Love and Thanks

   

Love. My heart is very heavy tonight, I just want to write and let it all out. Kaylee my precious, precious child oh I have no words to say only tears, tears of joy, tears of fear, tears of LOVE! Kaylee is 19 months now and we are fastly approaching her first charity event, A Walk for Kaylee. My sweet sister who is now in the 11th grade at Bethlehem High school made a suggestion to her FCCLA club to have a benefit for her niece, and oh how that one suggestion turned into an all out huge charity. The Lord uses us in incredible ways and he put this thought in Savannah Miller's mind over a year ago to organize all of this. I can not thank you enough and the whole FCCLA club of Bethlehem High School.

Kaylee is only a work from God that is the only way I can explain Kaylee and all the people living with this condition. You take a child born with half a leg and no hip or knee and tell me honestly tell me how it is physically possible to walk, to run, to dance, to climb, to do every single thing a normal 19 month old would do. Only through God! You know I have been praying for Kaylee's miracle for so long, before she ever even thought of walking and look at what God has accomplished though her. Let me say this, how can a child be born with a physical handicap and still be completely normal in every single way! Let me just say this if I didn't see it for myself everyday I would have never believed it, honestly before God gave me hope and came into my soul I thought just being honest, I thought Kaylee would be in a wheel chair until her leg was lengthen.

This world is beautiful, I know it's so hard to see because we are surrounded by negativity all the time, thought the media, the people we surround ourselves by, all of that just gets in the way of how beautiful we really are and how beautiful this world is that God so generously gave us. I am saying this because I have seen true complete beauty in the town and surrounding towns where I live beauty is here, peace is here, to me this would be the closet place to heaven I could imagine. To the people of Bethlehem and all surrounding towns around us, this has even reached people in England I might add so let me say that to all the people that has been involved in saving my child's leg let me just say from are whole family THANK YOU!! Thank you doesn't seem like much I truly feel as if I should give it all back to you in someway but as of tonight thank you is all I can say! Beauty is within you all, God is within you all only God told you to do what you have done and I know many, many blessings will be poured upon all of you because God never goes back on his word! In me saying that God has put it in my heart for sometime now that he will heal Kaylee, so I am anticipating that glorious day so please people keep praying for my little girl because let me tell you all who has prayed in the pasted and is praying now for her, whatever it is you all are doing it's working beyond belief it's working! I could write all night but I better stop, so I just want to say thank you, thank you, thank you, I can't say it enough to all the people that has helped out with this event for Kaylee and for all the many people out there who are praying for Kaylee. From the bottom of our family's heart THANK YOU and may God bless you all, Kaylee's leg will be safe and it's all possible from you!!!

I felt you Jesus

o

I was going to post this on my facebook page but this is something I want to post so everyone in this world will know what happened and it is something that can happen to everyone who believe!

I watch the 700 club every night before I go to bed and they was praying a healing prayer last night.  I was in my living room just me and I was holding my precious Kaylee, they said place your hand on the area of the body that needs healing so I placed my hand on Kaylee's leg.  They said with two hands, with two people pray and believe the same thing it shall be done.  It was just me placings hands on Kaylee everyone else was asleep the show was over and I was still caught up in the moment, still praying, shaking, crying out to our Lord and something happened.. Something in Kaylee's leg moved it felt like a finger from the inside of her leg touching the palm of my hand, I was not scared I knew what it was it was Jesus.  My hand was the only hand placed on her, then with two hands she was prayed on.  My hand and Jesus's hand.

My life is changed forever now!  He is real, believe that people he is real in the flesh he lives.  Oh I just want everyone to know who doesn't know Jesus still lives with us everyday.  I felt his hand like I was feeling the hand of a living person.  He can touch our lives if we just let him.  I believe now more then ever, Lord I will never ever doubt you I felt not just with my heart but by your touch, I was praying for a miracle for my daughter, she will be our miracle but not only are you healing her you have healed me, I will never be the same and all it took was one touch of your hand.   Believe everyone just BELIEVE!

