Simple Reminders

"Acceptance doesnt mean giving in or giving up; it means giving all-your hopes,sorrows and worries to God"-Acceptance Thrapy

Its funny how i notice things that i normally wouldnt have noticed before. Ever since we started our new journey, i have learned to take the time to see the smaller things, notice more, and just be more thankful. I find myself watching so many things fall into place. I find myself noticing the Lord working in our lives. Making his presence known. Not that it wasnt known before, but now i notice it more. i feel it. Its been a while since I accepted the Lord. I was in 2nd grade. Harmony Baptist Church had a group for girls called Pioneer Girls. My aunt Judy taught a class there, and she decided one night to bring me. I will never forget that night. I sat in a classroom in Harmony Christian School (which later became where i attended school) and did crafts, read the bible, met new people, and learned about God. I learned what a spiritual life was. My group leaders were Mrs. Nywening and Mrs.Terpstra... I had so many questions for them, and they had so many answers! That day, in that room, with those woman & my new peers, i chose a new life. 

Years later, i attended Harmony. I hated school there. I hated that it was so small. I hated the uniforms. But i must say, i met amazing people. My faith grew. I had amazing teachers. I had great people all around me. at the time i didnt appreciate it though. To this day, the people that i met in Harmony are the most supportive people i have ever met. I have recieved support from teachers,peers and other people who i attended church with. Harmony became more like a family (well most people).  I left Harmony after 9th grade, along with a group of others, and went to Minisink High School. Somewhere between then and now i lost sight of my faith. I never stopped praying, but prayers came when i needed something, and were few and far between. I never stopped believing. i just got a little lost. stumbled off the path a little. 

Khloe's diagnosis put me right back to where i needed to be. It showed me faith again. it taught me how to believe FULLY again. how to get my life back to a point where i now seek the Lord in all that i do. I no longer consult with others for advice, but find myself on my knees, asking the person who knows me best, what i should do. I seek wisdom through him. I have watched my husband's faith be restored.  I have watched him pray more. There is a new vibe in my house. it feels amazing. my marriage has grown even more beautiful. my patience is greater.  

Today, in our travels to fill out more paperwork, i prayed on the car ride that i wouldnt get upset. things are becoming so finalized. obviously because Khloe's medical costs and needs are increasing slowly..but will begin to increase quite rapidly once we begin to figure more things out, we were advised to apply for Medicaid. This way we will be free from copays and any denials for tests..and since she is now disabled, she is able to get it. (before this we paid privately for her insurance, chris job doesnt provide great benefits and they are costly, and we make far too much to get medicaid) we also needed to meet with our ongoing service coordinator, who will be helping us with paperwork and appointments and get khloe everything she needs. i knew today would be upsetting. so i kept praying. and i made it without crying. we headed home, and i felt myself getting upset. i could feel my heart start to ache again. i reached in my mailbox, pulled out a little package...and inside of it were some prayer cards, information on Padre Pio, a book called 'acceptance therapy" and a little prayer book..with a note from a friend, who thought about us enough to go to her church and get information on healing. Thank you so much Carine. Just when i felt that wave of sorrow, i saw this stuff, i read it, which then lead me to research Padre Pio and his beautiful story online, which then reminded me of my faith, and that im not alone. I didnt cry. I was brave. I had faith. God showed himself to me through Carine. 

Normally, before all of this, i may not have noticed God revealing himself to me, but i do now. I love it. Im blessed to have such amazing kids. each of them saved me in such different ways. Lexi- she saved me from myself. everyday that I am alive is because she changed me for the better. Moose--he showed me that miracles happen. When he was born a still born, and the doctor was yelling for a time of death- GOD gave him a time of birth. and his healthiness and his life are a true sign that miracles happen. Everyday I look at him, I know miracles are real. Khloe--she saved my spiritual life. she reinstalled my faith. she has shown me that things are out of my control...but they are in the lords control and thats better than what i can offer. each day i look at her, i am reminded of simple blessings. I am such a blessed woman. I have such amazing kids, the greatest husband, a wonderful family, and the most thoughtful friends, and most of all..i have a patient God, who waited for me to come back.

Understanding Khloe...

Khloe may have Cerebral Palsy...but Cerebral Palsy does NOT have her.

Tonight i wanted to give everyone a little more information about Cerebral Palsy, as i have realized that not too many people are sure of what it actually is..so here is some info i got from United Cerebral Palsy that will hopefully help you understand a little more about Khloe's condition. After you read all of this info, i talked a little about Khloe's personal diagnosis, so you can better understand what her journey may be like. I also added some extra quick facts at the end. Sorry if this entry is boring!!

Cerebral Palsy is a broad term used to describe a group of chronic movement or posture disorders. “Cerebral” refers to the brain, while “Palsy” refers to a physical disorder, such as a lack of muscle control. Cerebral Palsy is not caused by problems with the muscles or nerves, but rather with the brain’s ability to adequately control the body. Cerebral Palsy can be caused by injury during birth, although sometimes it is the result of later damage to the brain. Symptoms usually appear in the first few years of life and once they appear, they generally do not worsen over time. Disorders are classified into four categories:

Spastic (difficult or stiff movement)

Ataxic (loss of depth perception and balance)

Athetoid/Dyskinetic (uncontrolled or involuntary movements)

Mixed (a mix of two or more of the above)

Cerebral Palsy is a painful diagnosis to hear. It is also a medical condition that confuses parents and doctors alike. However, after thorough testing, a doctor should be able to tell you the “type” of Cerebral Palsy your child has. The classification depends on the severity of her limitations, as well as what parts of her body and brain are affected.

