Wednesday, 08 April 2009
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My Daughter and Cerebral Palsy
by Mama Bee
She wasn’t diagnosed until she was around a year old. If you didn’t know her history or really sit and study her, you probably wouldn’t be able to tell. Her cerebral palsy is well hidden and she is as “normal” as anyone else. You see, she had a stroke in utero at around 25 weeks. It wasn't because I was drinking or doing anything selfishly stupid like taking pain pills or anything I shouldn't have been. You know, issues happen, even when youre doing everything right. The cause, still unknown though the Doctors have some pretty good guesses.
I have a bicorniated uterus so it was either because she didn’t have enough room to grow inside of me or I unknowingly passed on a blood disorder that caused issues with her blood clotting, leading to a stroke. Sadly, it wasnt something they caught before or during my pregnancy.
She almost died. She has had a few bumps but nothing she doesn’t fly over.
She is very smart, which I assume God blessed her with because of some motor delays she has had. She has been speaking full sentences since around a year old. At almost 2, she can say her ABCs all the way through, she knows 5 other songs fully and can say any word you say. She can spell her first name, she can count to 14 and when you talk to her, you actually can have a conversation with her. This has caused me to censor myself because after daddy heard her drop a toy and say “What the Hell,” I realized I need to watch my mouth. I had said it the day before when I was cleaning my youngest sons’ sheets and saw something on them that I couldn’t figure out what it was. She was measured at having a 36 month old's vocabulary at 15 months old. Her motor skills at 15 months measured at a 12 month old.
She attends physical therapy as well as occupational therapy every week. Both her and my youngest son. Along with exercises that I do with my youngest son, I do others with her. I spend around 2+ hours a day working with her and my son.
She is actually starting to walk, with the help of braces due to being low toned in her left side, which was effected by the stroke. There are different kinds of CP, my daughters is the most mild version.
She didn’t have the muscle tone to stand on her until around 14 months but made up for it mentally. She scooted though, very well, on her butt. She’s always found a way to do what everyone else was doing, just in her own special way.
I was always self conscious about what ignorant morons would say about it but you know what, I realize its their own insecurities in their children and/or themselves. If you're dumb enough to say something about an innocent child, you need help and you should go play in your nearest rush hour traffic. My daughter is beyond perfect and smarter than any kid I've ever met in my life. Her CP doesnt define her. It merely adds to her beauty, inside and out.
Her doctors and therapists say that by the time she starts school, you won't even be able to tell she went through anything or even has CP. Anyone and everyone that meets her, falls in love. She is walking, she is talking, she is a truly inspirational kiddo that I get to call mine.
She has Cerebral Palsy. That makes her no different. So I'll have a doctor rather than a track star one day. I think thats the way I would want it anyway.The only downfall with that is her drive doesn’t allow her to be okay with mediocrity. She wants to do everything just as good if not better than other kids and she does. She is beautiful and “normal.”
Whatever that means. My kid is just like you and yours. Remember that when you see someone who acts, looks, or is different than you. We all bleed red. We all breath in and out. We all have our own battles.
Here she is, my special cerebral palsy baby. It’s a very, very mild case of CP but we will take it and run with it. It only makes her better.
World, meet the cutest little girl. My baby. My Miracle. My daughter who has cerebral palsy.
Do you know much about cerebral palsy? Have you met anyone with cerebral palsy?
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About the Author
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- From: mamabee
- About Me: Hi, I'm Mama Bee. I'm from Colorado and I've lived here my entire life. I'm happily married to the most amazing guy and have been for going on 3 years. I am a stay at home mom with 2 step sons that live with my husband and I full time. C is 6 and J is 5. My husband, Daddy Bee, and I have a daughter together. K is 15 months and is a miracle baby. I would like to have another baby but due to some health issues I've been told I may not be able to. I believe that is why God gave me my daughter and our boys. My family has and will always come first. Marriage and motherhood are hard, but the most rewarding things I've ever been able to experience in my life. We have our ups and downs, we're not perfect but we try, we live, and we learn. We laugh when things get hard and we are thankful when things are easy. With 3 kids our life never seems boring. I look forward to sharing my family with you!
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Comments (25)
I smiled, reading your blog, because I have CP. I was born with a very severe case of it, actually - but by some miracle of God, I am fully mentally functioning and even excelling (with a BS in Psychology and an in-progress MA in Mental Health Counseling), though physically I have my limitations. I can walk - though I just recently had surgery to try and improve that, so I'm currently in a brace (haven't been in those since I was very young.) I wanted to comment because I applaud your enthusiasm for your daughter's abilities... she's your daughter first, and everything else pales in comparison. With a mom like you to cheer her on, I'm sure she'll have no problem becoming a doctor... she sounds very smart. Kudos to you for taking the bull by the horns ... and having great hopes for the future.