I can move mountains

I must say reading the Bible has transformed my life I am a new woman full of life and love, love for all around me, Jesus lives within my heart and all I know is love. My Lord and Savior I say to you how is this possible how could I come from this shy, insecure, scared to speak, scared to love girl into who I am now. I understand now who I am suppose to be and how I am suppose to serve you and I love it and look forward to it everyday for the rest of my life!
I realize my last few entry’s has been not only about Kaylee but about me growing in the Lord, and me growing in the Lord is what’s going to heal Kaylee and heal me and hopefully those around me. I am going to act on what the Lord is telling me so hear it is. I believe with all of my heart and soul through the Lord Kaylee can be completely healed, her leg can be restored, her life can be restored and why I say that, because Jesus did this to many and he can do this to Kaylee with faith. People miracles are real event today they are real, Jesus still lives and if we call upon him he will answer. Yes I fully understand it may not be the answer I want but he will answer to what benefits me the most.
Let me just tell you a few story’s as to why I feel this way, I have surrounded myself with miracles. If you would of said a few months ago let’s just pray that Kaylee’s leg would grow in my mind I would say this is impossible! Oh boy it is possible, very possible! Miracles, event today miracles all around us and we don’t event realize what they are. Still till this day children are brought back to life, the blind can suddenly see, the deaf can suddenly hear, still protected hands over us.. Amazing!  A few weeks ago I had just started asking the Lord of this to let Kaylee’s leg grow but I started doubting this and almost feeling bad that I am asking such a thing from the Lord, and suddenly this woman I have no idea who she was I had never seen her before came up to me and asked “was your child born this way” and I said yes she was and she said “ I had went down south and attended church down there and there was this man who was born with a short leg” me not believing what I was hearing I said yeah what happened and she said “ we prayed over him for 3 straight days and you know what” and my month was standing wide open I said what “ she said his leg just shot out and grow to the same length as his other leg, he walked out of there on both feet!” Oh I was so shook up I could not believe what I had just heard I just wanted to break down in tears and say thank you Lord! He did it he put the faith back in me and let me know never ever give up. He is all mighty!
Well it just so happened that I am reading the gospel of Mark right now in my Bible and WOW! I am amazed! Jesus healed all who asked him, and that’s just it ask and you shall receive if you have enough faith and enough hope Jesus will hear your prayer! Jesus said “Have faith in God, if anyone says to this mountain, Go throw yourself into the sea, and does not doubt in his heart but believes that what he says will happen, it will be done for him. Therefore I tell you whatever you ask for in prayer, believe that you have received it, and it will be yours. And when you stand praying, if you hold anything against anyone, forgive him, so that your father in heaven may forgive you your sins.” (Mark 11: verses 22-25) I love this what Jesus is saying here.. We can move mountains if we just believe! Never ever doubt the impossible, because everything is possible if we just believe. I just want to say to anyone out there reading this yes my daughter is handicap and I believe with all of my heart she will be completely healed with whatever God wants of her, but this that I am saying is not just to heal her but to heal all of us we are all damaged, she has the greatest gift of all Jesus lives within her, she is a pure soul as is all of the children of this world,  we shall be pure as well. You or someone you know may have a illness or a physical handicap that you have been asking our God to heal, but this life on earth I feel is to worship the Lord and prove your faithfulness, that’s all that matters as Jesus says in Matthew5: verses 30 “And if your right hand causes you to sin then cut it off and throw it away. It is better for you to lose one part of your body then for your whole body to go into hell.” This verses was totally off my subject but it just assured me that our bodies do not go with us to heaven and we may have many things wrong within us but it does not matter all that matters is our faithfulness to our Lord!
So I just want to concluded by saying please everyone listen to me, pray for what you want, anything, and have faith, except Jesus and feel his love and peace. It is amazing all the things we don’t know until we do this, until we except our Lord and want to work for him everyday. Jesus said (Mark 5: 34) “your faith has healed you. Go in peace and be free from your suffering” I ask of you my Lord please be with anyone who reads this may you touch their heart and let them know there is nothing impossible if they just have faith, and know you are their savior!

PRAY, ASK, BELIEVE, FORGIVE!

