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Thankful

  Give thanks in all circumstances; for this is the will of God in Christ Jesus for you

1 Thessalonians 5:18

So i totally missed my cue to do the november blog challenge and each day list something that i am thankful for =( however it doesnt make me any less thankful for the millions of blessings i have in my life.

lexi had a homework assignment the other day where she had to illistrate a picture of what she was most thankful for this year. each year we always talk about things we are thankful for, but this is the very first year she understands fully what being thankful is. her homework assignment got me thinking..what am i MOST thankful for this year? i am thankful everyday for millions of little things..the air in my lungs, another day with my crazy kids, a husband who loves me, friends that stick by me, family that loves me, extended family that loves myself and my kids (and chris too), reconnecting with friends...but what is it that i am most MOST thankful for this year? so many choices...

this year was very trying for us-Khloe was diagnosed with Cerebral Palsy, Chris got very sick and then had a terrible reaction to the medicine he was on, we lost Hank who was a very amazing part of chris' life and who has done phenomenal things for our family, i was diagnosed with hypothyroidism & Crohn's Disease which has been an uphill battle, my mom was having health issues which landed her taking chemo drugs (she is no longer taking them THANK GOD) --then learned she had some slipped discs in her back which will ultimatly result in surgery, a person in my extended family was diagnosed with cancer ontop of the parkinsons disease he already had. a special little girl in my extended family at 3 years old had to undergo surgery for a tumor found on her leg (thankfully she is ok)...plus countless battles with school germs that lexi has now blessed us with =)and  a million other things that i am sure i forgot to mention.

its so easy to get caught up in all the things that have gone sour... but there was one thing that happened this year..that showed us that sometimes the blessing in a situation may not be so obvious-- you may need to search a little..it may take some time..but the blessing is always there.

January 11th was a day that we will never forget. 11 years ago on Jaunuary 11,2000 my mom, dad, myself and younger brother johnny welcomed a new addition to our family..my youngest brother Thomas Jay. my parents both being 38 at the time..me being 16 and johnny being 8 were quite surprised that our family was getting ready to grow again. though TJ was a huge surprise..he proves to be one of the biggest blessings this family has had. Each day i grow prouder of him. this year TJ was set to turn 11 years old on 1/11/11 we all thought that this was pretty neat..how many times do you get a birthday and your age with all the same digits? I remember this day so clearly..the lotto drawing was set to be during the 11pm hour.. chris and i were taking this as a sign that we were MEANT to play...so we got a lotto ticket..

on that same day..at 11am Khloe had an evaluation. she was 8 months old, unable to roll, hold her head up, sit up, she was basically still like a newborn baby. chris and i knew this was not typical so we decided to take the doctors advice and have a team of therapists and a nuero therapist come to evaluate her.  i can remember the clock striking 11..we were already about 10 minutes into our evaluation since they showed up early. i remember thinking to myself that i looked at the clock at 11:11 am on 1/11/11 on my brothers 11th birthday...there was no need to be scared of these results because clearly im lucky today. i watched a team of professionals play with khloe..take notes but there was one lady that my eyes kept wandering back to. she was a heavy set lady. with the sweetest voice. khloe for some reason focused on her as well. she had a necklace on that had an ichthus on it ( ichthus is a christian symbol-it is an empty fish which signifies Christianity). i had spoke with my mom prior to this and i was very nervous. i knew, in my heart, that something was different about khloe. she told the story of when i was little- her and my father had taken me for a cardiac catheter ( i think i was a year or 2 old). i had a hole in my heart that had not closed, a heart murmur and an enlarged heart. she told me that she was so terrified waiting for me in the waiting room. it was one of the hardest things my parents had ever had to do. she said suddenly she had this feeling..like a whisper from GOD, and she knew i was ok. she was calmed by the feeling. shortly after- they received the news that i was not going to need open heart surgery! she told me that morning to listen for GODs whisper. he would tell me everything was going to be ok. i never heard his whisper that day.

shortly after the evaluation was finished the therapists and neurologist was ready to give their results.  the speech therepist went first.. khloe was cooing and babbling as she should. her speech was fine. she said some other things..i dont remember much-just feeling relieved. next came the heavy set lady... she stood up off of the living room floor and sat on the couch across from me. i knew it wasnt good. she looked at me and started telling me that khloe was showing atypical movements, that she was fluctuating her muscle tone from high to low, she displayed frog legs, she had limited amount of muscle throughout her body, i mean the list just went on and on and on. she then looked over at the nuerologist who said she was confident that khloe had cerebral palsy-----------the room faded---------the sound disappeared as if someone hit a mute button-----

i remember the heavy set lady having tears in her eyes. she wouldnt look me in the face. im not sure what else was said...i just remember a numb feeling. somehow they left. i stood in my living room, looking at my husband, and i was numb. completely numb. we both cried uncontrollably. it was a cry that i will never forget. it sounded like our souls were being torn out of us. it was a pain that came from the pit of our stomachs. still, to this day, as i write this, i feel that pain. i still need to take breaks while trying to write this because the feelings are so real. imagine being punched so hard in the stomach...the kind of punch that completely knocks the wind out of you..a completely unexpected punch. it felt nothing like that...it was a million times worse. for everytime in my life i thought i had a broken heart--clearly i was wrong. this was a broken heart. i remember hearing them say she may never walk. the words were deafening. painful. scary. mind blowing. like nothing we had ever heard before....

the next couple of weeks were a blur...funny thing is we still only remember bits and pieces of the weeks that followed. but in those weeks we found something we may never have found had we not had heard those words 'cerebral palsy' we found strength. we re-found our love, this time stronger. we found god. we found our family values. we found out who was there for us when we needed them. we made new friends. we learned. it was like our eyes had been opened for the first time ever. THEN i heard the whisper. i felt it. i knew Khloe was going to be fine. even if she didnt walk..she would be fine.

as the months passed khloe began hitting her milestones. she began to walk. jump. run. climb. sing. screem. talk. roll. flip. feed herself...i can go on and on... while she still has great difficulty with some things she has overcome the unthinkable. she has such determination and will that i know this little girl is going to be someone BIG! khloe was made to do great things.  khloe was made to move mountains.

so this year...i am thankful for January 11th. i am thankful for the surprises that day has brought to my family. i am here to tell you that 1/11/11 at 11 am on my brothers 11th birthday was the luckiest day of my life...because on that day we learned HOW to live. we were no longer just existing...but living. counting the blessings that go overlooked everyday. seeing blessings in the worst situations.  we learned about our love...we werent just in love but now we understood our love and all of its capabilities. so we did hit the lotto that day...but our winnings will never run out. <3 I thank GOD for that day <3



*i should also say that on 1/11/2006 and 1/11/2008 i found out i was pregnant with alexis then chris jr =) *

oh and lexi was most thankful for her dad and her cat on her homework assignment!

