I hate cerebral palsy.
I hate not being normal.
I hate going to the playground.
I hate not being able to visit with the other mommies at the playground and play groups. I don't get to know the other mommies.
I hate it that all the mommies sit around and chat while I am being my daughter's legs.
I hate it that I don't like to go to play groups anymore.
I hate it that these same mommies will talk about cerebral palsy and "the little girl in KinderMusik who has cp and can't walk so she crawls around awkwardly", when they think I'm out of earshot.
I hate that my 3 1/2 year old daughter sits in the stroller while I help my other two kids go down the fireman pole.
I hate that when my daughter requests "I want to slide too" that I can't let her because the slide is too tall and I need someone to help me.
I hate it that I leave her in the swing too long sometimes, because it's easier.
I hate it that some mommies with 2 perfectly normal children can't find time to do anything but talk about how smart and athletic they are. (I know I'm kind of harsh on that one)
I hate it that I can't find time to do anything because I'm always taking my daughter to therapies and doctors.
I hate it that all our money goes toward therapies and procedures rather than dance lessons and soccer camp.
I hate it that I can't do more with my other two kids because I am my daughter's legs.
I hate it that I hate it.
What do you hate?
40 comments:
I hate it when people say insensitive things like "well, at least you only have one to chase after".
I hate it when my niece (who's only 8) always chooses to play with Daniel and not Ben.
I hate it when my mom says "he's going to be fine, he's just a bit delayed".
I could go on and on. Great post Jacolyn. You hit the nail on the head with this one.
I LOVE YOU & GRACE SOOOOO MUCH!!!!
Cary Anne, Those are good...I also hate it when my niece brings presents for and only wants to play with Sophie and not for/with Grace. I even had to say something one time.
I also hate it when people say "it's a good thing Grace likes book" REALLY?!
I hate that today at Elizabeth's first gymnastics class her teacher after I explained she needs help physically talked to Elizabeth likes she was dumb. I hate that we had to place Elizabeth in a gym class where she is twice the kids age and I hate that that they can do twice as much as her. I also hate that the other mothers sit in the bleachers chatting as I help my daughter keep up. I really hate the fact that my daughter is probably being discussed by strangers as I am helping her.
I have had one of those days too today. It can be so tiring.
Oh gosh.....don't even get me started!
I'll just say this one..I hate that I get jealous that my daughters son does more than my son who is twice his age. I hate that I have to remind people to acknowledge Daniel too, just because he doesnt talk doesn't mean he isn't waiting for you to say hello to him too.
Great Post!
I hate it when my friends cock their heads to the side to ask about my daughter -- we call it the sympathy look.
I hate that people say how lucky Carly is to have me for a mom because they couldnt do what I do...WTH?!? Like I raised my hand and asked for this!
I hate that my child in college has to work to help pay for school because I have to send his 3 year old sister to a special school to learn how to stand and hopefully walk.
I hate that the older siblings are jealous of their little sister for the attention she gets but I hate that they also feel guilty for even thinking that way - the inner struggles of the other two cant be easy.
I hate that Carly cant see which makes it even more difficult for her and her struggles.
I hate having to watch my 10 year old stepdaughter in her dance recital and hearing my mother in law say "maybe some day they will have special classes for Carly"
I hate having a mother in law that posts pictures all over the internet of the 10 year old dancing.
I will say that I LOVE what my daughter has taught me.
Damn. You made me cry. I hate all of those same things...
I hate it that there are people who think that we should be happy now and that our life without Loren should be so much better than it was with him.
I hate it that people cannot put themselves in our shoes. Really, all they need to do is think...."If this were my child, what would I want other people to do?"
My kids have two very talented cousins. And I cannot help but get irritated at how it is so easy to praise kids who don't have any limitations in achieving anything. But that my son's achievements that were reached with blood, sweat and tears never even registered.
Great post.
Thank you so much, Jacolyn, not just for speaking up like this yourself but also for providing a platform for others to do the same.
I hope that I will have helped bring what you all have said to a little wider attention:
www.conductive-world.info
Best wishes,
Andrew Sutton
Maybe you didn't see my comment in a previous blog. I am part of a set of BBG triplets and I have spastic diplegia cerebral palsy. I feel for you and Grace. :( It must be tough being a mom of a kid with CP. I try and stop to think about how my mom feels when I go through a challenging time in my life--sometimes it's tough, but your post has given me insight.
I'm inspired to make my own hate list too. Haha. It's a good way to vent.
1. I hate it when kids at school ask why I walk "weird".
2. I hate it when kids ask me when I will "get better". Maybe never, but I can't say that to their face without crying.
3. I hate it when kids talk to me slowly like I'm stupid, just because I have an awkward gait. I may "walk weird", but other than that, I'm just the same as everyone else.
4. I hate PT, doctors appointments, braces, and anything else that makes me "different".
5. I hate it when people try to help me too much. I might need assistance in some things, but I want to see if I can do it myself first. I know people are just trying to be nice, but I just like my independence. I can do most things, it just takes me a little longer!
