Aren't emotions wild? They have such a wide range from unpleasant emotions to the very best feeling in the world. Anger, fear, embarrassment, frustration, worry, exhilaration, empathy, joy, excitement, happiness ... I think I covered a majority of the available emotions under the "feeling" section of your Facebook status. As tedious as they feel at times, I still can't help but think that emotions are a vital part of the human experience.
The last year has been what one might call a "slip n slide" of emotions. I have honestly felt all of the above, often on the same day. Aren't I lucky. I was just telling my husband tonight on our way home from a trip to Toledo that I care deeply. About everything. In a world where we are forebode to care what others think, I do. I do care if you think I'm annoying, absurd, obnoxious, pretentious, rude, negative, nasty, unethical, unworthy, ungrateful or anything else. I care. I care about my family. I care about my friends. I care about strangers and stray dogs. It's something I can remember from a very early time. I used to feel bad for toys ... before Toy Story made us realize that toys really do come to life and love us right back. I once went around my neighborhood with my best friend performing funeral services for various dead animals because we felt so bad for them. I'm completely full of feeling.
One of the battles I think that many women can relate to is the feeling of not being enough. There is at least one other woman in our life that has this going on but manages to still do that, while handling this and still being able to enjoy that. We see her and think, why isn't that me? What am I doing with and in my life that makes me not her? Enter in extreme doses of doubt and any feelings of self loathing and you got yourself a good ole case of comparison syndrome. A totally made up diagnosis where women feel uncharacteristically compelled to compare and ultimately judge ourselves based on others. I feel that a lot of negative peer talk is rooted in feelings of inadequacy. We are jealous of what we see and do not have therefor if we degrade we will inevitably use humor to diffuse said feelings and ultimately make ourselves think we don't care. But we do. I do.
Recently I have discovered that I often feel embarrassed about Hailey. In a world where we are to celebrate differences, but abnormal is weird. How does one have "identical" twins in which one is "normal" and one is not? It's not that I don't love her ... You obviously know that. It's just that I hate explaining to people why she isn't walking. It's embarrassing. When perfect strangers assume that she and Hannah are the very best of friends and laugh and frolic together, I actually get embarrassed to say she's special needs. Why do I get embarrassed? Oh boy you tell me. It's taken me some time to even admit to myself that that's what I was feeling, let alone be able to even fathom why. But here's my theory ... (because I'm just full of em!) I'm embarrassed because I'm frustrated I don't have answers. I can't explain why. Or that it's okay.
Rewind. Now we all know based on knowing me and previous blog posts that I'm not the brightest star in the sky. I won't pretend to be more intelligent than I am. I try. I always have. But I struggle with scholastics. Which is why I believe I have a deep rooted desire to know things. If I have questions, I get exceedingly frustrated if I can't or don't get answers. Or when things don't make sense. That is one BIG reason why I struggle with Hailey's diagnosis. There are no answers. Not one. And there never will be. *Blank Stare* I know very little about what is happening in her body and every professional that you will speak too has the same reply to every question asked: "There are too many variables." Is she mild enough? Did we intervene early enough? Do I work with her enough at home? Will she need medication? How will she respond? And on and on and on and on. These are questions that are literally impossible to answer, but must be answered in order to provide any insight into her future whatsoever. This is not an area where I strive.
A few things to know about me, since I opened that door. There are a lot of things I do well. I enjoy public speaking. I have very little fear of speaking and or making a fool of myself in front of others. I could literally write and entire post about all the preposterous things I've done predominately after 6th grade to bring humor to others. I wanted to be the funny one in the group. I enjoyed and still do making people laugh. It puts people at ease. Makes them feel better, even if it's just for a moment. And studies by science have proven that laughter significantly improves your health. It can lower blood pressure and releases endorphins and dopamine that light up the pleasure centers of the brain. A lot of truth is said in adage! Laughter usually is the very best medicine we can give ourselves. I love my kids. No one can love my kids the way I do. I care greatly for and about others, even though I never have mastered showing it. I'd like to think that I have a big heart and feel that even when unexpressed I am very compassionate. I'm also passionate nearly to a fault. I have deep rooted opinions and often am not afraid to express them!