Countdown to Breakdown...

Dear Alexis,

       There are so many things that we take for granted in life. i think time is the biggest. people are always wishing time away. hoping the day goes a little faster. rushing the week to get to pay day. rushing a month to get to vacation. rushing the season to get different weather. rushing years to be a certain age. i am guilty of all of those. the day you were born everyone told me to enjoy every moment with you, because time would fly. i do believe that was the greatest piece of advice i ever recived. but sadly i never followed it, or belived its truth. while i did enjoy (and still do) every second spent with you, there are times i rushed you. there are times i wish i could get back to relish in the moment. to just relax and know that these moments are going to be the ones i look back on the most. Kindergarten is fastly approaching. I want to admit something to you. I am terrified.


      there are so many things we go through as parents. many emotions. many trying times. thankless moments. but this is the biggest emotion i have felt so far. trust is a very hard thing for me. i have difficult time trusting anyone outside our family. i feel like i am trusting too many new people with you. a bus driver to get you to school. to make sure you are not being picked on. trusting them to drive safe. make sure you wear your seatbelt. make sure you get off at the correct stop. i am trusting a teacher. to make sure you are learning. to make sure you are not being bullied. to make sure that you are having a good day. to make sure you arent intimidated. a lunch lady to make sure you eat. recess monitors to make sure you dont get hurt. all of this is so hard for me. but the thing thats harder than that- is admitting that you are ready for this. admitting that 5 beautiful years have passed. that you have gone from that beautiful baby to this amazing, full of life, smart, confident, little girl. a girl who is anxiously waiting for her first day of school. a girl who tells her parents shes ready to make new friends and learn new things. my baby is no longer a baby. she is growing older each day.

      i would give the world to hold you for the first time again. to see your first smile. hear your first words with your tiny little voice. smell the formula on your breath... or even walk around with spit up stains on my shirt.  i cannot figure out where 5 years went. how did we get here? i never knew letting go even the slightest bit would be so hard. so heart breaking.

     i know i still have your brother and sister here. but i cannot help but think about the loneliness my heart is going to feel. i know i am being selfish...but the truth is you are my best friend. i rely on you more than you will ever know. but i know that this is going to be a great thing for you. for both of us. because i am learning through you!

    so though i am deeply deeply upset...i wear a smile for all that is ahead. i refuse to waste anymore time thinking about being upset..but instead i will enjoy the moments. because when you are graduating and heading to college..im sure i will look back and wish you were going to kindergarten..instead of a dorm. i will wish i took time to enjoy this moment. so i promise you i will enjoy it. then cry once you leave :)

   i want you to know that YOU are an amazing girl. you are capable of anything you dream. your father and I have always tried to show you how brilliant you are. we want you to know your worth. i want you to know that while you are without a doubt a leader..there will be times where you must follow. make sure you follow the correct path. if you stray away from the right path... refocus... look to god..and get back to the path your heart leads you to. its always wise to use your head, but sometimes you must listen to your heart. your heart is where your soul lies. where YOUR truth lies.  make goals. when you reach them its super exciting. even if you think they are stupid goals..they arent. have faith.. god carries us through everything. he will never leave you.  remember dad and i are NOT behind you...we are 10 steps in front of you. we will fight the world off for you if need be. trust that you can tell us anything. while you may think you will get in trouble or hurt us... dad & i are on YOUR side. you can tell us anything, without reserve. dont ever forget who your best friend is. dont look to us for guidance...look above...look to us to hold your hand.

more than anything. please remember i love you. no matter what i am always proud of you. you are my hero.

my last and final list of things to do/remember is to ROCK KINDERGARTEN!!! go show 'em what your made of baby! let that glittery personality shine baby!!! let the world know: ALEXIS NICOLE WOODS IS HERE TO TAKE ON THE WORLD!!!!!!!!!!!!!!! AND YOU ARE GOING TO BE SOMEONE BIG!!!!!!

i love you forever sheepy!

Birthdays & Confessions

wow! its been a long while since i have been able to blog! but i am back...and have so much to share. hopefully i remember everything in this post =)

Happy 1st Birthday Khloe' Madison Woods

since i last posted so many great things have happened. first being Khloe blew out 1 candle on her birthday cake! she hit a year old!!! it was such a bittersweet day. as i am sure i have previously shared chris and i will not be having any more children. we do hope that we will be able to adopt a child in a few years-god willing. so watching khloe move through the crowed of people who were so nice enough to come celebrate this special day with us was very emotional. watching her smash her cake and knowing that this is the last time i will put a single candle on a cake was very overwhelming for me. i kept giving myself continuous reminders to breathe deep and every time i wanted to cry i reminded myself to look away and relax. this is my 3rd baby...a first birthday never gets easier. i cry at every one. im such a mush. we had an AMAZING turn out...55 people showed up at the park to celebrate with Khloe & enjoyed her butterfly theme. i love themed parties. im corny like that. i love themes. i cannot get enough. i think somewhere i missed my calling as a party or wedding planner..i love planning. i love details. i love organizing. its just my thing. and i must say..im fantastic at it. i carefully picked each theme of each of my children's birthdays...and khloe's first birthday was no different. butterflies. not because they are pretty. or girly. or because i liked that pattern. but because to me khloe is like a butterfly. you see, when she was first diagnosed with cerebral palsy our minds went to the worst place. our hearts sank. we were filled with hurt/frustration/pain/guilt/sorrow... i mean so many emotions that no one will ever understand until you hear that something is 'wrong' with your child. in our darkest hour...in a time where no one could help us feel better...khloe spread her wings. she showed us how to fly. how to rise above and soar. i am proud to say since 1/11/11 when khloe was diagnosed this family has overcome so much. we dont back down from a challenge anymore..we rise to the occasion. we thrive off challenges.  khloe has given this family wings. she has shown us what family is about. how strong we are. and that is why butterfly was so suiting for khloe.  her big sister lexi picked out her cake...which was of course not with the butterfly theme...but tinkerbell...which works for me because tink has wings too! the weather was perfect, food was fabulous, and the day went smooth. seriously, we are blessed to have such great friends and family.  i dont think they will ever know how much they mean to us.