Below are the basic categories of Cerebral Palsy:

Spastic Cerebral Palsy

Spastic Cerebral Palsy is the most common diagnosis. If your child’s CP is “spastic,” her muscles are rigid and jerky, and she has difficulty getting around. There are three types of spastic Cerebral Palsy:

Spastic diplegia — Your child’s leg and hip muscles are tight, and his legs cross at the knees, making it difficult to walk. This kind of movement is frequently referred to as “scissoring.”

Spastic hemiplegia — Only one side of your child’s body is stiff. Her arms or hands might be more affected than her legs. On the affected side, her arm and leg may not develop normally. She may also require leg braces.

Spastic quadriplegia — The severest of the three, spastic quadriplegia means that your child is more likely to have mental retardation if diagnosed as quadriplegia. His legs, arms, and body are affected. It will be difficult for him to walk and talk, and he may also experience seizures.

Athetoid Dyskinetic Cerebral Palsy

Athetoid dyskinetic is the second most frequently diagnosed type of Cerebral Palsy. Your child will have normal intelligence, but her body will be totally affected by muscle problems. Her muscle tone can be weak or tight, and she might have trouble walking, sitting, or speaking clearly. She may also have trouble controlling her facial muscles and therefore drool.

Ataxic Cerebral Palsy

This is the least diagnosed type of Cerebral Palsy. Your child will have trouble tying his shoes, buttoning his shirt, cutting with scissors, and doing other tasks that require fine motor skills. He might walk with his feet farther apart than normal and have trouble with his balance and coordination. Your child may also suffer from “intention tremors,” a shaking that begins with a voluntary movement. For example, your child may reach for a toy, and then his hand and arm will start to shake. As he gets closer to the toy, the tremor worsens.

Hypotonic Cerebral Palsy

Unlike with other types of CP, you will notice that your baby has muscle control problems early in life. Her head seems floppy, and she will not be able to control it when sitting up. Her motor skills will be developmentally delayed.

It is suspected that this type of Cerebral Palsy is caused by brain damage or malformations that occur while a baby’s brain is still developing.

Mixed Cerebral Palsy

If your child does not “fit” into one of the above diagnoses, your doctor will consider him “mixed.” This is quite common.

Congenital Cerebral Palsy

If your child is diagnosed with congenital Cerebral Palsy, be aware that this is not a “type” of palsy, but rather it is a term meaning “birth defect.” In other words, your child’s doctor is saying that he developed Cerebral Palsy during development. It is not a condition that your child inherited from you or your husband or partner. And it is not caused by a medical error.

Erb’s Palsy

If any type of Cerebral Palsy can be attributed to a birthing accident, it is Erb’s palsy (brachial plexus palsy). According to the National Institute of Neurological Disorders and Stroke:

Although injuries can occur at any time, many brachial plexus injuries happen when a baby’s shoulders become impacted during delivery and the brachial plexus nerves stretch or tear.

If your baby has Erb’s palsy, he will have no muscle control in his arm; the arm will be limp and have no feeling.

Based on the nerve area that is affected, there are four types of Erb’s Palsy:

Avulsion — the nerve completely separates from the spine.

Rupture — the nerve is torn throughout but not from the spine.

Praxis/stretch — the nerve is damaged but not torn and could heal on its own.

Neuroma — scar tissue from an injury puts pressure on the nerve.

So now...after you have taken in all those little facts about the different types of CP-- I can share with you Khloe's diagnosis and hopefully you can better understand what we are dealing with and what she will be overcoming...

Khloe has Mixed Cerebral Palsy. Her condition is known as 

"Spastic quadriplegia Ataxic Cerebral Palsy"  As i said before, the severity is still unknown. Khloe's Cerebellum is still developing. Things will not get better from here, but can get worse until her cerebellum is fully developed which will be at 18-24months. Once she reaches that age, her condition will never get worse. This is not something that will shorten her life span. There is no cure for her condition. Khloe is not currently showing signs of being behind mentally. With her diagnosis, mental delays are common, but would have been noticed already. We are very thankful that she is happy, and healthy. While i know reading this seems overwhelming, I just wanted to remind you all, she is still the same little girl as she was before this diagnosis. I wanted to put this information out there because a lot of people have been asking me what exactly Cerebral Palsy is, and how Khloe is being affected by it. 

Thank you all for your concerns. I hope you learned something new about CP!!! 

here are some more facts about CP:

 

20% of children diagnosed with congenital cerebral palsy developed CP due to a brain injury during the birthing process.

 

Approx. 765,000 children and adults in the United States manifest one or more of the signs of cerebral palsy.

 

8,000 - 10,000 babies and infants are diagnosed annually with cerebral palsy.

 

Cerebral palsy is identified in 1,200 - 1,500 preschool age children each year.

 

Cerebral palsy is the second most common neurological impairment in childhood.

 

Spasticity of one or more limbs is the most common disability now associated with new cases of cerebral palsy.

 

45% of children with cerebral palsy also develop mild or severe epilepsy.

 

Of congenital disorders, CP has the highest life-term costs per new case,average monetary lifetime expense of living with cerebral palsy is approximately $921,000 more than a person living without CP.

 

The degree of disability with CP is: mild (24.9%), moderate (43.8%), and severe (31.3%).

The motor disability is: diplegia (36%), hemiplegia (20.5%), and quadriplegia (40.5%). 