Decisions

Tonight I am feeling so many feelings I just have to get them all out! I took Kaylee today to get fitted for a new prosthesis, this one will be alittle different then the shoelift she has now. They had to take a mold of her leg and have her fitted for a brace that her whole leg will fit into, then she will have a extendable pole on the bottom with a false foot. This may look alittle funny to most but it is going to be so much easier to move around without having that bulky shoe on.
While in the waiting room at the prosthesis place I see pictures all around of children with prosthesis, missing their leg or their arm or event both. While looking around all I could think was this isn’t so bad! Is my mind changing could I go ahead with the amputation and not put Kaylee through all the pain and suffering of these lengthening surgeries. Just to update those who are reading I have an option of doing the lengthening surgeries or having Kaylee’s foot cut off and her wear a prosthesis the rest of her life. Let me tell you this is not an easy decision! One way or the other Kaylee is going to suffer, so what should I do, let her suffer physically by all the pain she will have to endure or let her suffer knowing she is missing half a leg.
Well I can see it two ways, God made her with half a leg, he gave her to me with half a leg who am I to change that. Other way if I do lengthening she will be normal one day, she will run with both feet on the ground she will be like everyone else just a normal person. OK me just saying that she will be like everyone else, no that’s not how she was made, that was not why God put her here to be like everyone else.
If I decide to do the lengthening I will always have in the back of my mind watching her suffer I am just doing this all for myself. I am just doing this to her so she will fit in and be normal, all of this is to make other people happy. She will be until she is 16 years old in surgeries painful surgeries, I’m not just talking about going in and fixing a bone wear a cast for a little while then your done. NO I am talking about opening her leg, sawing her bone in half putting metal rods though her separate bone’s then stretching them everyday for 8 months, stretching her bone, stretching her muscles and tendons. Just think how you feel when you pull a muscle in your back or get a cramp in our leg could you image the pain of what Kaylee will have to face, I sure can’t, and I would never want to go through that pain.
So I guess I can say pain is beauty am I right or as in Kaylee’s case pain is normal. Would you honestly go through pain just to be normal honestly? I don’t think I would if it was my decision I would say cut that foot off and give me a pole to walk on the heck with what everyone else thinks is “normal”! I think getting her foot cut off would be hard on me to have to see but I think lengthening surgeries is something I don’t have to see but Kaylee would feel every bit of it, lengthening would be harder on Kaylee then it ever would be on me! So lengthen her leg let her face the pain as long as she is normal I would do anything yes “I” because I am not the one in pain, but what does she think. She will never have a normal child hood we would have to leave our home move somewhere where she is not comfortable put her through all of this yes for “normal”.
I have a friend on face book that I have been talking to recently I will not name name’s but she has the most beautiful little girl who seems happy all the time, who runs and plays and does everything a child does with nothing holding her back. She has the same thing as Kaylee but her family decided on the amputation. She had it when she was little before she could walk and would never know anything different. It’s over for her no more pain no more suffering just living! How amazing is that, just to live and not worrying about the next surgery, the pain the suffering it will be gone and we all just move on. Yes I know I am thinking the same thing but what about Kaylee she will have to live with a fake leg the rest of her life, how could I do that when it could be fixed. Well let me just say not everyone is like me we are all different and different things work for different people, but for me I just feel like I would be fixing her leg for my own benefit. So I would know in the future Kaylee will be normal when she is 16 she can play sports, cheer, find a boyfriend have normal friends be popular, be accepted, be perfect, do you see? Perfect the word perfect, who in this world would not say that Kaylee is not perfect, because what is perfect? What is normal? You are? Sorry I hate to say it no one is! And I have heard that all my life, me trying so hard to find the word perfect! Looking everywhere pleasing everyone, doing everything in my power so people on the outside would see that I am perfect, just for acceptance. I know deep in my heart I am not perfect nor will I ever be, I may not be missing a leg but other things bother me about myself.
Kaylee is just the most beautiful person to me I can just see it in her eyes she is special with half a leg or a whole leg she is special! Kaylee I sure wish you could make up my mind for me you could say I am willing to go through the pain and suffering to be like everyone else or you could say leg or no leg I am no different, I am Kaylee not a leg! Lord I will leave it all in your hands I just ask you from the bottom of my heart please, please help me with this decision what road is the right road? My little Kaylee if I could just take your place I would, I would give everything I have to be in your shoes and take all the pain away, but the Lord knows you are a much stronger person then I will ever be and this will make you a great person to be remembered! Lord I need you now more then ever help me Lord please help me to make Kaylee’s decision.
DecisionTo lengthen be normal be accepted be like everyone else.
To amputation live the rest of your life with half a leg, but start now living your life.
God I need your help!

What is God trying to tell me?

After all my years on this earth I am finally reading the Bible. I have started many times trying to read and understand Gods word but as the many times of reading I have put down the Bible not to open it again. But in my finding of the Lord I have been looking forward to ever night sitting down and reading the scripture. I have come across a passage in the Bible that has been a little discouraging to me and I am not sure how to take it. My heavenly father what are you trying to tell me in reading this verse, am I worthy, is my family worthy, is this truly a punishment?

In Leviticus 21: 16-24, The Lord say’s “No man who has any defect may come near [ to offer sacrifices to God]: no man who is blind or lame, disfigured or deformed; no man with a crippled foot or hand.”

These are very powerful words, I understand the meaning of these verses they are a strict list of do’s and don’t for men entering the priesthood the Lord was telling to Moses, but what do they mean to me as a mother of a precious child born with a deformity? I am not sure is the Lord saying a sacrifices of these measures, will not be accepted? The Lord clearly says “ Do not bring anything with a defect, because it will not be accepted on my behalf.”

Well I did some heavy researching on this matter and here is what I found. These are some very inspiring words from people with disabilities, families of the disabled, and inspiring words from God himself.