Khloe', her daddy & big sister Lexi blowing out her candles!

i happen to have some more amazing news....KHLOE IS WALKING!!!! well....khloe is actually walking, hopping, running, tumbling, and chasing anything she can! she is on the move...so watch out world!! i cannot explain how amazing a feeling this was. it came at such an amazing time in our lives....you know i have to admit something to you. its horrible to have to say this...but the truth is, part of me feels like i somewhat failed as a parent. when you have a child with a diagnosis like khloe's (or any medical diagnosis) i think it becomes so easy to get caught up in that diagnosis. in therapy. in medical terms. in appointments. in the whole process...and sometimes you forget that this child is just a child. i am guilty of that. i became obsessed with CP. with treatments. doctors. therapy. with the what-if's and the maybe's. some times i would lose focus and forget that this is my baby...and i have to still allow her to be a baby. shes not going to want to do PT every time. shes not going to want to sit and focus on pincer grasp for an hour, or practice her gait, or weight balance all the time. there are times (more times than less) that she just wants to play, and have fun, or nap longer, or be silly. its so easy to forget to allow those things and become so obsessed with getting your child to where the world or doctors feel they should be. you forget to just let your child be. i realized this about a month and a half ago. after my laptop kicked the bucket and i could no longer google every little thing. i couldnt google her gait. or why her feet were doing these weird turning things, or why she isnt able to use a spoon or fork. simple things. weight gain, milestones...different PT methods...i couldnt google. i was a mess. what would i do without google? because after all in my head the world CANNOT survive without google. let me just say...google was the worst addiction i have ever had. once it was taken away and i couldnt over analize everything...or listen to horror stories...i began to let MY instints take over. not the advice of a doctor. or google. I let my mommy instincts run wild. you know what they told me? to sit on the floor and play. just like i had (and still do) done with Lexi and Chris. just play. i allowed her to go in her favorite johnny jumper which the PT forbid. she loved it. after 20 minutes she was ready for a nap. i forgot all the therapy methods, i threw out google advice and most of all i put anything negative so far out of my mind. you know what happened soon after? khloe took steps. 2 became 4 then became 20 and now i cannot keep up! this whole time i was worried about the world treating khloe different...i didnt realize that i was treating her different. i wasnt allowing things to just 'be'.  khloe i am happy to report that khloe is perfectly on time with every single milestone. ahead still in her speaking. and is driving her older siblings CRAZY!!! face it--they are just way too cool for her. *laughs*

we are getting ready for vacation at the end of august! i am so excited. this has been a crazy year..and i think time away will do us justice.  i promise to post more..my computer still isnt working but soon should be. i wish i had photos to share however they are on my computer...and im using chris' computer :( but i promise a video and photos soon!!!

just a vent....

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'....

Khloe going nuts!

Khloe was having a blast after her bath!

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 =)

 

Challenges and WINNING!

“Life's challenges are not supposed to paralyze you, they're supposed to help you discover who you are.”

- Bernice Johnson Reagon (American Historian & Musician)

“People are like stained-glass windows. They sparkle and shine when the sun is out, but when the darkness sets in, their true beauty is revealed only if there is a light from within.”

I was never one to be fond of challenges. I like simplicity.I like knowing the outcome. i like predictable things. i like being in control. I have learned so much in these past few months, it has changed me. i now rise up to a challenge. i beg for the opportunity to be challenged. its great exercise for the mind. it leaves your soul feeling refreshed once you have hopped over hurdles, danced in the rain, and proved people wrong. its reviving. i now like surprise. i like not knowing. because it causes you to work harder to get the ending that YOU want. if you already know the outcome wont be to your liking-you are less likely to accept a challenge. Thank you Lord for all of the challenges, obstacles, rain storms, and all out wars you have blessed this  family with. They have simply changed us. strengthened us. We have learned to dance in the rain! We are ever so grateful for the challenges the Lord has given us. 

The saying goes "what doesnt kill you , makes you stronger"...and i do believe that. whole heartedly.  

“A desire can overcome all objections and obstacles.”

Yesterday we had a doctor appointment in westchester with the neurologist.  something about the ride is always relaxing. maybe its just the quiet time  (Lexi and Moose hang with grandpa when we go). The fresh air always smells better, the sun beaming through the windows is always brighter. Maybe its just the Lord carrying us. Letting us know that he is there, holding our hand. whatever it is, the ride is enjoyable. 

Yesterday during the ride, i thought about the past couple of months. I thought about when we first heard the words 'Cerebral Palsy' and how earth shattering that was for us. how our world completely stopped for the next few days.  i can so vividly remember each emotion felt. I can still feel the ache in my heart. I can picture the tears that rolled so slowly down my husbands face, i can hear the cry of a heartbroken father, feel the fear of a scared mother, the pain of not knowing, and i can-more than anything- remember the glow that never left Khloe's face. I am sure this is a time i will never forget. Still writing about it makes me cry. I sit here reminiscing to that time and the tears stream down my face. But its a different kind of tears now. My tears are not tears of fear, hurt, anger or confusion...these are tears of pure joy. tears of acceptance. tears of bliss, of bravery, of accomplishment. tears of pure satisfaction. Today i cry because i am happy. I know there is no cure for CP. I know Khloe will have this for life. Often times chris & i find it funny when we come back from doctor visits, people will always ask how she is, and how we made out, and if she still has CP! of course she still has it silly! its not a misdiagnoses. i know many are hoping for that, but its not. Chris and i have learned to accept this, and we just more than anything want everyone else to understand, this is just a part of who Khloe is.  we dont want the Lord to change her, we dont pray that he changes her, we just pray for wisdom, knowledge and strength when things become overwhelming. We pray for Khloe to have the ability to overcome obstacles. We hope that one day the world will view special needs people differently than they do now. Because although WE accept Khloe and embrace her differences, not everyone is like us. Often times i think about Khloe going to school, or just growing up in general, and one of my biggest fears is that other children will pick on her, make fun of her for being different, or call her names. it scares me to death. shakes me to my core. i become so enraged when i think about it.  I know i cannot change the way the world views things, but i hope one day, everyone will understand its ok to be different. 