 

59% of families with a CP child have an income of less than $30,000 per year. The child's medical care costs are assisted by Medicaid in 63% of families. 

 

84.5%  of children with cerebral palsy receive physical therapy 6 times a month, 50% receive occupational therapy about 5 times a month and 37% see a speech therapist about 5 times a month.

 

A twin pregnancy results in a child with cerebral palsy 12 times more often than a singleton pregnancy. This is generally due to low birth weight and prematurity associated with twins.

 

Swedish data indicate that 36% of infants with CP were born at less than 28 weeks gestational age, 25% at 28-32 weeks, 2.5% at 33-38 weeks, and 37% at term (40 weeks)

Italy Vs. Holland...

I was given this analogy on raising a child with special needs by another person who shares a common journey as the one my family is on. When i read it, i was immediately brought to tears. This is the perfect way of explaining everything, and the closest description of what this blessing has been like. I hope you all can understand a little better after reading this!

Geography is NOT my thing..but i tried to get my locations as close to accurate as i could!

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.

It's like this . . . When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michalangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes and says, "Welcome to Holland." "Holland?" you say. "What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I...'ve dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It's just a different place. So you go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned." The pain of that will never go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you will never be free to enjoy the very special, very lovely things about Holland. 




So with that, I want you all to know..we are enjoying Holland. We wouldnt trade it for the world. God had a different plan for Khloe, and we wouldnt have it any other way. THIS is who GOD made her. It was no mistake. Its just going to be a little different than we are use to...but different is good.

Reality, Physical Therapy and Some Answers!!!

“Man often becomes what he believes himself to be. If I keep on saying to myself that I cannot do a certain thing, it is possible that I may end by really becoming incapable of doing it. On the contrary, if I have the belief that I can do it, I shall surely acquire the capacity to do it even if I may not have it at the beginning.”

- Mahatma Gandhi

Today Chris and I were smacked with a large dose of reality. Obviously we know the road that lies ahead. we knew what we were facing going into today. we had a diagnosis. we had heard all of the issues that were of concern. so we had a pretty good handle on what was ahead, at least i thought.  Through this whole process i have watched my husband go through a range of emotions. We have held each others hand through so many nights where we were drowning in tears. There has been so much said between us without either of us saying a word. We have developed this look over the past 2 weeks....when we see khloe having spasms or fluctuating her tone (she goes from a high muscle tone to a low muscle tone--basically meaning she gets very limp and lethargic to overly stiff to where we cannot move her) or using her muscles 'the wrong way'  (most kids realize that they can control there body when their limbs are bent and are able to use balance to help them maintain the position they are in--Khloe uses her high muscle tone (stiffness) to sit,roll,and move around, which is adding to her spastic movements in her limbs- her brain is not communicating properly with her body to tell her she CAN do these things while maintaining a normal range of muscle tone...if that makes sense) chris and i have this look that we give each other when we notice these things. its a look that says so much. Its a look of pain. worry. frustration. concern. and most of all wonder. I have began to accept that this is the hand of cards we were delt. i have learned to make the best of it (and i am still very much learning), I have learned that this is not going to be easy, but find great comfort in all of you who support us, the Lord, and mostly the comfort of my husbands hand. He just knows when to reach over and hold my hand. its a reminder that im not alone. i have another physical being, beside me, who just knows. Maybe i had assumed he had found some peace as well. his tears faded. his smile returned. he was coping.  or at least i thought he was. Today after the PT left, i watched a grown man fall to his knees.  I saw all of the air expel out of him like he had been hit with the hardest punch imaginable.  my natural reaction was to run to him, but i stopped, because for the first time ever, i watched him cry out to the LORD. I know my husband prays. he has great faith. he is born again. he believes. but today, i watched a grown man cry such a scared cry, and beg the LORD for an answer. I listened to him repeat "why is this happening" over and over again in the next room.  I dried my own tears, and i prayed and searched for an answer. GOD please tell me something. give me something to offer him. when i was able to gain control over my own emotions, i went to calm him. after hugging him, he looked at me and said..."so this is it ... this is part of our life now" . reality had hit him hard. yes this is our life. therapy will be part of it forever. he calmed down. we ate dinner, watched some tv, and put the kids to bed. i could still sense something was bothering him, so after talking, i said to him...yes chris, this is our life. it may not be the life we imagined. but this is our life. and what better life to have? we have 3 HEALTHY kids. 1 may have some limitations currently, but she is HEALTHY! we have 3 brilliant children. at times, wise way beyond their years. we have each other.  we have a bond that some will never understand. a love people spend their whole lives searching for. we have GOD. we have faith. what more do we need? this is our life.  I did explain to him that while Khloe was diligently working in the living room, he was in the kitchen and lexi's room with Lexi and Moose, he was only hearing what was going on. he couldnt see all this little girl was doing. he was hearing me ask the questions i needed to ask, and he was getting discouraged at the answers. he was hearing negative things, but not actually seeing his baby girl sit up with her knees bent, the way she is suppose to. he heard them say she will most likely need a brace on her left leg because its not working the proper way, but he didnt see her stand up and put weight on those little stick legs, the proper way, not using her spastic movements, but starting from sitting and slooooowly introducing the weight. so what he thought was an unsuccessful session, was the most eye opening. once i explained this, and woke Khloe up to show daddy what she could do...his big ol' heart was like a big bowl of puddin' ...all mushy!!!

