"First Grade Here I Come!"

Hello Everyone!!

Sorry it has been so long since I last wrote - We have had a fun filled summer full of Camp activities and Swimming plus lots of visits with family :) As Taylor's mother, I am gearing up for school to start, we have her uniforms purchased, we are working on school supplies and this momma is anxious and excited for First Grade!

Taylor is getting excited as well, she wants to know who her teacher is - what friends are going to be in her class, and most of all she wants to know what the cafeteria is serving for lunch. I am still in awe that we made it to First Grade, we went from a 3 pound baby who was 9 weeks early to a 6 year old who is going into the First Grade. I wish we could slow down time!

We are currently working on reading and math with Ms. Taylor - she loves to learn and is a joy to teach! Thankfully this summer was successful in the potty training department and we pray that it continues as she starts school again.

I am currently planning how she is going to do homework this year, last year we saved the packet for the weekend and it worked for us. This year, I would like her to get in the habit of completing some each night.

So here we go!!! First grade watch out here comes Taylor!!!

Reading... First Grade...Celebrations

So this is going to be a sorta rather long post - but here goes nothing!

Taylor rocked Kindergarten - When I say rocked, I mean it... She went from not being able to read or really write and now is writing sentences and reading everything and anything she can get her hands on!

She turned 6!!! I realized really quickly that 6 was going to be an even bigger year than the years before, She will go on to First Grade this year, she learned how to ride a bike, She found out she really enjoys reading books about animals ( DUH!).

We have been celebrating this month and really all of last month. We celebrated starting her 6th year of life, we will be celebrating her promotion to First Grade and soon we will be celebrating Summer!

Taylor never ceases to amaze us. She is an incredible little girl. She is super kind and caring, just this past Monday she told me she is excited to have a foster sister or a foster brother. She wants to show them how much her mommy and daddy can love them. Made my heart melt.

Taylor had a eye appointment this morning, her vision is not getting any better but her eyes are now the same - which is somehow good. Her headaches are unrelated to her vision... which calls for a trip back to the neurologist if they continue.

So with that said!!! We will be welcoming you all to First Grade Taylor edition... just around the corner!!!

As always thanks for the prayers and the thoughts !!

Love from Taylor's Corner!

Janine :)

Long overdue update - :) Welcome To kindergarten!!!

Man, I have been slacking on this whole blogging thing lately!

Well welcome to Kindergarten - Taylor edition... It is full of adventure and emotions!

Lets start to her very first month of kindergarten - October to November... Man in this month I cant even begin to express the amount of emotions - I cried, she cried... I got stressed, she laughed. I laughed, she got frustrated. Yup this was a never ending cycle of emotions that happened in that first month.  But once we got the hang of this new schedule and Taylor started making friends, we discovered really quickly we have a talking child on our hands... lol

Last month we applied for DDD - which is a abbreviation for the department of developmental disabilities - we knew that Tay needed just a little extra help above what she was getting in school and her pediatrician really pushed DDD after seeing Taylor twice. So we applied, our case worker came out approximately 3 weeks ago - She told us before leaving that she would be surprised if Taylor was approved because she had the wrong diagnosis. So this began a huge process of scheduling further evaluations and appointments with more specialists... This afternoon, I got an email that has changed everything - by the grace of God Taylor was approved. The next step is getting Arizona Long Term Care insurance set up so we can have all the resources we need at our finger tips.


With all this said -We are blessed beyond words that Taylor is who she is today - a lot of people and hard work later our little 3 pound preemie is in her words an "owl rockstar" We have seen a slight speech regression  and the school is all over it like the FBI. Lol


Taylor can also skip now - Its not perfect, but she can do it!!! I will post a video as soon as I am able to capture it :)

As always thank you for continually supporting Taylor and our family!!

Love Always -

Janine (*mommy to Taylor)

A long overdue update

First of all I apologize for not updating this in quite some time, I guess I got wrapped up in every day life and forgot to blog.

To catch you all up to date we have a diagnosis... Rett Syndrome ( google it if you want, though I don't recommend it...)  Our world has literally turned upside down, well maybe thats a bit dramatic... But I have felt alone - Isolated... I needed time to process this diagnosis... I needed time to heal from the shock of it. What I want everyone to know and what we all want you all to know, is Taylor is still Taylor. She is still our sweet, bubbly, sometimes grumpy, energetic, elephant loving Taylor... I can go on, but y'all get the picture... Soon we will start ABA ( applied behavioral analysis) long name for basically helping us help Taylor control all of her behaviors good and bad.