Khloe LOVES to climb on the furniture like her Big sister & Big brother!

Our doctor visit went well. Khloe showed Dr. Roseman her skillz (hahaha)! she crawled, sat, and pulled herself up, clapped her hands, copied words we were saying (momma, dada, baba, no, wow, hi) and impressed him so greatly that he saw no need to do an MRI with sedation. He feels that Khloe is doing a fine job of progressing and will not do invasive testing unless her progress slows down or comes to a stop, or unless there is another medical reason to do so. He also explained that he is almost 100% confident that a stroke in her first few days of life caused her to have brain damage resulting in cerebral palsy. So far she has only been limited physically, and seems to even be moving past that. I again asked if she would walk. i know there is no answer to that question, but i am compelled to ask every time. again he told me he cannot and will not attempt to answer that. We are holding onto hope that she will. She puts weight on her legs, pulls herself to stand, and is starting to side step along furniture. with all that said, even if she cant walk on her own..she will be able to walk with a walker! so no matter what... we are hopeful. Khloe made out so well that we dont need to go back to the neurologist for 6 months!! yay!! bi-weekly visits with gas prices as high as they are were proving to be a killer on our bank account!

other great news--Khloe's glasses have arrived! we got the phone call a little while ago. sadly--the snow is keeping us from picking them up...but they are here...and surprisingly FULLY COVERED by the insurgence!

“The greater the obstacle, the more glory in overcoming it.”

i feel like this family has overcome so many different obstacles in the past couple of months. not that khloe's diagnosis was an obstacle..but our feelings were. our feelings at times got the better of us. fear, anxiety, anger, sadness...they at times overwhelmed us. it seems when we chose not just to rise to the occasion, but rise ABOVE it, the lord really blessed us. We put all of our trust in God, which is a hard thing to do. ill be the first to admit it. its hard to trust so deeply and so fully in someone you have never met face to face...its hard to go on blind faith. but we did. and we still do. and that is why this family is capable of doing such great things. i truly, each and every night, see how many blessings i can count from the day. i do mean that. every night.  some days i can count more than others, and oddly its the days that are the hardest that i find the most blessings. 

the one thing i want to say, that maybe i dont express enough is that i could not have done this without my husband. he is my best accessory. he is my better half. i love each moment i spend with him. he understands, no matter what. all i have to do is look at him, and he knows what is deep in my heart. he has dried so many of my tears, carried me through the hardest days, and stayed up countless nights crying with me. i could not have asked God for a better soul mate. I am blessed.  

We Teach our kids to do their best at everything...and to be the best at ANYTHING...you MUST be a Yankee fan!

In the now famous words of Charlie Sheen....This family is WINNING!

its been a while..

wow! its been a little while since i have written! trust me, its not because of a lack of events on our end...we have actually been so incredibly busy that i havent even had time to sit and organize my own thoughts! this past week has been very stressful, not because of anything out of the ordinary, but just everyday life was overwhelming for some reason this week.

Wedneday we made another trip to westchester...this time for the pediatric ophthalmologist, Dr.Katz. im not sure im crazy about him. he is good, but he doesnt have a very warming personality, something i feel you NEED when dealing with children. but he was a good doctor. he knew his stuff...and how to help us understand whats going on with Khloe and her little baby blues! Khloe has something called accommodative esotropia. I know what your thinking...ok in engish! basically khloe is farsighted. when she tries to focus on objects her eyes cross inward.  which is why her eyes are not always crossed.  this condition is common in children with muscle tone issues--which seems crazy to me, because if 10,000 kids are diagnosed with CP each year...and most children with CP have tone issues...one would THINK it would be easy to find a pair of glasses for a child Khloe's age! wrong! thankfully a friend told me about these miraflex glasses and sent me all the local places that sell them in our area. i was able to make an appointment for her to get fitted tomorrow.  her lenses had to be specially ordered because they are a high RX and have to be polycarbonate (its a thinner lens so it wont weigh her face down..since her lenses are very thick)! so we got that all squared away. we were unsure if our insurance would cover them, but thankfully they will!! We wont know if Khloe is actually seeing out of her left eye until she is older...and can read a chart..but for now we are treating her left eye as if she were seeing.

i forgot to mention, the doctor dilated her eyes...and she was allergic to the drops! true khloe form, keeping us on our toes! we had to find a place that had benedryl, because the dr didnt have anything in his office, and seemed he could care less that khloe was swelling before our very eyes. he hurried us out and told us to give her allergy meds! thankfully my pediatrician returned our call very quickly ( i love Dr. Tashman..he is the greatest) and instructed us on what to do. Khloe is now fine. but we want to know what was in those drops! especially if its a dye or something--she may need other tests in the future and i dont want to risk that reaction again.

The rest of the week has been spent painting..eh. the whole house. yuck. i am so tired and sore. and lexi has convinced me to paint her room today. its this really light shade of pink, which i would think goes on quite easily, but for some reason, i cant get it to go on even and her dang walls are soaking up the paint...its gonna need a million coats..i can see it now!

other than that...things have been quiet. Khloe tried table food for the first time on saturday. Parmesan crusted chicken and smashed taders... she did ok. she cant figure out how to keep the pieces in her mouth. as soon as she chews they shoot out!!! shes been pulling herself up to stand on everything. she also started to take steps while we hold her hands. this is a big event because it takes a lot of focus and brain power!! go Khloe!! shes been crawling (still not very strong- but she gets everywhere she wants)!!

we go back to see Dr. Roseman (the nuero) on 3/22--im actually looking forward to what he has to say! i love visits with him. hes such a great doctor.

well i suppose i should get back to painting...my boss lexi is breathing down my neck. sheesh..i cant get a break around here!