First:

This is from a man in a wheelchair who has just read Leviticus 21, very moving.
“This passage can speak to us today, whether we’re disabled or not. As part of a “royal priesthood” (1 peter 2:9), God welcomes us into his presence, accepting us no matter how disfigured or deformed we are. But when we come before him in worship, we need to make certain that we have been washed in the blood of Jesus and our hearts are clean, harboring no blemish of pride or defect of impurity.
This is a wonderful explanation of this verse OUR HEARTS should be clean of all blemish and defect before we come before the Lord to worship.

Second:
Such religious images powerfully suggest that disability is not at all "abnormal," but that, indeed, all of us are struggling and wounded. All of us are somehow disabled, but giving.
My goal is not to convince you that you should care about disability through statistics or specific examples of families experiencing suffering or a sentimental view of rescuing families experiencing hardship.

Third:
But in loving God and soaking in God’s word you would love God’s sovereignty over all things and cling to all his promises for you SO THAT when disability enters your life – you will boldly and confidently and lovingly, with great anticipation and ‘as sorrowful yet always rejoicing’ cling to God in your circumstances or rush to welcome families like mine, to serve these precious families he has given as gifts to you with the strength God provides with the wisdom he provides with the resources he provides.
And not just to serve those with disabilities, but to be served by those the world and the culture considers expendable, weak, and worthless. To actually long for and seek out fellowship with those who are daily being destroyed and discounted because of disability. To understand and enjoy and soak in the reality of God’s purposes. To rise into your places of responsibility with this counter-cultural, God-centered reality: On the contrary, the parts of the body that seem to be weaker are indispensable (1 Corinthians 12:22).
　
Forth:
Disability is clearly an important issue to God
God states that He created some to live with disability
Disability and disease can be found in 40 of the 66 books of the Bible.
Jesus made disease and disability a central part of his ministry.There are clear instructions about behavior towards and by those with disabilities
Yes If disability are not acceptable then why did Jesus center his ministry around healing the disabled.
Fifth:
Let’s take a quick look at the Word:
John 9:1-3 As he passed by, he saw a man blind from birth. 2 And his disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” 3 Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him.
As helpful as these passages are, God has proclaimed his sovereignty over his human creation in many other places:
Psalm 139:13-16 13 For you formed my inward parts; you knitted me together in my mother’s womb.
14 I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well.
15 My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth.
16 Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them
Note: This provides particular hope for those of us dealing with a daily hardship – every day is known by God.) No surprises to God; only purpose.
John 1:1-5 In the beginning was the Word, and the Word was with God, and the Word was God. 2 He was in the beginning with God. 3 All things were made through him, and without him was not any thing made that was made. 4 In him was life, and the life was the light of men. 5 The light shines in the darkness, and the darkness has not overcome it
　
My Views:
These are very powerful words that have spoken to my heart. Jesus says “The works of God might be displayed though him“, Wow that is well said! I truly believe that Kaylee and all people with disability are sent to us to help the world see the beauty within. God has used my daughter Kaylee as a tool for us to get closer to him, and God is continuing to reveal more of himself to me through his word. I must say when I first read the verse of Leviticus I cried in disappointment but taking a closer look at the words of God and finding the words of other disabled people have made me understand why Kaylee is here, and why the Lord placed her in my life. I am more proud then ever to say yes my daughter was born with a disability, and yes are heavenly father accepts her as his own for he created her out of love in his heart. You are working wonders in my life Lord and I am listening to everything you are telling me.
　
　

Prayer for the Disabled

God of compassion,
in Jesus Christ you cared for those who were blind or deaf,
crippled or slow to learn.
Though all of us need help,
give special care to those who are disabled,
particularly those we name in silence...
By our concern may they know the love you have for them,
and come to trust you;
through Jesus Christ who came to heal.

Amen

And My Life Will Never Be The Same

First I must say I am excited to write today. It has been awhile since my last post, things have got in my way from actually sitting down and writing what’s on my mind, well I must not hold what I am feeling today in, I must make time to write what I am thinking today down, for what I am feeling has changed my life and I may never be the same again. I must say I was reading my blog this morning and all I have to say is how depressing is this. After today I will never be depressed about Kaylee’s condition again she is nothing to be depressed over but something to rejoice about! I have been felling some very powerful things happening in my life for awhile now but never have I told anyone what is going on mainly because I really didn‘t know what was going on. Well now I am ready and excited to share what has changed me forever.

