing scares you that is perfectly normal. Cry..scream...yell... just get it all out! you will need to do it from time to time. God sent this verry special child for a verry special person! He knew you could stand up to the challenge...He gave him to you for a reason! I wish the verry best for you...I say you because your son will be fine. Big ))))HUGS(((( to you! ↑ |
| Name: jitan | Date: Aug 13th, 2006 1:14 PM |
| i also have a child with cp.as it is our 1st child we were totaly upset .but we have hope and trying for best.i want to know more from u. my id [email protected] ↑ |
| Name: momof3onewithcp | Date: Nov 11th, 2006 1:54 AM |
Hi
I have a 71/2 yr old son with spastic quadripledgic cerebral palsy. He is in a wheelchair, uses a walker to try to get around. He is also deaf and has a cochlear implant but is non verbal. I also look at kids Jacobs age and wish he was doning the regular kid things. i found it very hard to accept his disabilities. I went to my doctor and am now on ant depressents. It is helping. I also have a little girl she is 27 months and a little boy 14 months. My kids are the world to me and Jacobs eyes and smile make the hard work worth it. God only gives special babies to special moms. He never gives you more then you can handle. It is also very hectic here. If you would like to chat more [email protected] ↑ |
| Name: Krystyna | Date: Nov 14th, 2006 5:25 AM |
| Hi Lisa, my name is Krystyns. I have 22 mth. with CP. steel not walking. We just got that news,which was hard. Sidney had some eyes surgury when she was 1y, now she needs another eye surgury. We are going crazy to find her right physio which is not easy, and I don't want to wait 5 mts.for gover.sponsor program, its crazy, she needs it now! I wounder if you heard any thing about Medek therapy? ↑ |
| Name: pamom2crew | Date: Nov 14th, 2006 10:39 PM |
I have a little girl who just turned 3 in oct. who has cp. She was a 32wkr with severe apnea and bradycardia.
She will be getting hip and extension surgeries within the next year. She also has strabismus because of it.
She goes to a school where she she receives all therapies now.
If anyone is interested in chatting, my email is [email protected]
amber ↑ |
| Name: maureen | Date: Dec 6th, 2006 2:15 AM |
| i have a son also with cp.he delivered at 38 weeks because he stopped moving and was in distress.nobody told me while he was in the nicu that anything was wrong with him. i noticed he wasnt learning like my daughter did and took him in at 10 months at that time they told me he had a stroke at birth and was left with cp. he is deaf in the one ear so he cant talk he just makes noises to get his point across. he is 2and a half and i know how you feel my friends have kids and the ones younger then him are bipassing him it is heartbreaking ,my daughter was born fine also i have blamed everything for this i have blamed myself everyday since he was born but he is cute as a bug once they told me what was wrong with him i just wanted to stop loving him so it didnt hurt so bad but i looked at that little face and couldnt do it we live by one day at a time becouse i dont know what else to do.he is very small 25poundsat 2and a half .i have no one to talk to and would like to ↑ |
| Name: augerkay | Date: Dec 13th, 2006 6:04 PM |
| hi Lisa- My husband and I are the parents of a little boy- Bradley who was born 14 weeks premature. He is now 10 years old and weighs almost 49 pounds. He weighed 2 pounds 13 oz at birth and he is the light of our lives. We also have 2 other sons, our oldest is 17 now and the youngest just turned 8. I know all about what you are going through. I also couln't accept my son's disabilities, but one day I decided that this was meant to be and I couldn't change the situation, so I needed to learn how to deal with it . Please know that you are not alone. I always felt like I was alone- but I wasn't. If you need to you can contact me at [email protected] just remember he loves you as much as you love him.... ↑ |
| Name: sweetcaramalkiss | Date: Dec 14th, 2006 1:00 AM |
HI
