Ignorance is something we all have to deal with on a daily basis. I understand i cannot change how the world views things. i am fully aware that throughout the course of Khloe's life, we will face many closed minded, ignorant individuals. I only wish i could make the world aware of the reaction you will get out of this little lady when your ignorance hurts one of my children. i have no patience for stupidity.
Today during one of my normal daily conversations, someone said something that really, and i mean REALLY offended me. much to my surprise people that i was once friends with, who have not had the privilege of meeting my little Khloe, were inquiring about her condition. which my first thought was how amazing this was!!! people want to know more about CP!!! spread awareness...thats NEVER a bad thing..right?right! well sadly the words that followed were like a dagger to the heart...it turns out this person (who shall remain nameless...because Khloe has a very protective slue of people who may not chose to be so forgiving..especially her "g" (my mom has taken the name G instead of grandma)) was also wondering if she looked "normal"......
im sorry.."normal" ???? im really trying not to curse in my blog. what is normal? i have never been so hurt! not just for Khloe, but for every person that the world expects to look a certain way. my heart broke in that moment for each and every individual who will ever have to hear such a stupid and heartless remark. normal??? in this house...normal is overrated. who wants to be normal?? its BORING!
my answer...because i am certain this person will read this post.. NO! khloe does not look normal. khloe's pale white skin is illuminating. it glows..like the beaming rays of the sun. Her little crossed eyes are the color blue most would kill for...like a bluish steel color--that you find in a midwinter sky. her straight dark blonde hair is almost always out of place, but always accenting her face perfectly. her flawless smile can make even the most miserable days brighter. her tiny little figure allows us to baby her just a little longer. Khloe doesnt look normal. Khloe is the look of perfection. Looking at my little girl is like staring at the most beautiful piece of art. like catching a glimpse of heaven. her simple elegance and abundant beauty reminds this family how magnificent it is to be different. her daily accomplishments teach us how to find the beauty in the smallest of things. her smile shows us how to have faith in times when faith seems impossible. her giggles light a fire in our hearts that remind us of all this family stands for. We are completely happy with having an 'ab-normal' looking child...
i wish each person in this world would see the beauty in differences. each persons differences tell a story. i ask that you all pray for those ignorant people..and lift up all the beautiful people that will hear ignorant words throughout their lives, because this world sees them as 'ab-normal' or 'different'....
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Thursday, April 28, 2011
Saturday, April 16, 2011
Friday, April 15, 2011
alone...
its funny how we can be surrounded by so many people, yet feel so alone. this week has been so crazy in the woods house. chris has been home all week with fevers that at times reached over 105. finally after a trip to the hospital we find out he has strep throat. he starts his antibiotics only to get thrush. Khloe's gums have blessed us with 2 little pearly whites. Lexi got the kitten she has been asking for, for about 2 years now. Moose has been clinging on to me for dear life. never separating from me, which i LOVE, however...as you can see its been crazy and with a clinging child i cannot get anything done. i have not had a solid moment to just sit down and think. im losing my mind.
late at night, when i choose to think instead of sleep, the one thing that has plagued my mind is Khloe's report from her physical therapist. Early Intervention, the program that coordinates all of Khloe's therapy requires a quarterly report from her therapists, which we then receive a copy of. again, it is like the other reports that are meant not to comfort a parent, but to inform the people helping khloe of her progress and what she still needs to work on. although i did find this report to be a bit more understandable, as i didnt need to google a million medical terms (or maybe i just understand more medical terms now), i still found that had that same brokenhearted feeling, maybe just a little worse this time, after reading it.
remember when you were little and you fell off your bike, or while playing tag, and you skinned your knee real bad? the kind that would leave a scab that would cover almost your whole knee cap. the kind that left you with a real nice scar. i think every kid has had a million of those. if you were anything like i was, prone to injury, or just a typical kid, just as your knee got a solid scab on it, you fell again and ripped the scab back off. each time it healed, something else got in your way, tripped you, and you skinned that knee over again. thats how i feel tonight. like that banged up knee...who wants more than anything to just heal and move forward.
reading this report was at first encouraging. it reminded me of all of the things khloe could NOT do 4 months ago. she couldnt roll over, hold her head up, sit up, receive weight through her legs, she was physically a newborn-though she was 8mo old. the report then boasted of how far she came, pointing out all that she can do now, and finally the dagger to the heart, the summery, where the therapist now feels that the chances of khloe walking on her own are slim. though she can walk assisted, she is still unable to balance, coordinate, or maneuver herself properly to walk unassisted. she is recommending that khloe be fitted for a posture walker or crutches if she isnt walking in the next couple of months.