My life has been changed by the Lord I have discovered him and all of his glory. These past few weeks I have been attending church, I have been very curious about the Lord and why people live their life just for him. In these past few weeks my relationship has grown stronger and stronger with Lord. I have found him and I see why so many people dedicate their whole life to him. Last night while sitting alone in my living room I was watching a movie on our savior Jesus Christ and then in that moment of seeing all he went through for us something came over me. I have had this feeling many times before but never like this, is was a much stronger feeling then what I have felt before this was defiantly the Lord. He was there with me I felt him move through me. What was going on I am all alone but someone is here, why am I shaking uncontrollable, why am I crying like this, why am I not afraid of this spirit? Then finally peace overcomes me, I was warm I felt a comfort I never knew existed.

While sitting all alone I found God and he is here for me and my family what ever the struggle may be through him we will find peace and all the reinsurance that we need, he is only here to help. Yes can I say it again I found the Lord and my life will never be the same! This morning I woke with a different outlook on life. This morning I AM HAPPY!! All of my worries are a thing in the past, yes I will probably still worry about Kaylee and what is to come in her life but it will not consume me. The Lord gave me this child not to worry about but to make happy and make my life happy as well. Whatever happens, happens and with the help of our Lord shall we overcome all worries, all struggles, and be happy.

Here lately I have been having many worries, right now my little girl is no longer a baby she is growing fast and becoming a very active child. We are having a hard time with her shoe, she does not want to wear and it breaks my heart to see her struggling with it. She is only 1 years old yes she maybe suppose to be walking but should I push it on her, should I just leave this shoe on her all the time and just hope that she gets use to it, or should I wait until she can ask for it on. Let me tell you she is very active and if it wasn’t for her disability she would be running all over the place, so is it just me holding her back not putting her shoe on her for my own peace of mind so I don’t have see her struggle with it. I sure don’t know the answer as to what I should do as far as her walking but I know all I can do is pray that she finds away to use it and I find away to be at peace with seeing it on her. She wants to go just like my 2 and ½ year old son, I can see her just watching him does she know that she can’t do all the things he can. I pray to the Lord to please let this shoe work please when she is that age and any age she does not feel limited she can do it all she is amazing.

I know just looking at her she is so determined she has already done more then I ever thought was possible so yes all she has to do is put her mind to it and she can do anything. So should I worry? NO, never shall I worry again, the Lord is with her every step she makes now how amazing is that! She will walk, she will run, she will jump, she will play can I possible say she can’t do that, never will those words come out of my mouth. We will all be right behind her through every step in her life. I must say I think to myself isn’t this funny how all that I have been blessed with in my life and all I have took for granted, Lord all you have to do is put this precious little girl with a small handicap in my life and bam my life is changed for the better and I turn my life to you Lord. I have been a person all of my life to take what the Lord has blessed me with for granted and take advantage of all I have, but now something as simple as waking up in the morning and putting my feet on the ground is something to rejoice about. I will never take advantage of your blessing again Lord.

To my precious Kaylee this was all because of you, you helped me more then you will ever know, you helped me find my place in this world, because of you I found God no other blessing is greater then that. Because of you Kaylee my life has changed forever, and now I am happy. To my Lord all I can say is wow What An Honor To Be Her Mother!! Thank you for putting her and my son in my life they are the best thing to ever happen to me, I am so thankful that you have allowed me to take care of them. Kaylee and Kenny you both have truly changed my life. Kaylee I hope that you change many life’s, that is why you are here because you are strong and you can show others see your life is not as bad as you may think, never take your blessings for granted. May the Lord bless all the children w/ handicaps in this world they are all put here for a good reason. Lord I will never ask you why again but now I say thank you for placing this wonderful child in my life. Because of this I have been set free, I am happy and no longer will I fear the unknowing of what is to come in Kaylee’s life. You will guide her through all her struggles, through her rough times, through all of her surgery’s, you will be right by her side through it all, and through her eye’s will I find the courage to face all that is to come and not to fear a thing because through her eye’s I see you Lord.