My name is Donna and I was sort of in the same situation 4 years ago I had a baby boy named anthony and he is disabled I didnt know what to do with myself it kind of tore my family apart. My son's father even accused me of shaking my son or something crazy. I guess we both went through a really hard time accepting the fact that he was not "normal". I would find myself saying he will grow out of this and he will be fine one day. Eventually I had to come to terms with myself that this was my son he didnt ask to be different I know if he could talk and understand the world as you and I could he would ask to be like everyone else or why wasn't he like everyone else. At this point I have completely accepted my son but there still are times when I get looks and stares in public that still make me very uncomfortable. Its normal to feel this way because Its very hard emotionally I used to get really depressed at times when I would see children playing or doing things that he should be doing for example all his cousins are around his age and to see them all grow up and go to school or things like that it kind of still hurts inside. Recently I had another son who is 5 months old now and I was nothing but a big ball of stress during my pregnancy I thought I would never be able to have a "normal" baby and I was emotional all the time It was like I could never enjoy just being pregnant. Anthony still doesnt have an official diagnosis we have seen so may doctors its unbelieveable they said eventually it will be cp since they could not find anything gentically or metabolically. Well my email address is [email protected] if u ever want to chat we have a few things in common and its always good to have someone to talk to when they have walked in your shoes ↑ |
| Name: dana6 | Date: Dec 14th, 2006 1:29 AM |
| my son does not have cerebral palsy, but he does have some issues, he has a gross motor delay, mixed expressive/receptive language dissorder , excessive sleepiness, sensory issues, and the neurologist said he saw early signs of aspergers syndrome, i have four other healthy children as well, so i know how that part feels, if you want to talk i will give you my email address so we can chat, but the way i am 25 and a sahm of the 4 kids. ↑ |
| Name: sweetcaramalkiss | Date: Dec 14th, 2006 1:44 AM |
dana6
how old are your kids? ↑ |
| Name: dana6 | Date: Dec 14th, 2006 12:17 PM |
sweetcaramalkiss------
the kids are 6-4-3-2 tomorrow !!!!!!
i am so sad he is not the baby anymore:( ↑ |
| Name: sweetcaramalkiss | Date: Dec 14th, 2006 9:59 PM |
Dana6
How in the world do u do it? I have a 4 year old son who is disabled and I just had a 5 month old son Jayden and sometimes I feel like I just don't catch a break. But how do u do it with four If I can't catch a break I know you must have the same problem. ↑ |
| Name: Tracey A | Date: Dec 30th, 2006 2:54 AM |
Hi, I am a 30 year old and I have a 19 month old son, whose name is also Joshua, he has severe cerebral palsy. He has a twin brother who as far as we can tell is perfectly normal. I also have a healthy 4 year old son. I struggle every day as it sounds you do too. I would love to talk to you more.
Joshua and his twin, Jacob, were born at 32 weeks. Joshua was blue and not breathing when he came out. It was not until a week later that we were finally told that Joshua's brain was "dead", he has his brain stem and the cerebellum around it, but the rest is virtually gone. Unfortunately, we ran into a HORRIBLE neurologist that told us joshua was "a fate worse than death" situation. We were also told we should expect tojust put Joshua in a wheelchair and put him in a corner....well, we don't do that. I wish I had a happy ending to tell you that my Joshua is going to be "OK." But, it is very hard, especially to have his happy healthy twin running around. Joshua cannot see, he can hear VERY well. ANd he has actually just begun to smile. I would love tohear more about your Joshua. ↑ |
| Name: bazzi | Date: Apr 9th, 2008 1:18 AM |
I have had CP since birth. I have been able to overcome many of the challenges that it placed on me. With much gratitude, I am now about to graduate from high school. I have also been able to accomplish my goal of becoming a pilot.
I have been told no so many times that it has inspired me to achieve great things.
I want to share my story with others with cp as a way to prove that we are over comers. I am also looking for other stories of success, achievements or parents words of wisdom. My goal is to put these into a book of short stories to serve as an inspiration to others. Please respond, I can be emailed at [email protected] ↑ |
| Name: captain | Date: Apr 9th, 2008 1:20 AM |
I have had CP since birth. I have been able to overcome many of the challenges that it placed on me. With much gratitude, I am now about to graduate from high school. I have also been able to accomplish my goal of becoming a pilot.
I have been told no so many times that it has inspired me to achieve great things.
I want to share my story with others with cp as a way to prove that we are over comers. I am also looking for other stories of success, achievements or parents words of wisdom. My goal is to put these into a book of short stories to serve as an inspiration to others. Please respond, I can be emailed at [email protected] ↑ |
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