I love how you said "Her CP doesnt define her. It merely adds to her beauty, inside and out." I have found that with my daughter's disabilities. Thank you for sharing your sweet miracle with the world!
Beautiful! Thanks for sharing.
She is and always has been adorable.
Your daughter is absolutely adorable! It is so great that you don't look at her CP as something really bad in her life, but more something that will actually make her a stronger person. She sounds like an absolute doll.
On a side note, I have a friend whose baby had a stroke inutero. They did not know until he was born. His was quite severe though, as he was actually born with only half a brain. He lived for less than two months before passing away. She, also, did nothing that would have 'caused' the stroke and, as far as the doctors could tell, she didn't have any genetic things that should have caused it. Some medical things truly do remain mysteries. So glad your daughter came through this all so well.
oh lordy she is precious. what a beautiful child....
She's gorgeous. I love her little white dress with the yellow cardigan! Does cerebral palsy have something to do with paralysis of the muscles? My grandmother suffered a stroke and had Bells Palsy. Is that almost the same thing? I honestly have no idea what it is, but I will be researching it now. Thank you for raising my awareness.
I have a niece with CP. She was born prematurely, for no particular reason, and had brain swelling. She recieved a then experimental drug to stop the swelling that is used commonly today. The muscle in one her calves never fully relaxed and remain rigid (not sure what the terminology is) so she still has a slight limp. I can't recall it ever slowing her down...
She is almost 20 years old and on scholarship at a great college- an acedemic scholarship. She is a wonderful, beautiful, intellingent, compassionate girl and I don't think of her having CP, until instances like this.
Thank you for sharing your kiddo's story and raising awareness.
You do have a beautiful little girl. I don't know much about CP and don't know anyone who has it though.
I learnt about CP when i studying about Chris Brown, to me he is amazing. So does your daughter =]
look at her happy face! she is abolutely adorable.
God bless you.
I love this blog! As the first poster said, I have CP (right hemiparesis), and that may be why this stuck out so much! I am also a stroke survivor as well due to being born 14 weeks prematurely and weighing only 1 pound 14 ounces (and that was 19 years ago!). To the casual observer, I don't look like I'm any different - my body just wears out a lot easier (I'm in college and still nap every day!).
Check out www.brendonssmile.org; it's run by friends of mine whose son is an in-utero stroke survivor and their organization "Brendon's Smile..." is completely dedicated to raising awareness of pediatric stroke.
I would love to keep in touch - I have a CaringBridge/medical update site at www.caringbridge.org/visit/rachel324. Feel free to stop by and let me know you were there!
Thank you for posting this. I too have CP, also a mild version if it wasn't for my chair the outside wouldn't know any different. You're daughter is absolutely gorgeous! It is refreshing to see a post like this as sometimes people look at us with CP and automaticly assume we are less capable than others. Thank you again!
this is inspiring...I really think this is so beautiful. I've never known or have any kids with Cerebral Palsy, but I do know and am related to several children with other disorders and I have found that the best way to explain it to my children is to just ell them that htey are the same as us but they're just a little more special because they get to use different means of moving, walking, or ect. My son usually looks at them and goes O ok...and thats that.
She is absolutely beautiful.
i find it a bit ironic that you say it doesn't define her, but then proceed to emphasize how she doesn't really have it and you wouldn't even know by the time she enters school, it doesn't really seem that significant. maybe i'm just annoyed cause i thought i was going to read an interesting post about how your daughter overcomes her disability and instead it's just all about how much smarter your daughter is than everyone. i think especially at such a young age a lot of it is about luck. some babies get lucky in the intelligence department, some get lucky physically, and life is about working on what you do have while appreciating what you do.
Thank you do much for your story. My husband is a twin and they were born prematuraly. They both have CP.
My hubby's is very mild. He walks with a limp though, has balance issues at times, and has no deept peception.
His twin sister is not as fortnuate. She is confined to a wheelchair and has all sort of other medical problems.
Half the time I forget that my hubby walks with a limp or that he even has CP.
She's gorgeous.
That is a beautiful little girl!!!
Your comment about ignorant people making remarks reminds me of an incident with my children a few years back. I have one son and one daughter with club foot. One of the most common techniques for correction is putting the child in a long leg cast (hip high) - the younger the child, the better the prognosis. Toting around a 10 month old in a cast really brings on the insensitive comments, too. Everyone assumes that I've done something to him, or been negligent and allowed him to get seriously injured.