Fixable is not so easy

We did so much research on PFFD that I was just getting tired of looking at it! I read so much, there were so many decisions we had to make. Probably the easies thing to do with her leg was amputation, then there was turning her foot around and wearing a prosthetic so her foot would act like her knee, then the hardest was lengthening her leg but this would allow her to one day have both legs the same length. I knew it would be hard on her but lengthening was the way I wanted to go. I sure didn’t have all the information on lengthening a bone but in my mind it was something easy to do. Well lets just say I was wrong! All the research I was doing I kept seeing the name Dr. Paley come up, well then I started researching him and come to find out he is one of the best in the world at lengthening bone and he specializes in treating children with PFFD, event better news he was right here in Florida. So with no hesitations I called and made Kaylee an appointment. 2 months later we headed to West Palm Beach, FL to meet with Dr. Paley. That was such a turning point in my life sitting in that doctors office, it all came into prospective for me. There were kids all around us with the same and event worse conditions as Kaylee I finally understood this whole PFFD thing. It’s not something to be taking lightly for sure, there is some much involved this was very overwhelming to me. I finally seen Kaylee’s future and it was hard to coup with. They called us back to get x-rays of her leg, still till this day I cry every time they do this she hates it and I am always so scared of what all these x-rays are doing to her, my biggest fear is what if one day she can’t have children of her own b/c of all these x-rays. You never know, but I just have to put my trust in these doctors I just hope they know what is best. After a few hours of waiting for the doctor they finally called us back, he said she would need at least 3 lengthening when she is 4 years old, then 6 years old, then 12 years old and she would also need the super hip and knee surgery when she turns 2 years old. I was thinking “Ok this is easy right?” No, not easy at all here are the details, when she is 2 they will give her a hip and a knee then she will need to stay in a lower body cast for 6 weeks, along time for a 2 year old! Then the lengthening comes, they are pretty bad, she will have this thing called a fixatetor on her leg for 8 months at a time which 4 of these months we have to stay in West Palm Beach. A fixatetor is a thing that has all these pins going into her leg and everyday you have to adjusted them so that the bone in her leg will stretch. Very painful for her, lots of physical therapy, and it seems almost like she can’t move for 8 months. As you can tell I am not thrilled about this but in my mind this is the only way, and although this is going to be so hard on her and all of us, it has to be done! I just have to thank the Lord that Kaylee is being seen by the best, we are so thankful that this is event an options for her and I always say I am so thankful that we are just trying to save her leg and not her life! Thank you Lord for all of our blessings!

Our New Life

A few days later and they released us from the hospital. I decided to breastfeed Kaylee, that was such a good way for me to bond with her, it really helped us both to connect. We finally made it home, when I went into the hospital it was cold and everything was dead, but when we made it home spring was springing. Everything was so beautiful and beaming with life, the grass was green, the trees had leaves, the flowers were blooming, and the air was fresh. What a nice way to come home!

I know people are not going to like what I am about to say but this is something I have to get out so you all can know my true feelings. I am not going to lie I was so overwhelmed! For the past two weeks I was being pampered in the hospital, no responsibility but myself. Then all of the sudden bam it hit me like a ton of bricks, not only did I have my 18 month old son to take care of I had a newborn who needed me every minute. Something I was not thinking of while I was pregnant. In the beginning I did have a lot of help thanks to my mom and Chad’s mom. But my son had been away from me for so long that when I made it home he didn’t want anything to do with me, he didn’t want to be at our house at all. That on top of everything else that really made my post-partum worse. I just couldn’t shake this feeling I had, I thought to myself women all over the world was taking care of two or more children why couldn’t I do it. I know this sounds crazy but the only way I made it though all of this was watching 19 kids and counting, that mother was such an inspiration to me.  I would just cry all the time, I didn’t want anyone to come around I almost felt like I just wanted to hide. At the time I just felt like no would see Kaylee like I did, all they would see was her leg and not the precious baby she was. I know that sounds terrible these were my feelings. Deep down I knew that was not true but that was just my hormones getting the best of me .

After a few weeks things got a lot better we all got into a routine, the breastfeeding was going good and my post-partum finally subsided. After that I wanted to show my new baby off, I wanted everyone to see her! She was beautiful! Kenny started to get use to her to. Things were going great and my life was finally perfect again! I had two beautiful, healthy children! Going though this experience has really made me appreciate all the good Lord as blessed me with. I have a new found respect for family’s and children w/ similar situations and my heart and prayers go out to all of the children in this world with much worse situations. I am very lucky because first hand I know it could have been so much worse. Please Lord take care of the children in this world that need you the most!