So Amy, the PT, was amazing. i really like her. i like her ideas. i like that she is optimistic and she doesnt limit Khloe. she never once said 'she probably wont walk' she never ever lost sight of how determined Khloe is. she was amazed at how receptive khloe was to all of these exercises. Khloe did  scream through most of it, but not because she was in pain, just because she became tired quickly. which Amy assured me was very normal given she has barely any muscle through out her body. Her whole body is being effected by her CP. I was hopeful that it was just her legs, but it is throughout. Khloe shows a dominant weakness on her left side. When she is standing and receiving weight through her legs, her left leg bends, and her foot turns in, almost as if her leg is trying to turn backwards. we have noticed this before, so it was not a surprise. Her balance is off, which could also be because she is cross-eyed (which is stemming from the low muscle tone (weakness or limpness) through her body) it WILL NOT correct itself. ever. those muscles, because of her CP will not get stronger. she will need surgery. we are in the  LONG process of attaining an ophthalmologist that her insurance will cover, and that is not too far away, and one that our pediatrician is comfortable sending us to. We also learned that Khloe will more than likely wear a brace on her left leg to help correct her leg, and allow her to retrain her leg so she can use it properly.  after watching Khloe today, i am so amazed. amazed at what this little girl has already trained her body to do in order to accomplish what she wants. NOW we must break those bad habits!!! I watched Khloe stand for the first time today, the CORRECT way. she went from sitting to standing (with help, she didnt stand on her own) she wasnt standing because we pulled her up, and she stiffened to maintain her stance. she did it the correct way!! she sat up, alone, unassisted, the correct way.  GOD is good.

So yes, we got some answers on how to help her. we got some answers on what is being effected. we learned that there is some hope that she will walk. Amy is confident that she will walk. she did say- it probably wont be on her own, but she will get there.  

Khloe before PT with the anointed cloth we got as a gift to help heal her.

I should say, the other day a woman my mother works with gave her a cloth for Khloe that had been anointed and prayed over.  She was very adamant on the fact that this would help khloe. I have never been one to believe in that sort of thing. i mean, i believe in miracles, but never on holy water, or things blessed. Before this session chris and i prayed with Khloe while she held the cloth. I rubbed it all over her--i mean hey, im willing to try anything. while we were waiting, i was taking pics and chris grabbed khloe buy the hands, and she put weight on her legs. i thought it was a coincidence until she continued to do it, the proper way, through out therapy.  i should also tell you that my mother received some poor test results regarding her health, results that could be life threatening, this woman also gave her a cloth...the day the cloth was given to her, she went for a follow up apt to figure out a plan as far as how they would address this health issue, the doctor tells my mother her previous dr read the results wrong. she was fine.  it could all be a coincidence-i chose to say its the divine work of my LORD!!!

Fear

“Fear can keep us up all night long, but faith makes one fine pillow.” -Unknown

Fear in my eyes comes from the unknown. The things i fear the most are things in which i have no control. things that i know will play a big part in my life or the lives of the people in my family.  Today I was scared. I still in a way am, but i have started to refocus myself, and remind myself of how far my faith in the Lord has carried me thus far. I knew Khloe was going to start PT this week, or i at least knew this week i would have a start date for the following week. I knew the phone call was coming. Today her PT Kim called. she wanted to know if she could come work with Khloe tomorrow at 5pm. Perfect time slot for me. i dont have to wake everyone up super early, moose is still napping at that time, and khloe is awake. she sounded really nice.  she also sounded very young. i understand that not every person in the medical field is old, everyone starts somewhere, but i felt a little weird trusting someone who cannot be much older than myself when it comes to Khloe's treatment. i guess i had pictured someone with a million years of experience behind their belt. maybe i expected some world renowned PT to walk through my door. i dont know. either way i was a little taken back. after i hung up with her, i felt scared. not because of her age, but i think i felt scared at the fact that this is going to open my eyes to more. i know what you are thinking as you are reading this---hey dumb dumb- you wanted to know more..and now you are complaining. i know, i need to make up my mind. i am just scared to see how this is all going to play out. im scared that she may not respond well. that this may not help. that this all could be worse than what i have made it to be in my head. im so scared.  what if this lady comes in and works with her for a year and tells me she will never walk? what if this woman reveals more details than i had originally noticed? what if khloe is actually worse than i imagined? i am so scared. what if i break down while she is working with khloe? i know you are thinking im nuts. why would i cry while shes receiving the help she needs. i am crying because she needs help. this is all becoming more real by the day. i dont think people realize...telling you all what was going on with her was just the start. those tears and the pain were just the start. each time i get a paper deeming her disabled, each time i get a phone call about insurance, or case workers, or therapy, its like pouring salt on an open wound.  So today, i was scared of tomorrows out come. scared of any new information. scared that i am putting so much trust in others when it comes to my child. its hard. 


i took some time after dinner to refocus myself. i got myself together, and i realized that i am worrying about something that hasnt even happened yet. something that is a day away. i cant do that to myself. i have to focus on todays tasks. what is happening right now. so after i gathered myself , i prayed. i prayed for the lord to keep me focused on my faith. because faith is what will guide me. GOD is not giving me more than i can handle. he is trying to show me what i am capable of. what Khloe is capable of. after i prayed i sat on the floor with khloe. i looked in her big blue eyes, and i felt the power of GOD. sounds cheesy right? sounds like i am making  that one up! but i am noti felt the power of GOD through my little girl. i was reminded that she would be ok. so now- as im telling all of this to chris- i let go of Khloe's hand, im yapping away...and he has this odd look on his face...and just as i get ready to yell because he is looking past me while im talking to him, i turn, and Khloe is sitting up. unassisted. no toys. no tripod sitting. her legs bent. no spasms. just sitting straight up. she sat for a little over 5 minutes! There have been so many proud moments i have had as a mother of 3... but today- was the proudest moment i have had yet.  it was so crazy because while she was sitting and i was paying no attention, i was telling chris how i felt so close to GOD when i was looking at her, and how i just felt everything was going to be ok! amazing.  