To say I have been overwhelmed is an understatement, I have felt anger, sadness, guilt and acceptance, I have gone through them all several times now. I am angry that no doctor thought to test before now, I am sad that one day who knows when hopefully fifty million years from now, Taylor will slowly slip farther and farther away, I have guilt that I should of known, I should of fought harder... you name it I have felt it. But it all comes back to acceptance. I have to accept that this is what it is. We will continue to fight, therapies for as long as we can and then some... but we will fight.


So with that I leave you with this - take each second to tell your children you love them, to spend as much time with them as you can, to always forgive yourself... and take it all one step at a time!

Tolerance and Acceptance

*** THIS POST IS HEATED***

When I found out I was pregnant with Taylor - my life changed. I instantly had dreams, dreams of her being in every preschool/toddler class I could find for her - Music class, Open Gym, play dates, Mommy and Me tumbling... you name it I thought of it. When she was born at 31 weeks and I saw my daughter for the first time, these dreams changed to just praying she would live. I was raised with the morals of tolerance and acceptance. My parents allowed me to work with special needs kids and they were proud of me for doing it, they also allowed me to take sign language instead of Spanish, knowing that Spanish in this country would get me further - but learning sign language and about the deaf community I learned so much more than another language. I learned acceptance and tolerance far greater than my parents ever taught me.
     When Taylor was born super early and missed important milestones in her development, I knew that God has blessed me with the gifts of acceptance and tolerance. At the age of 14 months old, Taylor started therapies. I was thrown into a world that I never dreamed of. But one foot in front of the other, I realized that the toddler music class was probably to loud and that tumbling class? Ya too dangerous. That mommy play group? too loud for Taylor.  I threw myself into learning speech therapy skills and how to be a physical therapist and occupational therapist all before I finished my own bachelor's degree. When Taylor started going to day care so I could work, it was not long before I had to pull her out due to behaviors. I saw the stares from the "normal" mothers. It was almost as if they say look at that mother, she doesn't understand the first thing about parenting. Taylor is challenging, she is like a puzzle missing all the right pieces. I have been blessed to meet friends along the way that provide me with encouragement and helpful advice that I do not take as judging. They truly have Taylor's interest at heart and not once have I felt like they have made me feel like a horrible mother.
    When Taylor started Pre-KD last year, I admit I had my fears - what will the mom's think of Taylor. Heck what will the teacher's think of my parenting? What I discovered shocked me. This team behind Taylor didn't see my parenting as a mistake, they saw a mother that had tried everything and didn't give up. Now I may not fight doctors for a diagnosis. I just am not that type of Mother - to those Mother's bless you - I admire your ability to juggle everything and still argue with a doctor. I had and have placed all my energy and time in focusing on making Taylor successful. That is just what it is. Taylor has learned so much by allowing me to focus on this. Meal time? Its not a knock down drag out any more. Potty training? Its going.

     When I see a child crying in the middle of wal mart or the commissary I do not think oh what the hell is that parent doing? I think oh that poor parent, how embarrassing. The fact of the matter is kids will be kids - I have seen typical kids throw fits far greater than Taylor's. The answer to this is not to "beat the child" as I have seen this week in several cases... the answer is to redirect the child - I have found that when we are going to be going to the grocery store or any store - I bring a long the iPad and iPod and allow my children to play games. I also bring snacks - Lots of them. I get it Mom's who child is screaming like a monster in the middle of the aisle while trying to choose cereal... I get it mom whose kid is crying hysterically in the middle of the department store. I get it. I get it. I get it.  I do not think a child that hits will learn anything my hitting him in response to his behavior. They are only going to see well Mommy/Daddy hits when they get upset that is what I am going to do as well. While I think it is important for the parents to teach their children. I do not always believe spanking is the answer. I get it southern people, I get it. You and I both grew up getting spanked. We turned out fine. Heck I spank my own children when they do something bad enough to deserve it. But I do not beat them to the point of no return, which has actually been suggested by a fellow mother to me on several occasions ( we are no longer friends).

Taylor has taught me tolerance and acceptance. I wish that every mom had a kid that taught them these valuable lessons. Sadly these are the parents whose kids will grow up with the same mentality.

Taylor is amazing - she is smart, she may melt down over not being able to find a book or because that particular day it is easier to cry than use her voice to tell me what she needs. The point of this whole post is not just about learning tolerance and acceptance it is about realizing that Taylor is my daughter - your comments and stares can stay to yourself.

Princess Eyes, gibberish, & a new perspective

As many of you know, Taylor had eye muscle surgery a couple weeks ago. I am pleased to say that this eye surgery has surpassed what I ever dreamed it could do... Her vision although she will still need glasses has made leaps and bounds since birth - For the first time tomorrow, I will fill a prescription for glasses, that is lower than the original prescription that she received at the age of 1. We are forever thankful as a family, to Dr. Cogen and his staff at UAB - Callahan Eye Hospital in Birmingham, AL.