My life had never been Brighter

Ok so back to the doctor scare. They admitted me into the hospital, my doctor wanted to keep me pregnant as long as possible so they kept me there. They hooked me up to an IV with fluids to keep me hydrated. I stayed there for almost 2 weeks, then finally the doctor came in and said lets get that baby out! I was scheduled a few days later for a c-section, oh I could not sleep those few days I was so excited. Finally the day had come Friday April 2^nd, 2010! There was so much going on in my mind that day, I would think what if there is a lot wrong with my baby, what if she does have down syndrome, what if she is missing her foot, what if there is hardly a leg there, but what if these doctors are just crazy and my baby is perfect. They never gave me a clear answer to what it is, they could have been wrong the whole time. That was my hopes! It was 1:00 that afternoon ready for surgery. My family came in and said there goodbyes, but when it came to my son saying good bye I just broke out in tears. No more just Kenny being my baby there would be a new baby here. How in the world would he handle all of this, will he understand what’s going on and why I can’t hold him all the time like I use to. Everyone walked out and I got ready to walk back to the surgery room. I was shaking, I just wanted to turn around and run. Was I ready for this? No I needed a little more time to think. There was no turning back now it was time! I was shaking so bad they couldn’t even put the spinal tap in my back the nurses had to hold me down. They got it in finally, laid me down and put the sheet up so all I could see was blue. I don’t really know what I was think here maybe it was all the pain killers. I just know I wasn’t event thinking about her leg all I want to do was see my little girl. They brought my husband in and then I started felling them do the surgery. A few tugs later I heard it’s a girl. Then next the cry, other then my son the sweetest most precious thing ever. I couldn’t hold back again I cried with tears joy! All my husband could say was she is perfect, she is beautiful! I remember asking him does she have hair, that’s all I cared about. I got one quick look at her then they rushed her off to the nursery, I didn’t even see her leg. About an hour had past they got me back in my room, then they brought her in. My little baby girl all my worries were gone. She was the most beautiful tiny little angel I had ever seen. I knew it these doctors are crazy they just wanted me to worry I guess. She was perfect from what I could see and that’s all that mattered. She was so precious all rapped up in that swaddle blanket. I waited awhile before I looked at her leg I just wanted to enjoy this moment with her, I think I was scared to look. But after a few hours I looked. What was this all I was worried about you could hardly tell a difference! I knew it she was perfect one leg was just a little short but not by much. There was an orthopedic Doctor there at the hospital that day he looked Kaylee over and said I have never seen this nor heard of this, let me go do some research he came back in and said I believe this is something called PFFD. I was so relieved, they had a name for it and that was the only thing wrong with her nothing else. No down syndrome no missing foot and she had enough leg to work with.  It was FIXABLE!!!                                                                                         

 

The Dark Side

Ok I am sure you are sick of hearing how perfect my life is, I sure am. It was a few weeks before Christmas of ‘09 and my 20 week ultrasound was here. I dropped Kenny off w/ my mom, I wanted to go by myself because I had some much needed Christmas shopping to do after my doctors appointment. I got to the Doctors office they called me back to the ultrasound room, I remember doing this w/ my first no worries at all they was just going to see if everything was in it’s right place. I seen her on my 16 week gender scan and she looked perfect so I didn’t think much of it. The ultrasound girl was doing her thing we was talking about Christmas coming up and how we weren’t

prepared for it. I was just think about all I had to buy for and what I was going to get them. We talked for awhile then she got really quiet but I didn’t think much of it. Soon she said go back to the waiting area the Doctor will be with you soon. So I waited for a little while then they finally called me back. I got in the room and waited little bit longer then finally she came in. I will never forget her face she looked kind of scared. She said I was looking at the ultrasound and there seems to be a problem. I was thinking.. Ok what in the world does that mean! She said I am just going to tell you I have only heard of this in down syndrome babies. My thoughts “What did you say? I don’t understand those words!” She went on to say this is nothing I have ever seen and I have no idea what to tell you, I know she seen the tears whelming up in my eyes, she said I will give you a minute to think about this and she walked out of the room. Those few minutes felt like a lifetime! I sat there all by myself in that room and my life was crumbling down all around me. Tears running down my face I just couldn’t hold it back I cried like a baby. A million thoughts running though my head but all I can remember is think this isn’t happening the ultrasound is wrong! Just talking about it, I am getting that feeling again you know that feeling were your heart feels like it’s coming up your throat. I was just sitting there shaking in shock. The Doctor walked back in and said I am sending you to a specialist (200 miles away). I said ok that’s all I could get out. She told me take my time in here and leave when I was ready, so I sat there a little longer and tried to pull myself together. I didn’t want anyone to see me crying when I walked out. I got in my car and it’s funny to think now I was so dramatic! I was just looking at the sky saying WHY, why my little girl, why can’t it be me and not her, what did I do wrong I have done everything I was suppose to do and I have been a good person all my life, why Lord are you punishing me. Little did I know this was no punishment but a honor from God for choosing me out of everyone in this world to be her mother and take care of her. A few days pasted probably the worse few days of my life! Then the appointment with the specialist came. Chad’s mom Rhonda watched Kenny, and me, Chad, my mom, and dad went together. All that way up there and they said this is something we have never seen or heard of all we can do is do the amniocentesis test on you, but there is a chance you can lose the baby. Um no I don’t want that I will hold off, thank you. There was nothing else they could tell me we left and all I could think was how am I going to fix this. I hate milk and any dairy products maybe that was the problem, maybe if I forced my self to drink and eat dairy products her leg will grow. I remember on the way back home we stopped at Dairy Queen and I forced myself to eat some ice-cream , I just wanted to throw up w/ every bite but I finished it. Lots of calcium for me now! All I could do was pray, please Lord just let it be her leg and nothing else, a leg I could handle but anything else I wasn’t prepared for. I thought the odds of it just being her leg were slim, there was just never one thing wrong. We all researched it a lot and found a lot on kids with something called PFFD, but no one was for sure what it was so we really didn’t have any answers. Well the months pasted pretty quickly I just remember I didn't want to talk to anyone or see anyone, I didn't want anyone to ask me questions about it. Before I knew it I was going to my 36 week check-up. The doctor came in with some more bad news. She said my amniotic fluid seems to be leaking we might have to take the baby early. She said I want to keep you pregnant for as long as possible so go home drink lots of fluids and stay on bed rest for the rest of your pregnancy. But with a 17 month old boy to take care of the was impossible. The next day I took it pretty easy but I noticed Kaylee hasn’t moved at all today. I was scared what if something happened, what if my child had been taken away from me. That was far more worse then anything wrong with her leg. I called the doctor’s office they said get here fast. We flew up there they checked me right away, my fluid was extremely low, the Doctor said I am admitting you to the hospital. I was scared to death, but all I could think about was my little boy that was the last day I got to spend with him by ourselves. Both of our lives were about to change forever!