On the flip side there are things that I struggle with. One of them is opening up on a deep level to perfect strangers in person. It's one thing to write crazy thoughts and feelings behind a keyboard and a screen. It's another thing to sit and tell someone your soul face to face without even knowing their last name. I've been asked on several occasions if I have sought a support group and this is the reason I have not and may not. It's a level of open that I'm not sure I'll ever be ready to face. Especially since it is one I would have to pursue by myself. Which brings me to my next ungift, doing things successfully alone. Everyone wants to think they are Super Hero level and some are but many aren't. It's very difficult to do a lot masterfully single-handedly. (What is that? Single handedly. All one word? Two words? Hyphen? What?) I need help. I'm not good at asking for it, although improvements have been made in this area, but I need it. I don't like not knowing. You can ask my husband, I hate surprises. I actually do want to know the end of that movie! Because I guarantee that what you describe and how I picture it in my head will be entirely different than reality. And if your spoiler is the kid dies in the end ... I don't want to see it anyway and you just saved me 2 hours of my life. Win-Win. I'm also not timely. I have taken procrastination and gone pro with it. I put things off til the very last second or sometimes never get around to it at all. Like cleaning my basement, organizing kids stuff, or writing several hundred Thank Yous owed. (OY!)
Which is why I get embarrassed. I'm imperfect and unknowing. So far I have only encountered one "Why?" in the wild and it was from a child so I could simply and easily answer with only a slight eye misting. The day an adult asks me what happened, I may run to the nearest hole and hide. Maybe forever, I don't really know. Because I don't know. I don't know how it happened and I don't know why it happened. It just did. I recently talked to a long time friend of mine who is a very practical and pragmatic MD. I'm so proud of her. You have no idea how hard she has worked the majority of her life to become a doctor to help people. It amazes me. But anyway, I was asking questions hoping that she could give me some outside perspective maybe a little more objectively. She ultimately told me that I need to come to grips with the fact that I will most likely never know. And that she hoped I could come to peace with it. I truthfully told her I don't think I ever will be at peace. Oh looky there ... another unknown! HA! But it is an unsettling feeling - unknown. Mystery. Clueless. It's a dark place I often find my mind wandering down. The slippery slope of what-if worry. But I do hope and think that someday I can accept it. There is a difference to me between not caring and accepting. You can accept something you don't like, but you can't not care about something you do care about. Okay maybe that sounded better in my head. (Feel free to cringe deeply about my double negative there too grammar police!) But I'm leaving it because it is the truth. I will never feel peace about Hailey having CP - I don't think. It sucks. But I hope that at some point I can accept it and proceed with fervor instead of tears. I'm not there yet, still have a couple more boxes of tissues to plow through and maybe a few more blog posts, but I think I can reach acceptance. Someday.
The last thing you may not know about me is I'm not a "good girl" and what I mean by that is I don't or haven't done all the things girly girls do. When I picked out my wedding dress it was; "Yeah I love this one, I'm getting it." Not "This is it!! This is the ONE!" I wasn't nervous on my wedding day ... I was Monica Gellar all the way ... "I'M GETTING MARRIED TODAY!" I don't Pinterest. Like, do not have Pinterest. At all. No account. It's just not who I am. BUT. I did know I was pregnant before I took the test both times. I did know Hailey was special needs at 3 months old. How? I have absolutely no idea. But I did. (Kinda like how I knew LeBron was coming back to Cleveland when he donated all that money to Ohio State. #Ploy) And with that, I know that I will never know God's plan for this while on earth. YUCK. Hate saying that as much as I hate saying Cerebral Palsy. Bleh. I don't get to know gosh darn it! Which is like, globally unfair! Totally ... Okay Christie no one else has seen Clueless in the last 10 years, they will not get that reference you sleep deprived ding dong. I told that to someone this weekend and they said "well you don't know that." But I do. I'll find out His plan when and if I make it to Heaven, but not while I'm here. It stinks, but I hope that at some point I can accept that too. I know there is a plan for this, I just don't ever get to have the privilege of being on that memo. Don't think I'm being a negative Nancy either. It's not negative if that's the way it is.