What a Week!!

this past week has been filled with so many milestones, events, and sicknesses in our house its unreal! i am so exhausted! the start of last week i was terribly sick with a head cold. not just any head cold...but the worst! i was in bed as much as i could be with 3 kids and a hardworking hubby! thankfully (so far) chris is the only one who managed to be contaminated by my gross germs. and he is still battling it!

but that didnt stop our week from progressing into a better light! tuesday my little Khloe had her 9 month well visit. i always dread them. i hate hearing how behind she is. what milestones she should be reaching and what she  should weigh...but this time went surprisingly well. maybe because i had already prepared myself for the worst going. i know khloe is tiny. i know she is 'delayed' physically. i know NOT to read the milestone sheets...so going in with no expectations makes things SO much better when things go differently. I always hate going into the exam room and hearing "ok can you please undress khloe and put her on the scale" i cringe. I know Khloe eats...actually probably more than most kids her age. shes nothing short of a savage when she devours her food. especially when its carrots...those poor carrots never stand a chance. but for some reason khloe just doesnt get bigger. she had dropped down to the 10% for weight at her 6 month visit...which really upset me. the doctor assured me it was because there was simply limited muscle in her body and muscle weighs more...but still..i felt horrible. soo when the nurse asked me to put her on the scale..i felt the tears welling up in my eyes..i gave her a big old raspberry on her belly and placed my tiny little girl on the scale...and the numbers came up-- 15.8 pounds!!!! yay!! Khloe has finally packed on some pounds! she moved up to the 25% for weight..i was smiling from ear to ear!! while waiting for the doctor to come in--we played a couple rounds of patty-cake and this little piggy and laughed and smiled..and i loved all over my little love bug. i know shes doing well...but i sometimes feel like i need to convince the doctors and therapists that she is too. i know they see her progress...but i feel the need to make it extra known. i think thats just the mother in me. so when her pediatrician came in he had this shocked look on his face..and he just looked at me and smiled and said...Holy cow look at those legs!!! he knew they had gotten bigger, and stronger, and FINALLY some muscle! i didnt have to point it out, or try to prove it to him...he knew! after her exam and talking about what the specialists were saying and all that jazz-he said to me the difference in khloe from six months to now was like night and day...she has come so far! what an amazing feeling. i cant put into words how that felt. reassuring doesnt quite cover it.

later that night we had a PT session...khloe was in a rotten mood...and threw a full on temper tantrum the whole time. so we did as much as we could with her....but she didnt want to have to do any work..she just wanted her toys and to be left alone..she got up on all fours to crawl but to no avail. she did this a couple of times before i asked the PT how much longer she thought before khloe got her confidence up and what we could do to help her feel secure enough to make that first move...as i was saying that..she took 2 little crawls and fell over! we were both shocked. i think khloe was too. the next couple of days were much like that...2 crawls and a fall..but she kept plugging away. and we all cheered her on..every single time. i know people get tired of hearing me brag about little things that khloe does..or when we are out we clap over the smallest of things...i mean all 5 of us cheer (she cheers for herself) but i feel like when she hears us cheering, or knows we are proud, she feels it in her soul. she knows we love her and are proud of even the smallest of things. i feel like that keeps her going. maybe its all in my head..but its what i chose to believe. i mean seriously- this family could put a cheerleading squad to shame! a few days later....Khloe crawled completely across the living room! she hasnt stopped since. her left leg turns in a lot. but she is VERY conscious of it. and will completely put her right leg over top of her left (hard to explain without seeing it for yourself) so that she doesnt get caught up. and let me tell you...that little stinker is QUICK! she moves!

there was still one more thing we waited for. i am sure most of you have no idea what its like waiting to see if your child will ever walk.  all parents wait for that milestone. its a big one. one of the biggest. ok...maybe the biggest. so when you are told your child may never walk its life changing. my son (better known as moose) is borderline autistic. he has a high functioning version of autism. he has his quirks. he has his routines. and he is delayed without a doubt speech wise. but he is one of the smartest kids i know. he is also clumsy and lazy..and a typical boy who jumps off of things...falls..all of you with a boy know what i mean. i remember the day after hearing khloe may never walk--we were on our way out, and moose takes his sweet old time walking down the stairs. each time he gets down a step its 5 minutes before he makes it down to another..it was snowing that day..and he is also afraid of snow. so he was extra paranoid about it getting on his shoes..i was rushing (as usual) to get everyone in the car before we froze..and there he was taking his time. thinking about each step..and each snow flake. normally i would get annoyed and pick him up and carry him, but that day..i saw the beauty in what he was doing. simply going down the steps. i thought to myself--this may be the last child i teach how to walk down the stairs. since that day...i have seen the beauty in the smallest of things. i cherished the small moments. i realized that no one could give me a definite answer when i asked if khloe would walk. but i wanted to know. i needed to know. i spent weeks praying for a sign. and finally i got tired of wondering. of worrying. of crying. i embraced the fact that this may never happen and thats fine.  shes still ok. there are so many other people with much harder things to conquer than this. i accepted it. i accepted that though khloe may never walk, its not the end of the world. shes still capable of anything anyone else is. so we continued to focus on her sitting, and her crawling...and her smile and just being with her. we shared the news with lexi..and showed moose and lexi how to help her 'work out'-- we found joy in PT and just learning different things about how our bodies work, and how to do things differently to help khloe. we learned how strong of a family we are. how much love we have to offer. and just when things were going great, and khloe started crawling, we were busy cheering for that MAJOR milestone...khloe stood herself up. thats the answer we were waiting for. khloe will walk. we were assured that if she can stand herself up and bare her own weight, she will walk.

i am so thankful for my faith. for a restored faith. i count my blessings all the time. i have learned to count the smallest of things as blessings. my children have helped me see the world differently. i see the world through the eyes of a pure diva (lexi...if you know her you will understand that she is all things that i am not...girly, pink, poofy,frilly,sparkley..and so on) i see the world through an autistic child's eyes ( i see the beauty in routine, taking my time, patience, and every little quirk that moose has) and i see the world through the eyes of   a child with CP ( i see the beauty in determination, again patience, and the smallest of small things) i could not have asked for better children. i know i am suppose to teach them, but right now i am having the best time learning from them.

 thank you god for this family. for my kids, and my husband. thank you for a mother that picks me up and dries my tears, who helps me carry on when i feel i cant. for sending me a man who can finally deal with me (*laughs*) and children who have shown me your face when i lost sight of it. i am a blessed woman.  what more can i ask for? simply nothing.


2 Samuel 7:29 (NIV)
Now be pleased to bless the house of your servant, that it may continue forever in your sight; for you, O Sovereign LORD, have spoken, and with your blessing the house of your servant will be blessed forever."

Khloe's Krew

We have picked a name for the march for babies... Khloe's Krew...PLEASE make sure you join us or donate to our team!!! every little bit counts..and every walker means the world to us!! our walk is Sunday May 1, 2011 at 10am!! we are walking at woodburry commons & i will be contacting each walker when it gets closer to our walk date for shirt sizes so i can place an order for team shirts!!!

make sure you click the link to donate or come walk!!!