From the beginning

I got married to my wonderful husband when I 20 years old, I knew he was the one and only for me. He was the strong one, the one who always kept me straight and put me on the right path. I knew when we dated he would be something in life he was so driven, I knew then he would take care of me and our children. We had the most beautiful wedding thanks to the best mom in the world my mom! After we had gotten married we decided to build our dream home. Then soon after we moved in I was getting baby fever, it took a few months for me to get pregnant but it happened. We were so excited finally a family to fill these rooms up. We soon found out it was a boy the best news ever. My pregnancy went very good I was one of those women who was scared all the time I ate like I was suppose to I would drink only water or sprite and I would only take a Tylenol only if I had to which was hardly never. The day finally came it was time to have our baby boy. The happiest day of my life! After being in labor all day my doctor came in and said we need to do a c-section, defiantly not in my plans but what ever I needed to do to get him here safely.  Oh just hearing his first cry brings tears to my eyes, I still remember it like it was yesterday. The first time I looked at him he was the most perfect gorgeous baby boy in the world! I will never forget that feeling of joy, I had a new little man in my life Kenny Dell Barton. From that moment on my life had changed I was a mother now, he was all my responsibility. He was everything and more that I hoped he would be, he had lots of dark hair and big blue eyes and he was perfect in everyway possible. After the shock and be completely overwhelmed by taking care of a baby passed, I actually could not believe my life had turned out so perfect. When my little boy started getting a little independence to him I told my husband I am ready for another one and this one will be a girl! Kenny needed him a playmate, so when he turned 9 months old we found out we were pregnant again. I did the same thing I did w/ my first one I followed every rule possible "what not to do when you are pregnant". Everything was going great w/ this pregnancy as well. The 16 week gender test was coming up and man I was so anxious, I just knew this one was a girl. My mom went w/ me that day and right when we went in there the ultrasound tech put the thing on my stomach and in a few minutes said it's a girl! I was so excited. When we got back in the car I will never forget telling my mom, man I get everything I want, the Lord must be listening to me, I sure have a good life!  But soon all that was about to change my 20 week ultrasound was just around the corner. 

Before it all

First of all my name is Ashley, right now I am 25 years old and have a wonderful husband and two beautiful, health children.  From me saying that you would think things in my life are about as perfect as one could hope.  I will start my story by saying I have always been one to get everything I want, need least to say I have been spoiled all my life, thanks to my parents, my husband, and the lord for giving me the life I have lived.  I have had plans for my life ever since I was a little girl.  Ok here were my plans, I wanted to get married to prince charming, live in a beautiful castle, and have two children, I wanted a boy first then a girl, I guess because I always wanted an older bother.  But oh as I got older I soon found out everything does not go as planned and sometimes you are put to the test.  Well here we go my test in life.

Introduction

I am writing a blog for my little girl.  Kaylee Diann Barton was born with a rare condition called Proximal Femoral Focal Deficiency in other words PFFD.  This is a condition that has effected Kaylee's right femur bone, hip and knee.  I feel very compelled to write this blog to give everyone around me a better understanding of this condition, and our feelings as we all embark on this journey of Kaylee conquering PFFD and someday walking with both feet on the ground!