One day, my mother, daughter and I took my son (in his long cast, in the stroller) into a store at the mall. As soon as we entered, a sales lady said "Oh, what happened to him?!" (while glancing accusingly at me). Before I could say anything, his 3-year-old sister jumped in to defend us both. She plopped her little hands on her hips and said in her angriest little voice "Nothing HAPPENED to him! His footie's just a wittle bit cwooked, but we're fixing it!!" Mom and I couldn't help but laugh!
I've learned that having a special challenge to overcome has given my daughter a real sense of determination. She has an indomitable spirit that I know is due to her "footie". She just may be the strongest person I know. I feel so honored to be her mother.
One of my best friends has a twin. Her twin was born first and was actually born with severe CP as well as other motor and mental disabilities. But my goodness, you say hello to the girl and she thinks of some way to make fun of you. She has her only names for me, although she can't speak very well, she calls me a putz and a clutz. She can even recognize my voice from across the house and gets excited when I see her. She is twenty this year and will probably never live on her own, but I wouldn't have it any other way, she is I guess in a way, one of my best friends as well, not just her sister. Your daughter is beautiful and she will continue to strive, and she WILL some day make the best doctor, and it will probably be a pediatric doctor so she can help kids that have difficulities being "normal" ;) too.
Great post, she is so cute!
Your daughter is so pretty! Especially in that white and yellow dress <3
She is very fortunate to have a mild case of CP - most people I have known with CP have been in wheelchairs.
My daoughter is 17 months old, has mild CP (only legs) and it"ll be a while before she walks, if she does at all. What do I say to people who ask (and they always do, she is stunningly gorgeous) "Oh she must be walking already!
Just no, not yet?
I do not want to explain CP to everybody because she is my beautiful daughter and not a poor baby with CP. I don't want pity, she doesn't need it. What should I answer people in a year or two when she still doesn"t walk?
Give me a polite, short phrase. I don"t want to insult the good people I jut don"t want an invasion of privacy.
Thanks.
@azira - You tell them the truth - that your daughter has Cerebral Palsy. There is no shame in having Cerebral Palsy and there is very little pity offered about it these days, either. You should embrace her differences and be absolutely grateful that your daughter's CP is only mild. Stop worrying about what everyone else will think.
My daughter has severe Cerebral Palsy and not only will she never walk, she will also never talk, ride a bike, play with her toys, drive a car, get married or have children. She is also blind. I don't see pity for either myself or my daughter in the eyes of people me meet, but a desire to help and understand.
Not wanting her to be seen as 'a poor baby with CP' is probably not the right thing to say, but perhaps your choice of words was just poor.
Love your daughter for who she is and be grateful for the abilities she does have. And if people pity you, get over it. That's just life, and the more you try and hide your daughter's disability the more people WILL pity you.
@erinlouise -
A while ago you sent me some good words. I just read them today. I thank you from the bottom of my heart, I will process your words in my head and follow your advice.
Best to you and your daughter.
Azira.
@azira - Thanks for your reply - My daughter is ten now so I have had a lot more experience dealing with the way people react to her than you have had with your own daughter. The most important thing I have learned is that it isn't how other people see your daughter that matters, but how YOU see her. My daughter's disability is so severe, it is heartbreaking, but she is a very smart little girl who understands everything that is being said to her and around her. If she thought hat I was ashamed or embarrassed by her , she would grow up feeling the same way about herself. I treat my daughter just as I treat my two 'normal' children, and I love her just as much.
I'm sure you love your daughter unconditionally, and accepting her CP will come with time. Just be strong - and don't take to heart what others think or say, because in the end, none of it matters.
I recently started a website - www.helpustohelptenieka.webs.com/ - there is a lot of info on it about my own struggle with my my daughter's needs and the reaction of others to her disability. Please visit the site and read some of it, particularly the page titled 'Áfter the Diagnosis'. I didn't hold anything back whilst writing it. I wanted people to know how very precious my daughter is, but at the same time let them know how incredibly difficult life with a special needs child can often be.
I wish you all the best with your daughter. I'm sure you are a wonderful Mom who will do everything to ensure your little girl has the best start to life possible and achieves everything she is capable of achieving. And when you start to doubt yourself or her abilities, or feel embarrassed by her physical limitations, visit my website, look at the photos of my little girl and realise just how lucky you are.
Take Care - and all the very, very best. I will think about you from time to time and hope you are coping ok.