Thanks everyone!

http://www.marchforbabies.org/team/t1524322

March of Dimes-- March for babies...

So Chris and I have been trying our hardest to find some fundraising events for cerebral palsy. sadly our local UCP chapters are very inactive and dont do a lot of events..so we decided to join forces with the march of dimes--and do the march for babies. March of Dimes is an organization  whose mission is to improve the health of babies by preventing birth defects, premature birth, and infant mortality. Though M.O.D supports a number of different things,  i wanted to point out how they directly support CP-so i took the following from the March Of Dimes site:


The March of Dimes supports a number of grants on prenatal brain development and factors that may disrupt it.

One grantee is studying how developing nerve cells in the fetal brain respond to prolonged oxygen deprivation. This can improve understanding of how lack of oxygen before or around the time of birth can injure the developing brain and how such brain injuries can be prevented or treated.

Another grantee is investigating how intrauterine infections may contribute to brain injuries that result in cerebral palsy, with the goal of developing drug treatments to help prevent these injuries.

A grantee also is studying specific learning disabilities in young children with cerebral palsy in order to develop improved interventions.

Many other March of Dimes grantees are seeking improved ways of preventing preterm delivery, an important risk factor for cerebral palsy. 


So we are searching for the perfect name for Khloe's team...and we are excited to walk for not just her...but every other child with a special journey! I will keep you all updated on what we are doing to raise money, how to donate to March of Dimes, and let you know all about our team (once we have a name!) 


Our walk date is 5/1
at 10am  in woodburry commons!

again...if you want to join Khloe's team i will have more info in the next few hours! also..if you have any fundraising ideas please let me know!!!

carry me....

Today is the day. today is khloe's ultrasound of her brain. i knew all week it was coming...but today i feel unprepared. i slept terribly, i feel terrible. i have such an uneasy feeling in the pit of my stomach. i know things could be much worse...i am fully aware of that. i know God is guiding me. but i feel so alone. and scared. what if they give me her results right there? what if i look at the ultrasound and see something i know shouldnt be there. what if they find a blood clot, or a tumor, or that her brain isnt growing correctly? my mind keeps taking me to the worst place. i hate waiting. i hate not knowing. everyone that knows me knows i have to know each detail about everything. its like an OCD that i have.

Khloe is just laying here looking at me as i write this and i cannot even look at her. my heart aches for her. i hate that i have to put her through this. i know the test is painless...but seriously who ever wants to do this with their 9month old. today i just feel like this is too much. shes so innocent. so perfect. today i just dont understand. i have such an aching feeling in my chest..for every time i have thought i felt a broken heart, i clearly have never. god my chest just aches. a deep aching. its my soul. my soul hurts. i feel like i have been punched so hard in the stomach. have you ever been punched so hard you get the wind knocked out of you? you know that feeling when your muscles hurt in your belly and you just can help but hunch over to hold yourself up? thats how i feel...mixed with a feeling like i ran too much, and i cannot catch my breath. why am i back at square 1 again? i thought i was past this feeling? this hurts so bad. i have come to realize that the worst feeling in the world is not being able to help your kids when you feel they need you most.

i know im being selfish right now. im being a big baby. there are far more severe things khloe could have in this world. life could be so much worse. but im finding it so hard to keep focused on that today. i just cant do this today. but i have to. time to put my big girl panties on and deal with life. no one ever said this would be easy..

soooo here we go. praying. eating. getting everyone dressed...and its game time. god--please dont forget to carry me today. i need you. i need to feel you today. i need you to hold me and keep me strong so no one else can see me weak. i need to smile because i have 3 kids that base their day on my smile. i cannot let them know i am broken.

I will carry her....

its funny the things kids pick up on. amazing how much they listen when you think they arent. interesting the questions they come up with inside their minds...and incredible how they comfort you without even knowing they did.

today after going to visit my mom, we got home, and while getting everyone to bed lexi had a question to ask us. which is normal in her bed time routine of pure procrastination... "Mom--can you and dad come in here?" she asks...so i told her to hold on..until we got everyone else settled. a few minutes later chris and i go into her room and she asks us to sit down...so we do. she says " i have something serious to ask you.."  so chris and i kind of chuckled and figured it was about a new barbie, or some new toy she saw on her t.v...so she proceeds to ask us " will khloe be in a wheelchair?" immediately my eyes filled with tears. how do i answer this? how can i explain this to a 4 year old? my mind went through so many different answers...first being..."just say no...so she doesnt worry..its a simple answer" but the reality is Khloe may be in a wheelchair. i cannot just say no to something that is a very real possibility. i cannot and will not lie. i asked her to give me and chris a few minutes to talk...just so we both could be on the same page when it comes to explaining this. i didnt want to make khloe appear any different than Lexi or Moose. i didnt want lexi to worry. i didnt want leave anything out so she would wonder. chris and i knew one day we would have to explain this to each of our kids, but we didnt think it would be this soon.

after a few minutes of talking...we decided how we would explain this to her, so SHE would understand. obviously lexi does not know what CP is, nor does she understand all the medical terms...heck-chris and i still dont!  so tonight was my first try at answering questions that my children have about this.

we told lexi that khloe has something that makes her muscles a little weaker than other peoples. but it doesnt make her any different than her or moose or anyone else. we explained that "my friends" that have been coming over were actually coming to help khloe do some exercises to make her very strong, and that khloe will need to work extra hard all her life to stay strong..as strong as supergirl. I then explained to her that wheelchairs help people who have a hard time walking, just like grandma bella walks with a cane, or some people may use a walker, a wheelchair helps people whose legs may not be strong enough for them to walk on...so yes Khloe may not walk, and she may need a wheelchair. but i told her only God knows that right now. Only God knows what khloe will do in her life..and i assured her that whatever God wants khloe to do, will be done..and as long as we let him guide us...khloe will be ok. she asked us if khloe's legs hurt, and we told her no, and assured her khloe is in no pain. she also wanted to know if khloe would still like princess things if her legs couldnt walk...we told her she would LOVE them. she had some more questions, and we made sure we answered each one, as best as we knew how...and as hard as it was. after all was said and done, we tucked her in, shut out her light, and she says, "dad-- if khloe doesnt walk..i wont ever let anyone steal her toys--because she wont be able to run after them" *laughs* and then she says "and dad- who cares if khloe doesnt ever walk...im her big sister...ill carry her forever." with that said, chris shuts the door, and we both broke down in tears.