So tonight, i know many of you fear tomorrow, or fear things in the future, but this is proof that with faith comes great reward. Tonight-- Let go and Let GOD!  dont be scared. if you have GOD on your team--you are unbeatable. 

Doing things different tonight....

So tonight, instead of posting about my day- i wanted to do things a little different. GOD has sent some amazing people my way, especially lately since Khloe's diagnosis. One person in particular is someone i went to high school with. She has shared with me, and many others, through her blog,her family's journey over the past year and a half. You see when Erin was pregnant with her youngest son Grady she found out GOD spent a little extra time on him, blessing him with an extra chromosome. Grady has down syndrome. Erin's blog (and Erin) have been very uplifting and inspirational since our family's special journey began. I cannot thank her, or her ability to write, or even little Grady enough for all that they have done. Erin posted a blog entry today that really, really touched me. I would like if all of you took the time to focus on her blog tonight, and help her, and the rest of us, make Grady's first birthday wish come true. I will warn you....her blog made me cry. It is very touching, informative, and inspiring.  I wish that everyone who is blessed with a child that has a little extra something to offer, could see things the way she does. The world would be a much brighter place. Thank you Erin & the rest of the 'Ski family for sharing such a wonderful story, and for your constant thoughts of others. May GOD bless you always.

PLEASE CLICK THIS LINK TO GO TO ERIN'S BEAUTIFUL BLOG POST

http://skiingthroughlife.wordpress.com/2011/01/22/two-boys-two-days-one-year-one-voice/

Thank you all so much!

Hope and Resentment

"If you do not hope, you will not find what is beyond your hopes."
-St. Clement of Alexandra




I have neglected my blog for a few days, I am sorry! Each day i get quotes,sayings, and bible verses sent to my email, and its been so great lately because i feel like each day, they are speaking directly to me. Lately every thing i see i feel like it relates to what we are working towards or a situation that our family has been through. Maybe its because i have learned in the past week to take more time to notice the little things, or maybe its GOD just reminding me he is always here. the support we have received is overwhelming, and just astounding. I mean, obviously i know people care about us, but its amazing when you see first hand, everyone working together to hold us up when we cant hold ourselves, or to make us laugh, or leave a note, or even send us a card. I cannot say enough how truly blessed this family is. i know Khloe can sense everyones faith in her. this past week more than ever, she has had this drive and motivation to sit up and now crawl. She can get around, dont get me wrong, but its not what the psychical therapist considers "normal"  ... each day i grow to hate the word normal more. its hard to explain what she does to get from place to place (mainly to our dvd collection these days!) but if i absolutely had to try to explain it, i would tell you to picture khloe's head on an inch worm. she uses just the trunk of her body to 'inch' across the floor... and trust me, shes quick. i can already see, there will be no limits for her. she wont allow it. 


so today i found in my email the quote above about hope. its funny because these past 2 days especially, i feel hopeful. i know you are all thinking cerebral palsy doesnt really allow for much hope, and when you hear that someone has cerebral palsy you automatically think of a wheel chair, but thats not always the case. yes, a large part of people who have CP end up in a wheelchair at some point...maybe when they are 2..or maybe 92. either way, thats not always the case. khloe may never walk, and i fully understand that. but these days, i find myself thinking, khloe may walk. maybe she wont stand up on her own and take her first steps the way lexi or moose did, she may need assistance, but she may walk. that to me has been a big step in my thinking process. i feel hopeful. so as we have been working with her on her kneeling...because it will help build strength in not only her legs, but hips and spine as well, she been responding great. she is now poking her butt up and trying her darnedest to get up on all 4's! she still is not strong enough, and that i know wont happen overnight, but its progress!!! again, leaving me very hopeful.  I just know shes a fighter. I can tell by all that she does. 

*Photo by Alexis*  Khloe while she was 'crawling' around

In all of my hope, i have some selfishness...i wont lie. in the beginning of all of this, i kept hearing about everyones kids meeting milestones, gaining weight and growing, it was so hard to hear. i think a few times i almost smashed my phone or computer, because i just couldnt understand why 3 month olds were doing things khloe couldnt. why 8 week olds were bigger than her..comparing my kids to others causes me to get upset. not mad, but hurt. obviously. but it almost makes me resentful. i need help with that. i am sure its something else i will learn on this journey... but sometimes i just dont want to hear about everyone else's children doing so well. i have been praying for guidance, and wisdom so i know what to do in these situations, and how not to be so selfish. I want to be able to be happy for others, truly happy, and not just say it and grit my teeth to keep my true feelings a bay.


but as far as today goes, i am hopeful. because if i limit my hopes, i will become hopeless. so today, and from now on, i have no 'high hopes' because no hope will be too high...i have enough support, i have a hardworking family, and a determined little girl-- and we have the strength of the lord. separately we may be weak...but when all of us are combined...we can take the world on!!


i apologize for neglecting my blog for a few days...and also for making this blog a little pitiful--but i just wanted to get that out about feeling resentful and hurt. its something i have been trying to overcome, and hopefully this will help. thanks for listening!