Finally the best part. Well, besides the end of this post. Two weeks ago Hailey's Help Me Grow (Ohio based at home therapy resource) administered a Batelle test for Hailey for reevaluation. It's a standard test which demonstrates various skills and or abilities that assess need for intervention. Hope you can stick with me here, it's a lot of numbers, but it's REALLY good. The test has 5 areas: Adaptive skills, Personal/Social skills, Cognitive skills, Communication skills (Which they divide into Receptive and Expressive communication) and Motor skills (Also divided into Fine and Gross motor skills). In the first 3 categories you need a 77 or lower to show a need for intervention. The last 2 (Communication and Motor) you need a 5 or lower. Hailey will continue therapy based solely on her diagnosis, but the test is mandatory. I asked her PT how her scores were based on average kids and here are the results; Adaptive Hailey scored a 95 (37th percentile, but her PT said that is a bit skewed think of it more between 25-75% so close to average), Pers/Soc 118, Cognitive 113 - both around the 80th percentile. She's vastly above average in cognition! WHAT?! Receptive Comm was a 12 (75th percentile), Expressive was a 14 (91st percentile) Hailey can tell us what and how she feels ... hmmmm wonder where she gets that?! Fine motor was a 13 (84th percentile) and Gross motor was a 1 (Less than 1%). This is due to the fact that she cannot pull to stand independently, crawl, walk, stand etc. So I was neither surprised nor upset about the last one. So what does all that mean? Well ... it means that if it weren't for her diagnosis, Hailey would only show a need for intervention in 1 area. It means that except for 2 areas (one with exception) she is WELL above average. It means Hailey is smart. It means she's not incapable. It means my girl is AWESOME. And that emotion right there, that's one they haven't named yet. I sincerely hope that this is a road we can stay on. Because that doesn't embarrass me. I wouldn't be embarrassed to tell people that with CP Hailey is brilliant. With damage to her brain, she's smart. So so smart and I have the test scores to prove it! I think that should be a bumper sticker.
When the day is done, while I'm not winning awards, or moving mountains, or saving the world like so many people I know in my life, I'd like to think I'm doing the very best I can with what I've got. I am damaged and I am flawed and I fail and sometimes I even stand tall. But I try. I still try. When I don't want to, when I don't like to, when I know it will end in failure, I try. Because it's all I can do. I was dealt two wild cards. Twins. And special needs. Woah mama. Not planned and unprepared. I'm doing what I can and caring all the way. Because if I didn't care, I wouldn't try. And if I didn't try I would never get to move forward. Trudge ahead. However slow and sloppy it may be. I have many dark days. On those days, I'm still trying, it's just not as successful. Failure and I are on a first name basis. But yet I have not given up. And I'd kinda like to give myself a tiny little pat on the back. For all my pity parties and self doubt, for my constant comparison trap, for my incessant feelings of inadequacy that I fight like hell against every day, I'd like to think that trying my best isn't so bad. My life isn't ideal. Not how I'd like it to be or how I envisioned, but still here we are. Trying. And it may not be enough, but maybe it is.
Love you so much.
The last year has been what one might call a "slip n slide" of emotions. I have honestly felt all of the above, often on the same day. Aren't I lucky. I was just telling my husband tonight on our way home from a trip to Toledo that I care deeply. About everything. In a world where we are forebode to care what others think, I do. I do care if you think I'm annoying, absurd, obnoxious, pretentious, rude, negative, nasty, unethical, unworthy, ungrateful or anything else. I care. I care about my family. I care about my friends. I care about strangers and stray dogs. It's something I can remember from a very early time. I used to feel bad for toys ... before Toy Story made us realize that toys really do come to life and love us right back. I once went around my neighborhood with my best friend performing funeral services for various dead animals because we felt so bad for them. I'm completely full of feeling.
One of the battles I think that many women can relate to is the feeling of not being enough. There is at least one other woman in our life that has this going on but manages to still do that, while handling this and still being able to enjoy that. We see her and think, why isn't that me? What am I doing with and in my life that makes me not her? Enter in extreme doses of doubt and any feelings of self loathing and you got yourself a good ole case of comparison syndrome. A totally made up diagnosis where women feel uncharacteristically compelled to compare and ultimately judge ourselves based on others. I feel that a lot of negative peer talk is rooted in feelings of inadequacy. We are jealous of what we see and do not have therefor if we degrade we will inevitably use humor to diffuse said feelings and ultimately make ourselves think we don't care. But we do. I do.
Recently I have discovered that I often feel embarrassed about Hailey. In a world where we are to celebrate differences, but abnormal is weird. How does one have "identical" twins in which one is "normal" and one is not? It's not that I don't love her ... You obviously know that. It's just that I hate explaining to people why she isn't walking. It's embarrassing. When perfect strangers assume that she and Hannah are the very best of friends and laugh and frolic together, I actually get embarrassed to say she's special needs. Why do I get embarrassed? Oh boy you tell me. It's taken me some time to even admit to myself that that's what I was feeling, let alone be able to even fathom why. But here's my theory ... (because I'm just full of em!) I'm embarrassed because I'm frustrated I don't have answers. I can't explain why. Or that it's okay.