6. I hate watching gym class or sitting out of things that I CAN'T do, watching people laugh and have fun without me.
7. I hate it when people say things about me like "cripple" when they think I can't hear them.
But I love:
1. Proving people wrong about things I CAN do.
2. Being an inspiration to people.
3. Improving. One of my happiest days was when I finally learned to ride a two-wheeler at age nine. I had ridden my bike (with training wheels) home from the bus stop every day for more than a year, and it was wonderful when I finally could take those extra wheels off.
4. Facing challenges.
I hate it that you have to feel like this. And I am sorry.
Out of all the posts, I like "Anonymous" response best. She must be an angel just like our Gracie
Hello Anonymous! I am SO glad you found my blog! Thank you for sharing you wonderful attitude with us. Do you have a blog? I would love to correspond. My email address is jlieck@sbcglobal,net
I hope Grace grows up to be just like you!
I hate that I can't spend more time with Grace. I love playing with her and hearing her laugh. Especially when she wants to do something again. Even though she may have worn me out, I always do whatever it is one more time just for her smile. I hate that we even have to hate, it's not fun, but that's just the way it is.
I don't have a blog, but I will keep reading your posts & I'll comment sometimes. :) I will send you an email now and again too!
Grace reminds me so much of myself when I was four, I've been reading through your posts about her and I have to smile. The one about Grace and her "boyfriends"--I cracked up over that one because there was a boy who wanted me to be his "girlfriend" when I was her age too. And it's funny that Grace doesn't like her walker because I hated mine as well. I actually threw it down and told my parents that I didn't want it. I learned to walk without a walker, I was so stubborn! I'm 15 now, and it's great to read about someone who's a triplet and also has CP--I was so surprised to stumble across this blog!
Remind Grace never to give up, and that she can do whatever she wants if she tries hard enough! My parents were told by doctors I'd never walk. I had a surgery at 2 1/2 that helped reduce the tightness in my legs, and that helped tremendously...and I DID learn to walk. I'm sure Grace will, too.
Having CP is hard sometimes. Just because of the way I walk, people judge me. In first grade, my teachers thought I was stupid until I showed them otherwise. Even today, that still happens every year. It's frustrating, how people, even adults, are so judgmental. A lot of people are surprised to see my name on the high honor roll, as if I'm stupid or something. I hate that--just because I walk differently than most people, it doesn't mean that I have a low intelligence or something. I just have different challenges, different goals (still working on learning how to jump rope. Haha...) than my classmates.
Anyway, sorry to go off topic so much. I guess I just felt like venting. It's not often I find someone in a similar situation as myself. In all, sometimes I'm even grateful for my CP. Overcoming my challenges has helped me to become a more mature and hard-working person. I bet your Grace will be the same way.
I'll keep reading your blog! :) Thanks for responding to my post. My heart goes out to you and Grace; I know what it's like, at least to be the kid with CP.
I love the winks we get from God Jacolyn! Anonymous is a blessing.
Love and big hugs to you my sweet friend.
Marcy
I am parents (CP child for 14 years) I only hate one thing..the CP poem "Welcome to Holland"
Do you know the song "Wake Up Susy" ???
Ugh. I hate it all too, and some days, more so than others. Going out in public has to be the worst of it all, though. In the comfort of our home, it's easy to forget how different Hannah is. As soon as we go out, all of the attention/stares/comments are ugly reminders. I would love to be able to be out as a family one day and not have people look at us in "that way." It sucks!
Hugs to you.
Hello again! This is the third time I've commented on this blog posting. I couldn't resist, though. I guess I just have a lot to say! :)
I noticed in a previous posting you had stated, "It made me so sad that Grace could not run on her own. I wondered if she was sad. I wondered...even though she was laughing, if she was holding back the same tears I was."
Maybe it would help if you knew that I don't think she is sad inside. When I was younger, I used to sit and watch my brothers run through the house, and I would laugh and squeal as they'd pass by me. I remember, it was fun to watch them run, and I was genuinely happy. Now and then, I get a little frustrated if I'm not able to do things, but I'm not good at holding back tears. When I feel like crying, I do cry.
I'm sorry to post so much, I hope you don't mind!
Oh PLEASE keep commenting!! I have so many questions for you so please keep in touch and I love to know you thoughts and feeling on these things.
I will. Feel free to ask questions, I'll do my best to answer any that you have. :)
If you'd like my email address, I can give it to you, or I'll send you an email, whichever you prefer!
It was only when I started to work for a charity which helped the physically disabled that I began to understand what disability and all its ramifications meant. Those that have to live with it everyday in this apparently uncaring world really do have a tough time and being able to let out frustrations and 'hates' in this manner must help tremendously. Good luck to all those in this position.
I hate that I'm not as supportive as I could be. I hate that you have to struggle with this, for the most part, all by yourself. I hate that I can't identify with what you're going through.