We will all carry you forever Khloe. forever.

I Am the Disabled Child...

I Am the Disabled ChildI am the child who cannot talk. You often pity me. I see it in your eyes. You wonder how much I am aware of...I see that as well. I am aware of much...whether you are happy or sad or fearful, patient or impatient, full of love and desire, or if you are just doing your duty by me. I marvel at your frustration, knowing mine to be far greater, for I cannot express myself nor my needs as you do. You cannot conceive my isolation, so complete it is at times. I do not gift you with clever conversation, cute remarks to be laughed over and repeated. I do not give you answers to your everyday questions, responses over my well-being, sharing my needs, or comments about the world around me. I do not give you rewards as defined by the world's stardards...great strides in development that you can credit yourself. I do not give you understanding as you know it. What I give you is so much more valuable...I give you instead opportunities. Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible. I drive you further than you ever go on your own, working harder, seeking answers to your many questions, creating questions with no answers. I am the child who cannot walk. The world sometimes seems to pass me by. You see the longing in my eyes to get out of this chair, to run and play like other children. There is much you take for granted. I want the toys on the top shelf. I need to go to the bathroom... oh...I've dropped my spoon again. I am dependent on you in these ways. My gift to you is to make you aware of your great fortune, your healthy back and legs, your ability to do for yourself. Sometimes people appear not to notice me; I always notice them. I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent. I give you awareness. I am the child who is mentally impaired. I don't learn easily, if you judge me by the world's measuring stick. What I do know is infinite joy in the simple things. I am not burdened as you are with the strifes and conflicts of a more complicated life. My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love. I give you the gift of simplicity. I am the disabled child. I am your teacher. If you allow me, I will teach you what is really important in life. I will give you and teach you unconditional love. I give to you my innocent trust, my dependency upon you. I teach you of respect for others and their uniqueness. I teach you about the sanctity of life. I teach you about how very precious this life is and about not taking things for granted. I teach you about forgetting your own needs and desires and dreams. I teach you giving. Most of all, I teach you hope and faith. I Am The Disabled Child. - Unknown

Khloe Update!!!

Yesterday was an all around beautiful day. It wasnt just valentines day, but also Khloe's first visit (of many to come) to the neurologist. I was so mixed with emotions yesterday morning, but the one emotion that i did not feel, for the first time in weeks, was scared. It could just be that this is all settling in, or maybe i am a little numb, but i truly think its because i have put so much faith in God. I know i cannot change whatever caused Khloe to have CP, and i do not want to. This is who my Lord intended her to be. He does not make mistakes. he created her perfectly for me. for this family. and even better, he created her in HIS OWN image. what could be more perfect? There were times yesterday where i felt God carrying me. The drive up was wonderful. long but wonderful. chris and i were alone (well...khloe is quiet so it feels like we are alone) and thats something that hasnt happened in probably over a year. we got to talk-and just enjoy each other. of course we love our 2 oldest children, but i cannot say how nice it was to have that mental break!! amazing!! i felt calm. for the first time in a couple of months, i didnt hurt, or cry like i normally would. i was ok. i felt sure of everything. i felt god. filling out the paperwork, chris looked over at me and said "I cant believe we are really here.." its very surreal sitting in a neurologists office with your 9month old. its not something you would ever expect to have to do. but again, i was at ease. when Dr. Roseman (who prefers to be called Bruce) came out to get us, i felt fine. i was ok.  chris was ok. we talked to the doctor, he talked to Khloe, he played with her, examined her, and there were a few things he was concerned about. but he didnt alarm us. he was the greatest doctor chris and i have ever met. so reassuring. he never pointed out anything bad, or that she wasnt doing, but focused on all she was able to do. he was beyond happy that she is progressing above average with her language (making vowel sounds, saying different letter sounds, and engaging with us) and also thrilled that when he pointed to something, she knew to look, which most children dont learn until well after a year!! these were great signs!! We learned that Khloe's CP is only affecting her physically. We still dont know, and wont until it happens, if she will walk. but we know, because he promised us, she will be fine.   This man was amazing. he went out of his way to call the evaluation team in front of us, to tell them that his findings didnt agree with theirs, and that she is not delayed emotionally or socially. he had a revised copy sent from them to us, her ped, and himself. he got her into the ophthalmologist faster. we could not have asked for a better doctor. we did tell him that...and his response was " you both are trusting me with Khloe, thats not something i take lightly, i will do all that i can to show you i am worthy of your trust"...i wish every doctor was like him.

He did reinstate that Khloe does have Cerebral Palsy. He is very concerned with her eyes...as she is going slightly blind in her left eye. well--more than slightly. shes not seeing out of her left eye. She has asymmetric development, meaning the left side of her is developing slower than her right side. this could be caused by a an issue in her brain...she needs to have an ultrasound of her brain. i called today because i wanted to know EXACTLY what they were looking for, which is something called  PVL (PARAVENTRICULAR LEUKAMALAYSIA) if you are unsure of what that is you can read about it here: http://www.childrenshospital.org/az/Site1434/mainpageS1434P0.html

i was and am at ease with this, a woman who i met, her daughter shares the same diagnosis as Khloe, and though she older than Khloe, their similarities are unreal! when speaking with her last night she told me her daughter had a PVL...and i know, without a doubt , her daughter has surpassed all of the doctors and therapists expectations, and that is an inspiration. so i know Khloe will be ok. this is not something we cannot handle. we also have to have her thyroid tested and she needs a CPK test. CPK test will show if she has brain damage due to a brain injury, and because this ISNT something that happened while i was pregnant, the neurologist feels its something that could have happened at the hospital. within a week of Khloe being home she showed early signs of CP.  it will hopefully help us learn what caused this, though we dont really need to know at this point. we just feel its not going to change anything, it cant make her better, or be undone. it is what it is. this is who Khloe was meant to be. we wouldnt have her any other way! We go back on March 22nd to follow up with the tests.. and hopefully we will learn more!

Thank you all for your messages, support, calls and everything yesterday...you all carry us when we cannot carry ourselves. We need all the support we can get at this time in our lives. Khloe feels each one of you. She holds you all in her little heart.