Rewind. Now we all know based on knowing me and previous blog posts that I'm not the brightest star in the sky. I won't pretend to be more intelligent than I am. I try. I always have. But I struggle with scholastics. Which is why I believe I have a deep rooted desire to know things. If I have questions, I get exceedingly frustrated if I can't or don't get answers. Or when things don't make sense. That is one BIG reason why I struggle with Hailey's diagnosis. There are no answers. Not one. And there never will be. *Blank Stare* I know very little about what is happening in her body and every professional that you will speak too has the same reply to every question asked: "There are too many variables." Is she mild enough? Did we intervene early enough? Do I work with her enough at home? Will she need medication? How will she respond? And on and on and on and on. These are questions that are literally impossible to answer, but must be answered in order to provide any insight into her future whatsoever. This is not an area where I strive.
A few things to know about me, since I opened that door. There are a lot of things I do well. I enjoy public speaking. I have very little fear of speaking and or making a fool of myself in front of others. I could literally write and entire post about all the preposterous things I've done predominately after 6th grade to bring humor to others. I wanted to be the funny one in the group. I enjoyed and still do making people laugh. It puts people at ease. Makes them feel better, even if it's just for a moment. And studies by science have proven that laughter significantly improves your health. It can lower blood pressure and releases endorphins and dopamine that light up the pleasure centers of the brain. A lot of truth is said in adage! Laughter usually is the very best medicine we can give ourselves. I love my kids. No one can love my kids the way I do. I care greatly for and about others, even though I never have mastered showing it. I'd like to think that I have a big heart and feel that even when unexpressed I am very compassionate. I'm also passionate nearly to a fault. I have deep rooted opinions and often am not afraid to express them!
On the flip side there are things that I struggle with. One of them is opening up on a deep level to perfect strangers in person. It's one thing to write crazy thoughts and feelings behind a keyboard and a screen. It's another thing to sit and tell someone your soul face to face without even knowing their last name. I've been asked on several occasions if I have sought a support group and this is the reason I have not and may not. It's a level of open that I'm not sure I'll ever be ready to face. Especially since it is one I would have to pursue by myself. Which brings me to my next ungift, doing things successfully alone. Everyone wants to think they are Super Hero level and some are but many aren't. It's very difficult to do a lot masterfully single-handedly. (What is that? Single handedly. All one word? Two words? Hyphen? What?) I need help. I'm not good at asking for it, although improvements have been made in this area, but I need it. I don't like not knowing. You can ask my husband, I hate surprises. I actually do want to know the end of that movie! Because I guarantee that what you describe and how I picture it in my head will be entirely different than reality. And if your spoiler is the kid dies in the end ... I don't want to see it anyway and you just saved me 2 hours of my life. Win-Win. I'm also not timely. I have taken procrastination and gone pro with it. I put things off til the very last second or sometimes never get around to it at all. Like cleaning my basement, organizing kids stuff, or writing several hundred Thank Yous owed. (OY!)
Which is why I get embarrassed. I'm imperfect and unknowing. So far I have only encountered one "Why?" in the wild and it was from a child so I could simply and easily answer with only a slight eye misting. The day an adult asks me what happened, I may run to the nearest hole and hide. Maybe forever, I don't really know. Because I don't know. I don't know how it happened and I don't know why it happened. It just did. I recently talked to a long time friend of mine who is a very practical and pragmatic MD. I'm so proud of her. You have no idea how hard she has worked the majority of her life to become a doctor to help people. It amazes me. But anyway, I was asking questions hoping that she could give me some outside perspective maybe a little more objectively. She ultimately told me that I need to come to grips with the fact that I will most likely never know. And that she hoped I could come to peace with it. I truthfully told her I don't think I ever will be at peace. Oh looky there ... another unknown! HA! But it is an unsettling feeling - unknown. Mystery. Clueless. It's a dark place I often find my mind wandering down. The slippery slope of what-if worry. But I do hope and think that someday I can accept it. There is a difference to me between not caring and accepting. You can accept something you don't like, but you can't not care about something you do care about. Okay maybe that sounded better in my head. (Feel free to cringe deeply about my double negative there too grammar police!) But I'm leaving it because it is the truth. I will never feel peace about Hailey having CP - I don't think. It sucks. But I hope that at some point I can accept it and proceed with fervor instead of tears. I'm not there yet, still have a couple more boxes of tissues to plow through and maybe a few more blog posts, but I think I can reach acceptance. Someday.