fine. ok. i should have been ready for this. i should have mentally been ready. but honestly, are you ever ready to hear something like that? ever? i worry so much about how the world will see my little girl. i worry about those jerks on the school bus, or the mean girls on the playground, or the ignorant person in a supermarket. i worry. it scares the crap out of me. i know how i was raised. i knew early on that everyone was different. i was taught that everyone was equal, no matter what. end of story. its something i have never thought twice about. but sadly not everyone is raised that way. not everyone realizes the beauty in being different. i fear for my baby. i dont want to ever have to beat up a kid for picking on her...*laughs*
i feel so alone this week. i mean outside of chris and my family. i have distanced myself from everyone. i just feel like people dont get it. not too many people my age understand what its like being a mom of 3 kids under 5..let alone being a mother to 2 special needs children. not too many people my age understand what its like having your house taken over by early intervention, or basing your schedule around 2 hour trips to see specialists. not too many people my age have husbands, or houses of their own, or even stay at home all day with their kids. my life is not my own. it is run by my children. people dont get that. i love every minute of this crazy life...but sometimes just i wish there was someone else...outside of chris...that understood. sometimes i need a break.
i remember when all of this stuff with Khloe first came up...a lot of mothers who had been in my shoes before told me to invest in wine...i should have listened. i love my family so much that become consumed with them, and forget how to be me. i need a hobby. quickly.
ok. im done whining. thanks for listening =)
late at night, when i choose to think instead of sleep, the one thing that has plagued my mind is Khloe's report from her physical therapist. Early Intervention, the program that coordinates all of Khloe's therapy requires a quarterly report from her therapists, which we then receive a copy of. again, it is like the other reports that are meant not to comfort a parent, but to inform the people helping khloe of her progress and what she still needs to work on. although i did find this report to be a bit more understandable, as i didnt need to google a million medical terms (or maybe i just understand more medical terms now), i still found that had that same brokenhearted feeling, maybe just a little worse this time, after reading it.
remember when you were little and you fell off your bike, or while playing tag, and you skinned your knee real bad? the kind that would leave a scab that would cover almost your whole knee cap. the kind that left you with a real nice scar. i think every kid has had a million of those. if you were anything like i was, prone to injury, or just a typical kid, just as your knee got a solid scab on it, you fell again and ripped the scab back off. each time it healed, something else got in your way, tripped you, and you skinned that knee over again. thats how i feel tonight. like that banged up knee...who wants more than anything to just heal and move forward.
reading this report was at first encouraging. it reminded me of all of the things khloe could NOT do 4 months ago. she couldnt roll over, hold her head up, sit up, receive weight through her legs, she was physically a newborn-though she was 8mo old. the report then boasted of how far she came, pointing out all that she can do now, and finally the dagger to the heart, the summery, where the therapist now feels that the chances of khloe walking on her own are slim. though she can walk assisted, she is still unable to balance, coordinate, or maneuver herself properly to walk unassisted. she is recommending that khloe be fitted for a posture walker or crutches if she isnt walking in the next couple of months.
fine. ok. i should have been ready for this. i should have mentally been ready. but honestly, are you ever ready to hear something like that? ever? i worry so much about how the world will see my little girl. i worry about those jerks on the school bus, or the mean girls on the playground, or the ignorant person in a supermarket. i worry. it scares the crap out of me. i know how i was raised. i knew early on that everyone was different. i was taught that everyone was equal, no matter what. end of story. its something i have never thought twice about. but sadly not everyone is raised that way. not everyone realizes the beauty in being different. i fear for my baby. i dont want to ever have to beat up a kid for picking on her...*laughs*
i feel so alone this week. i mean outside of chris and my family. i have distanced myself from everyone. i just feel like people dont get it. not too many people my age understand what its like being a mom of 3 kids under 5..let alone being a mother to 2 special needs children. not too many people my age understand what its like having your house taken over by early intervention, or basing your schedule around 2 hour trips to see specialists. not too many people my age have husbands, or houses of their own, or even stay at home all day with their kids. my life is not my own. it is run by my children. people dont get that. i love every minute of this crazy life...but sometimes just i wish there was someone else...outside of chris...that understood. sometimes i need a break.
i remember when all of this stuff with Khloe first came up...a lot of mothers who had been in my shoes before told me to invest in wine...i should have listened. i love my family so much that become consumed with them, and forget how to be me. i need a hobby. quickly.
ok. im done whining. thanks for listening =)
Saturday, April 2, 2011
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