OOOOH BY THE WAY!!! GREAT NEWS we came home yesterday...after a long drawn out day, Khloe was put to bed by her dad, and we heard her screaming and crying, chris went to check on her--i heard this screams--so i panicked and went flying to see what happened --- Khloe went from laying on her back to sitting up!!!!!!!!!!!!!!!!!!!!!!!!!!! she amazes me! she also started clapping for herself in the past few days!!!  just wanted to share that with all of you!!! thanks again for all of your thoughts and prayers!!

I have been chosen

A friend of mine sent me a facebook message titled: " How you were chosen to be Khloe's Mom"  This is one of the most beautiful things i have ever read. I cannot begin to explain the different emotions i felt while reading this. Thank you Carine for sharing this with me!! 


To all of the other mothers of a special needs child..i know you will love this! enjoy!

Behold, children are a heritage from the Lord, the fruit of the womb a reward. Like arrows in the hand of a warrior are the children of one's youth. Blessed is the man who fills his quiver with them! He shall not be put to shame when he speaks with his enemies in the gate. Psalm 127:3-5

Erma Bombeck, 1980

This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over Earth. As he observes, he instructs his angels to make notes.
“Armstrong, Beth; son; patron saint, Matthew. Forrest, Marjorie; daughter; patron saint, Cecilia. Finally he passes a name to an angel and smiles, “Give her a handicapped child.”

The angel is curious. “Why this one, God? She’s so happy.”
“Exactly,” smiles God. “Could I give a handicapped child a mother who does not know laughter?”
“But has she patience?” asks the angel.
“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she’ll handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I’m going to give her has his own world. She has to make it live in her world and that’s not going to be easy.”

“But, Lord, I don’t think she even believes in you.”
God smiles, “No matter. I can fix that. This one is perfect.
She has just enough selfishness.”
The angel gasps, “Selfishness?
God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, there is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a ’spoken word. She will never consider a ’step’ ordinary. When her child says ‘Mama’ for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations. I will permit her to see clearly the things I see – ignorance, cruelty, prejudice – and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life.”

“And what about her patron saint?” asks the angel.
God smiles. “A mirror will suffice.”

May 7,2010 On this day, at this moment, my life & my family became complete!

To the Left...To the Left...

Now Khloe is learning how to use her abdominal muscles, spine and hips while standing!

Khloe is such an amazing little girl. She is just so perfect. maybe thats why i have such a hard time listening to people talk about her weaknesses, or her inability to do certain things--according to what the world views as  'normal'. Milestones are becoming so overrated. i dont care what any doctor or therapist or neurologist says, Khloe is perfect. no one can tell me different. Just because she may not sit up when the charts say she should,or roll over the way the rest of the world does, or balance her weight the way doctors would like her to, doesnt mean a damn thing to me. So what..she gets stiff, her tone fluctuates, shes a little delayed on her milestones, maybe she has some feeding issues, or shes extra tiny...who cares. shes perfect. this little girl has shed more light on this world in her 9 months here on this earth than some people do in an entire lifetime. she has strengthened this family beyond measure. shown us how to have faith when we thought it was impossible, she has helped us realize that when we fall to our knees, and our hearts are filled with pain and sorrow, we are just in a better position to pray. who the heck are you people to point out so many imperfections!!! shes just a little girl, who is doing things at a different pace...jeesh!

Ok im done screaming at my blog! if you couldnt tell, i read the paperwork from her PT for the neurologist. big mistake. now i want to beat everyone up!! I know, and i have to always tell myself this when i read through those heaping piles of paperwork, that they are meant to help Khloe. they are meant to point out her weaknesses so we can better help her. i know this. but it still breaks my heart. i mean just when i feel like we are moving mountains, we start to take steps back. Khloe is regressing in some areas physically. she has a dominant weakness in her left side, but recently it has gotten worse. her brain is ignoring the left side of her body pretty much. its almost like it doesnt exist. if you watch her crawl, she wont acknowledge her left arm until its underneath her and becomes uncomfortable. the discomfort serves as a reminder to her brain--basically saying "Hey...I am still here..pay attention to me" and then she will move it. she is still very,very reliant on her hypotonic movements and uses them very much to her advantage. the more she wants to do things, the more she figures out a way to use her stiffness to do them. which is a very bad thing. we cannot have her relying on her stiffness. everything in this report is freaking bad! they FAILED to mention how much better she is doing with putting weight on her legs, or how shes doing better sitting up!! what the heck!!! but worry not, I WILL mention it!! even if just to make myself and Khloe feel better.

Khloe is working on using her Left hand in this picture, reaching for objects and holding them!

I will spend the next couple of weeks trying to help Khloe's brain realize that there is a left side to her body...and it works just like the right. Not exactly what i ever imagined i would need to teach my child...but hey-this is part of this whole journey. this is what is going to help my little girl. things could be a million times worse. each time i start to feel down i try to remind myself of that. it keeps me pretty focused. I have great people that remind me continuously that things could be so much worse. I keep focused an each blessing that comes our way. I focus each day on my little girls smile, because that toothless grin tells me she is happy. I cannot wait to be able to throw a ball to Khloe, or run around the park with her, show her how to jump rope, or dance like crazy (because thats our favorite past time in this house) all over the living room, its going to be the best feeling in the world, because she has overcome so many obstacles. and if the Lord decides Khloe's little sticks will never allow her to walk, thats fine too, because she will still do EVERY single thing her heart desires. EVERY one of them. She will know no limits. We, in this house, teach our children that their lives are limitless...if you want it..go get it. nothing is impossible. Khloe is no exception to that rule. just because these doctors see her as 'different' doesnt mean a thing...we only see her as Khloe.

I wanted to share with you all a video i saw about a year ago, but recently i have watched it probably more than a hundred times, for me, it is an inspiration, a reminder, and mostly, its comforting.  a year ago when i watched this, i cried my eyes out, i was pregnant with Khloe at the time. I had no idea a year later, Khloe would share the same diagnosis of  'spastic quadriplegic cerebral palsy'  as this man, Rick Hoyt. Rick has an amazing story that i read often. Though you may see this as heartbreaking...this is heartWARMING to me. i hope you all enjoy!




 * you may need to scroll all the way down to the bottom of the page and pause my blog music to hear the video music*

For more info on the Hoyt's Journey check this site out  http://www.teamhoyt.com/about/index.html