*update* Khloe did receive the name of her PT it will be Amy from Austin PT in Roscoe, NY which is close to us... they are just finalizing paperwork and hopefully next week i will have a PT blog for ya'll to read!! and maybe more info on her specific type of CP!!!!

dreaming...

I guess everyone goes to different places, resources or people to get inspiration..for me, i tend to become inspired by reading. I like to see the world through other peoples eyes as much as i can. i like to feel emotion behind what i read. i like to feel like i have walked in their shoes...even though i havent. Today in my email among a million junk messages, one message in particular stuck out...it too was junk, but the subject, appropriately titled for the day, asked "what is your dream?" Obviously at first i didnt think too much into it..as the day went on and i started to think more about why my husband was home, and banks were closed, and my oil company wanted to charge a million dollars to come out today- i thought back to the title of that email. I thought about Martin Luther Kings dream. I thought about millions of different people who dream of different things. sometimes i think we feel our dreams are unattainable. Martin Luthar King--his dream-in his day-was probably thought to be unattainable..but today we look at a world where there is equality (for the most part). We have a president,who is bi-racial, the most powerful woman on t.v is african american, latin is becoming a dominant language,and like i previously blogged about people who the world views as handicapped are no longer confined to institutions. Obviously we still have a long way to go..but because of this man's dream... I have a best friend who is black,  my oldest child is bi-racial, i have a child with a special journey ahead and my husband and i  are able to lead her through her journey. All because of 1 mans dream.

I started to think about my dreams. often, people who look at this crazy life i lead, think because i am not at work, or because i didnt go to college, that i am unsuccessful. and yes, some will BOLDLY state that. however, when i was little, i too had a dream. maybe it hasnt been as well known as dr. kings dream, but those who know me, know it as well as his dream. you see,  my friends dreamed of degrees,professions and paychecks, while i had my own dream. i pictured my life as a mother, a wife, and a best friend. i carefully pictured my husband, planned my wedding, and envisioned each of my children. there would be 3. though i didnt want girls because , well, because i knew what i would be in for. karma is a very real thing. That was my dream. a family. Obviously, being young, i always thought every person was able to have children, biological (i hate that word) anyways. I thought it was easy to get pregnant. Easy to find a husband...you just pick who is the cutest, right? oooh jackie, if you only knew! As i posted in my last blog, i had a long journey to get to where i am. to where i have attained the unattainable...at least according to medicine. My mother was given the news that I probably would never have children when i was young, i think 12 or 13. If i did get pregnant, it would be rough. I had endometriosis. I dont remember if i heard the doctor, or if i was just still so embarrassed from the exam that i tuned everything out, but i dont remember it having an effect on me, except having to be on birth control to somewhat help ease the symptoms. Later in life, it effected me. when i began to try desperately to have children. i failed each time. I was told the good news was that i got pregnant. anyone who has sat in that doctors office after losing a child knows thats not what you want to hear. because no matter how many weeks, thats your child. after a number of miscarriages and genetic tests, it was determined that i had an incompetent uterus, and now i would not have children. I would never achieve my dream. I cant explain what i felt on that day, because these days i cant remember much of life before my children. almost like i began to exist when they were born. when i had given up, not put much thought into it, when i didnt care about love, just myself. when my life was spinning out of control, i was shown that dreams come true. definitely not with the person i had dreamed of, i always figured i would be in love, or married, and that was far from the case. but for whatever reason, GOD had another plan for my life, and the order they would happen in.  Lexi, she was the start of life. she was the first stepping stone to attaining my dream. and it was in every sense perfect.  no, it was not the ideal situation. no, it was not an ideal person. but i knew, that was the start. it was not an ideal pregnancy. I fought like hell to hold on to her at times. there were close calls, times when the doctors had already told me i lost her, only to see a heartbeat on an ultrasound..my mother can appreciate that story..and get a good laugh. there are some gross details that arent for a blog, but looking back, it does provide a really good laugh...im just happy my mother has forgiven me for that night...hahaha.  sorry mom. during my pregnancy i met a wonderful man...i remember telling my mom that he was so different, from the first time i met him. during my pregnancy, chris and i were best friends. we spent every minute that we could together or on the phone. one day, i realized i loved him. i realized that i was capable of loving again, regardless of the past. for the first time ever, love didnt hurt. it was easy. natural. and it still is. on our one year anniversary, after asking my parents first, chris proposed to me, in a beautiful botanical garden. in true jackie form, i ruined the proposal, but it was still romantic. a month later, we were married. i knew my heart was finally safe. we both wanted more kids, and struggled getting pregnant again. but god again reassured me that dreams do come true. a little less complicated then my pregnancy with lexi, i carried our son to term, and had a beautiful baby boy. i was certain that i changed my mind about having 3 kids...because 2 was CRAZY!!! one fine day, out of the blue, very unexpected, GOD blessed us with another little girl.  after coming home from the hospital, i was on an emotional high. it was a very euphoric feeling. I couldnt stop thanking the man upstairs. I couldnt thank chris enough for helping me reach my dreams. time went on, and i would find myself saying...i need a new dream. now what? today i figured that out...