The last thing you may not know about me is I'm not a "good girl" and what I mean by that is I don't or haven't done all the things girly girls do. When I picked out my wedding dress it was; "Yeah I love this one, I'm getting it." Not "This is it!! This is the ONE!" I wasn't nervous on my wedding day ... I was Monica Gellar all the way ... "I'M GETTING MARRIED TODAY!" I don't Pinterest. Like, do not have Pinterest. At all. No account. It's just not who I am. BUT. I did know I was pregnant before I took the test both times. I did know Hailey was special needs at 3 months old. How? I have absolutely no idea. But I did. (Kinda like how I knew LeBron was coming back to Cleveland when he donated all that money to Ohio State. #Ploy) And with that, I know that I will never know God's plan for this while on earth. YUCK. Hate saying that as much as I hate saying Cerebral Palsy. Bleh. I don't get to know gosh darn it! Which is like, globally unfair! Totally ... Okay Christie no one else has seen Clueless in the last 10 years, they will not get that reference you sleep deprived ding dong. I told that to someone this weekend and they said "well you don't know that." But I do. I'll find out His plan when and if I make it to Heaven, but not while I'm here. It stinks, but I hope that at some point I can accept that too. I know there is a plan for this, I just don't ever get to have the privilege of being on that memo. Don't think I'm being a negative Nancy either. It's not negative if that's the way it is.
Finally the best part. Well, besides the end of this post. Two weeks ago Hailey's Help Me Grow (Ohio based at home therapy resource) administered a Batelle test for Hailey for reevaluation. It's a standard test which demonstrates various skills and or abilities that assess need for intervention. Hope you can stick with me here, it's a lot of numbers, but it's REALLY good. The test has 5 areas: Adaptive skills, Personal/Social skills, Cognitive skills, Communication skills (Which they divide into Receptive and Expressive communication) and Motor skills (Also divided into Fine and Gross motor skills). In the first 3 categories you need a 77 or lower to show a need for intervention. The last 2 (Communication and Motor) you need a 5 or lower. Hailey will continue therapy based solely on her diagnosis, but the test is mandatory. I asked her PT how her scores were based on average kids and here are the results; Adaptive Hailey scored a 95 (37th percentile, but her PT said that is a bit skewed think of it more between 25-75% so close to average), Pers/Soc 118, Cognitive 113 - both around the 80th percentile. She's vastly above average in cognition! WHAT?! Receptive Comm was a 12 (75th percentile), Expressive was a 14 (91st percentile) Hailey can tell us what and how she feels ... hmmmm wonder where she gets that?! Fine motor was a 13 (84th percentile) and Gross motor was a 1 (Less than 1%). This is due to the fact that she cannot pull to stand independently, crawl, walk, stand etc. So I was neither surprised nor upset about the last one. So what does all that mean? Well ... it means that if it weren't for her diagnosis, Hailey would only show a need for intervention in 1 area. It means that except for 2 areas (one with exception) she is WELL above average. It means Hailey is smart. It means she's not incapable. It means my girl is AWESOME. And that emotion right there, that's one they haven't named yet. I sincerely hope that this is a road we can stay on. Because that doesn't embarrass me. I wouldn't be embarrassed to tell people that with CP Hailey is brilliant. With damage to her brain, she's smart. So so smart and I have the test scores to prove it! I think that should be a bumper sticker.
When the day is done, while I'm not winning awards, or moving mountains, or saving the world like so many people I know in my life, I'd like to think I'm doing the very best I can with what I've got. I am damaged and I am flawed and I fail and sometimes I even stand tall. But I try. I still try. When I don't want to, when I don't like to, when I know it will end in failure, I try. Because it's all I can do. I was dealt two wild cards. Twins. And special needs. Woah mama. Not planned and unprepared. I'm doing what I can and caring all the way. Because if I didn't care, I wouldn't try. And if I didn't try I would never get to move forward. Trudge ahead. However slow and sloppy it may be. I have many dark days. On those days, I'm still trying, it's just not as successful. Failure and I are on a first name basis. But yet I have not given up. And I'd kinda like to give myself a tiny little pat on the back. For all my pity parties and self doubt, for my constant comparison trap, for my incessant feelings of inadequacy that I fight like hell against every day, I'd like to think that trying my best isn't so bad. My life isn't ideal. Not how I'd like it to be or how I envisioned, but still here we are. Trying. And it may not be enough, but maybe it is.
Love you so much.