But I love that God has blessed the world by putting Grace in it. I love that your family has taught me what love is. And I love you.
Jacolyn,
I sent you an email. :) My email address has to do with kitties, so if you see one like that, that's me!
Oh Jacolyn, I hate all those things too!
And, I hate it when his preschool teachers suggest I might benefit from taking parenting classes. I really hate that!
I loved reading all these comments. Anonymous, you are an inspiration to us all!
Hi Anonymous, I never got your email. Did you send it to jlieck@sbcglobal.net? Do you mind trying again?
Thanks!
Sometimes, I hate to be a conductor, sometimes, I love to be a conductor... this was and is my choice. I hear you guys!
Jacolyn, I sent it again. Hope it works this time! If not, I saved a draft of the email so I can quickly resend it. Not sure why it didn't work the first time, maybe it was a problem with my email.
I hate that any trip to a playground is a total workout for me and my husband instead of just letting Clayton run free.
And I hate all this other stuff that you posted as well!!
I love that by posts like this and all the others, even though I have no connection to CP or disabilities whatsoever, I feel like I am learning a lot and know better how to be human.
Thank you for your transparency so we can learn from you. I pray it will pay off for you and others directly and indirectly!
Wow - where to start!?! Jacolyn, I'm so there with you. I hate it when my close friends say something stupid and insensitive like, "I knew a girl in high school who had CP." I know they mean well, but I still have hopes that Sarah won't be the token child with a disability that people remember for the rest of their life as the "different" one.
I stopped going to play groups a long time ago b/c everyone always wanted to meet at the park or the play area at the mall or at Chick-Fil-A so the kids could play on the equipment. What's the point of the play group if Sarah just gets left behind by the other kids and I don't get to visit with the other moms?
I hate feeling so excited about Sarah's progress and then seeing a typical 4 year old and realizing just how different she is.
I LOVE that I can now watch Megan do physical things with ease, simple things like sit and put shaptes in a shape sorter and just marvel at the fact that she can sit and that her muscles are so loose. Things I would have missed or taken for granted otherwise...
To Anonymous...THANK YOU SO MUCH for posting!! It is such a blessing to see your insight into living with CP. I too hope Sarah turns out just like you. I know that God has allowed this in Sarah's life b/c He has a wonderful plan and ministry for her, but it is hard as her mom to watch everything be a struggle for her and wonder what her future holds. I don't always know how she feels so your insight is precious! Thanks!
A little late but I am going to chime in.
I hate that my son can't talk
I hate it when people refer to him as a baby, and I don't know why they do it because he is 53lbs and 45 inches
I hate that he has to still wear a bib because he drools.
I hate the looks I or (he) gets when he is in his wheelchair.
I really hate having to fight for stuff that he needs
I hate, hate finding shoes to fit his AFO's
There is more but I will leave it at that. Also want to say that it is great that anonymous is reaching out to share that our kids will be teenagers someday and they will have the fight and determination that she has.
I HATE that my son is non-verbal.
I HATE having to guess his wants and needs.
I HATE having to make decisions about putting my son under for another surgery. Am I doing the right thing?
I HATE that people stare at my son like a piece of barb-b-que chicken fresh off the grill.
I best stop myself there. The list goes on. Thanks for the post. I totally relate.
I'm right there with you.
J
Wow. You said it. Here are my two cents. When I'm in public with my gorgeous Bambino Boy, and some fool's child stops and stands and stares; I turn to my son and say,
"Oh, Blue, look. That poor little boy can't talk or smile." (Blue always laughs)
When people ask me that asinine question, "What's wrong with him?" I generally say that he has a rare disorder. He's the only perfect person in the world. It's very hard to deal with. It's like living with Jesus.
If someone is REALLY caustic and has the manners of an arachnid, I say,"If you're disabled, you can't really change that; but if you're an ***hole, you could stop right now."
That would be a few of things in my "I hate it" file. I hate it too, but I am blessed in such a way as to not have other kids. I also think this is NOT a blessing at the same time. Point being, you're not alone, even though you feel like it all the time. Your remarks (and thanks Andrew Sutton for calling attention to them) have helped me to feel like I am not so alone.
James Forliti, A proud Minnesotan displaced to British Columbia for almost twenty years now. Y'all take care.
As someone who has Cerebral Palsy:
I hate it that you're complaining about being your daughter's legs and not having time for yourself and to hang out with other moms.
At least you're not the one with CP, it could be worse for you. At least you have the ablity to be someone's legs and not having to have someone else be your legs.
Dear Anonymous, Thank you!
Sorry, I didn't mean to sound harsh, it's just that I would give anything to be someone else's legs, and not to have been on the recieving end all my life.
I'm glad you gave your input. I often wonder how Grace feels.
I hate feeling so depressed and sad over things that I consider suicide or running away. I know I'd never go through with either because I'd leave my husband to deal with all of this alone and I love my child.
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