what is my dream? today i watched Khloe pull herself up to sit up. to get herself closer to her dad's shiney cell phone. When she got herself up, she flopped over. Though her arms and neck are strong, her spine and legs are not. she laid back on the ground for a second,  chris and i let out a little chuckle because our smiling baby made a mean face. she was mad. i mean really mad. she wanted that darn phone. again, she pulled herself up. again she fell.  she continued this for 8 or 10 times. she was determined. you could see the determination in her face. she would not accept that she just wasnt strong enough. while i wish i could tell you that she did sit up eventually, she did not. BUT, seeing her determination first broke my heart, but then reassured me, that she is a fighter. she wont take no for an answer. that was one of the things that probably annoyed my parents the most about me, i didnt like to be told no. more so than most kids, when told no, i fought it. i saw that in khloe today. what an amazing trait to pass down to her. im sure at times, probably 12-15 years from now- ill kick myself in the ass for saying that, but that is going to be a great part of her reaching her dreams. the more people to tell her no...or she cant...she will. today my dream is that Khloe will prove everyone who says she cant wrong. that she will overcome all that this world sees her incapable of, and show them that she is more capable than most. because she is determined. I dream of success for each of my children...but especially khloe who is currently facing the most challenges. I pray the lord helps this family makes my dream come true again, because it is each member of this family who helped my 1st dream come true. Without any of them, my dreams would be incomplete. so i know, each member, working as a team, will make my hearts wish come true again. Khloe will sit up. she will. and when she does--you will all hear my screams of joy blasting through the windows of your houses!

We haven't quite got the family portrait thing down yet, but this was from
pumpkin picking this year. Im not too sure what is going on with Khloe's hair!

so do you think i should have hit reply to the sender of that mass advertisement email and answered their question? i mean, they did ask.

New Page Header

I wanted to thank Erin for making me a BEAUTIFUL header for my blog! She does amazing work!!! Please also check out her photography sites :
http://www.eveswishphotography.com
http://ewphotography.zenfolio.com/

I am still so new to this blogging, and was just saying today how  I needed to spice up my page..Thank you so much Erin!

Institutions and Frog Legs...

I want to start off with a bible verse that I was sent today. It really spoke to me as I began to think about what a disability is. 


“Now you are the body of Christ, and each one of you is a part of it.” 1 Corinthians 12:27


Today was my first day home alone with the kids since Khloe was diagnosed. I liked it. in fact, i loved it.  i enjoy chris being with me, because he obviously understands me, but there was comfort in the silence. today, i sat by myself and thought about people, not just with CP, but with all different forms of "disabilities". God has put me in contact with amazing people.  most of you know, i have an uncle who passed away when i was 8 from cystic fibrosis. he was 26 years old, little unlce jay. my uncle was a little guy, but mighty. mighty in every sense of the word. he faced the world with passion,bravery,humor, joy and love. chris and i have spent the last 2 years trying to do our part to help raise awareness and money for '21 roses'  which is a foundation for children with CF. this has allowed me to connect with great people via the internet. I also was contacted recently by someone who i knew in high school , and in the past 2 days she has touched my heart and soul more than some people that i have known my whole life. She too has a journey ahead, as her son who is about the same age as khloe has down syndrome. i admire her, and hope that one day, i too will be strong like her and her husband. they tell a beautiful story.I have another friend who holds a very special place in my heart, her daughter was just diagnosed as profoundly deaf. She too is my age, and knows my pain and struggles. She and her family have a journey ahead too, as they learn new and exciting ways to communicate. She inspires me to want to learn more. She always has words of wisdom and knows how to heal my heart in moments when i really need it. when i was pregnant, my cousin tiffany got me started on babycenter.com, i have used their support groups when i first had a DX of a  subchroionic hemorrhage in m uterus- tiffany aimed me back there (as did some others) when i found out about Khloe. I have met wonderful wonderful mothers, all with the same feelings i have.  I thought about all of these people today. What a wonderful gift to be surrounded by, differences. We often think of differences as things we shouldn't focus on. We should just look past them. our parents teach us not to stare at people that are "different" because you may make them feel different. so when we walk into a store and see someone in a wheelchair or someone who may be using sign language, or an autistic person who is yelling or panicked, we look the other way. out of sight out of mind, right? wrong.  Why dont we stare at the beauty? if a person who you found visually  attractive to you walked by...would you stare? would you care then, if it made that person feel different? Why does it become so hard to look or talk about differences? In researching some things today i found how far we have come when viewing people who are disabled. A few years ago, most people born with impairments had to live in institutions. An institution is like a big hospital. Some of these institutions were very bad places, and the people who lived there were treated more like animals than like people. Other institutions were nicer, but even so, living away from home was very difficult for special-needs children. They couldn’t stay with their own families or have their own bedrooms. The only people they lived with were other people with impairments and the nurses who took care of them. Would you like to live that way?

How silly it would be if we decided that every person with glasses or contact lenses had to move into a big building together. They would have to sleep in large rooms with many beds. They would have to eat at long tables, and could not choose what they would eat. They could leave only for weekends, and only if a relative would come to take them out. You people who are wearing contacts and glasses would be very upset, I’m sure, especially if you were forced to go. That must be how people with impairments felt when they were put in institutions.

Thankfully, there are not many of these institutions left. God intends for us to live together in our families and communities, without separating anyone who is different. God has led us to understand that we all need each other. Special-needs people help us to see God’s work, to increase our faith, to have hearts of compassion, and to praise God. Why would we want to separate these people from us? I feel so blessed to have learned this. I am extra blessed that my child does not have to live that way, I pray for those who still do, and grieve for the ones that have.

In all of my thought today, I have finally read Khloe's DX. I have read her eval summery and all those fabulous (sarcasm) things they had to say about little Khloe. I think, how can you look at my baby and see so many things wrong. I get it...they are medical professionals, and reports are not geared for emotion but for information. I understand they are written in a way that fully describes her inabilities so we can focus on them...but jeesh could you not say one thing to make a mother smile?  In conclusion they determined that she has 'frog legs' which gave me a good laugh.  frog legs? this woman is very lucky that i happen to like amphibians. i have no idea why of all things frog legs stuck out... so when i read 1 Corinthians 12:27 i have decided that khloe is the frog leg part of the body of christ. i guess there are worse legs to have....after all she could have mine. 

72 hours past diagnosis-72 hours into faith

You are my hiding place; you will protect me from trouble and surround me with songs of deliverance. (Psalm 32:7-8)

Artwork from my favorite poem "Footprints"

Its been 72 hours since I heard those life changing words, Cerebral Palsy. Its been 72 hours since i have realized what complete faith was. Today I am ok. Last night, I had what seemed to be my first anxiety attack. I was suddenly uncontrollably, inconsolably upset. Today, I woke up with restored faith. Moments were hard. But when I cannot take things day by day-I will take them hour by hour- if thats still overwhelming-minute by minute- and on that rare occasion where that is still hard- second by second. You see- this has been an amazing 3 days. I feel like each hour has counted. I have not slept more than 5 hours (which believe me-is not a pretty sight), so when i say each hour counts, I mean it. I have had a ton of emotions, but the one I continually go back to is blessed. Yes, Blessed. I have replayed each hour of Khloe's birth. All events leading up to it. Everything after it. I saw no trauma. none. My sons birth-that was trauma. that was hell. Khloe came in like a lamb.Maybe there is something I missed..maybe not. At this point in my journey, thats all irrelevant. I dont care. Knowing what caused this is not going to change it. This is a blessing. Its not a burden. Again- its NOTHING to be sorry for. This has renewed my faith. This has encouraged my husband to have faith. This has shown us how strong our love is, and how strong it will get. This has shown us a side of ourselves that we may never have known, this has shown us GOD in the rawest form, trust in the hardest times (so far), this has shown me who people really are. It has connected me to some amazing, and i mean amazing in every sense of the word woman. Mothers who know what i feel. Mothers who know worse feelings. Mothers who still have faith. Thank you Jesus. Thank you for this journey. YOU raise me up. Through you- I am able. I am willing. I am strong. I looked at Khloe today, and i saw all of her 'symptoms'  (i need to find another word) I saw what made me call early intervention sooner than i had originally planned. I saw her spasms. I saw her stiffness. I saw things i have chose to turn my head from in the past. It was amazing. Amazing to see the people I love hold her, notice these things too, ask about them, want to learn how to help her spastic movements. It was beautiful. Today I felt hopeful. Hopeful that with all these people eager to learn and help her, that we will beat the odds. My child may never run next to yours on a soccer field. She may never ask for my help walking down stairs. She may never eat soup..(lol mom) She may never live on her own. She may never know what its like to dance. She may never put on her shoes, or tie her own laces. She may never be able to cut her own food, or feed herself with a fork. This is in GOD's hands..as she is. Only he knows her plan. But I know, I am strong. I will be. I may be weak today, but tomorrow I will wake stronger.  I may have set backs, but I will give Khloe a life she deserves. A perfect (as perfect as it can get) earthly life. I will help her do all the things she desires. I will help her overcome all of her fears, insecurities, and instill hope, faith and love in her. She has shown me so much in these past 72 hours.  More than i have ever been shown in 27 years. I previously said that my world stopped... i would like to retract my statement, my world didnt stop, its just spinning in a different direction. I think that today I am willing to admit, to everyone, there are parts of Khloe's diagnosis that we have kept private. There are answers to questions that people have, but for right now, thats a personal part of our journey. So if there are some things not making sense to you, we have probably withheld some information. Maybe because we feel like admitting it--its throwing in the towel. Maybe because saying it out loud will cause some to lose hope-- but just know--we know. So when we are both ready to share some more details, we will. But for right now- its something very personal. Something Chris and I need to deal with privately, before publicly. We need to become secure in certain parts of this process before making everyone else secure.

The last thing I wanted to share are the lyrics from Josh Groban's song "You Raise Me Up" This song has been a constant inspiration to me...and I cannot find a better song to express what I am feeling..

When I am down and, oh my soul, so weary;
When troubles come and my heart burdened be;
Then, I am still and wait here in the silence,
Until you come and sit awhile with me.

You raise me up, so I can stand on mountains;
You raise me up, to walk on stormy seas;
I am strong, when I am on your shoulders;
You raise me up... To more than I can be.

You raise me up, so I can stand on mountains;
You raise me up, to walk on stormy seas;
I am strong, when I am on your shoulders;
You raise me up... To more than I can be.

There is no life - no life without its hunger;
Each restless heart beats so imperfectly;
But when you come and I am filled with wonder,
Sometimes, I think I glimpse eternity.

You raise me up, so I can stand on mountains;
You raise me up, to walk on stormy seas;
I am strong, when I am on your shoulders;
You raise me up... To more than I can be.

You raise me up, so I can stand on mountains;
You raise me up, to walk on stormy seas;
I am strong, when I am on your shoulders;
You raise me up... To more than I can be.

You raise me up... To more than I can be.


one more thing....
(Psalms 138:3) 3 In the day that I called, you answered me. You encouraged me with strength in my soul.