With the surgery came the last two weeks of what I would describe as a rollercoaster of events... From overheating to fevers to throwing up all the way to fainting. I thought we had seen it all, till I noticed that Taylor had begun to stutter again... something that we had not seen in a few months. With the stuttering came back what we have dubbed as Taylor's secret language... Some days I can hear Taylor clear as day and understand her - just yesterday she told her Occupational Therapist, that Princesses do not go to space. But as we go further and further away from the surgery ( whether it is related or not) she has definitely regressed back to Taylor's world... I can only pray that with intense work at home and in therapies we bring her back to where she was.

With all of this Nick and myself have gained a new perspective, not only for our family but for our relationship as well. There are times when I have cried about everything going on with Taylor or I meet another Mito mom and see similarities or they see the similarities and point them out before I have a chance to speak...I have spent many nights sitting in bed crying and praying that we find answers soon. Here is to waiting on doctors and continuing to fight for Taylor. <3

A reflection on the last 3 years...

I was met with a challenge from a "online friend" who has been a great source of strength since I gave birth to Taylor, 3 years ago... She challenged me to sit down and type out the frustrations and the triumphs of the last three years... With a simple agreement that when I was done I would see that there are far more triumphs then challenges. So thank you March of Dimes for making me realize that Taylor's story matters and thank you to everyone who has been there the last three years.


So here we go -

Triumph #1 Taylor was released from the NICU just two months after she was born!
Challenge #1 Taylor was in the NICU and had a scary stay, that even though I remember it I am able to focus on the triumph of this!

Triumph #2 Taylor mastered physical therapy and walked before she turned 2!
Challenge #2 Carrying Taylor because she couldn't walk while 6 months pregnant was a challenge!

Triumph #3 Taylor learned how to speak and boy did she take off!
Challenge #3 Taylor hits pits of regression, still where she chooses to not speak to anyone or anything.

Triumph #4 Taylor successfully learned how to go down a slide, without screaming!

No challenge here!

Triumph #5 Taylor started putting phrases together about the age of 35 months and has mastered making three word sentences and sometimes she likes to surprise us and say more at once :) Like, " daddy I wet my bed, so you have to put my sheets in the washing machine" :)

No challenge!

Triumph #6 Taylor turned three!!!!!!!! The neonatologist in the NICU was a mean mean man, he informed us when Taylor was only 48 hours old that if she lived to see outside the NICU that she would most likely not make it to her third birthday! Well, guess what? We made it and we are making it past her 4th birthday!


Triumph #7 Taylor started school, a day I thought we would never see - I still get teary eyed when I say, its a school night. She truly has amazed us and taken off - completely potty trained at school and listens well.


I think with every kids life there are challenges, but with our life and with Taylor it is easy to get overwhelmed in the day to day therapies and challenges, but to see the positives in our life helps a ton!

So I leave you with this video It truly says everything that I want to say!

http://www.youtube.com/watch?v=COuQ8y2Adns


Also please be patient with me for the next couple of weeks - I am focusing on my family - Family is the greatest thing you ever get given. So embrace it and love them! <3

Set backs, Bifocals,& ABA

A lot has been happening in Taylor's corner - So much so that this mommy has been taken over once again by therapies.

Lets start with Set Back's - Taylor out of no where started stuttering extremely bad. About every two phrases she starts by stuttering. This means all of her goals and work in speech has to take a back seat as we focus on this new problem, as to hope to correct it before she is older. As her mother I should have seen this coming, she was doing so well, her brain was bound to need a catch up period at some point... Its a learning process for us, I am very thankful that we have Nick home for now to help with this set back.

Taylor recently got her new glasses - Bifocals :) She is adorable with them on! She is doing amazing with them, her next appointment is in January and we will see if they are actually working or not.


ABA - we recently took on another two therapies one is social group which is a half hour of social interaction facilitated by Taylor's speech therapist. She is doing amazing and has really made a good friend in the little boy that she plays with! I have also made a new friend who knows just how crazy this life is. Taylor also started with this same little boy peer ABA therapy - ( autism behavioral analysis) she is having a blast playing with her friend and does not even realize that she is in therapy!

This is it for now - Thank you all for being patient as I update the blog :)

Bedtime routine.

So lately, Taylor has been insisting that only her daddy can put her to bed - which is fine and all, but Nick is on swings which means he gets home long after she has hopefully been asleep.

Well this does not fly with Tay, instead we have screaming matches and arguments and door slamming... I swear its like living with a teenager. But nonetheless  I find myself sitting outside her door bawling like a baby - because no one believes me... She does not do it when Nick is home, she does not do it for anyone else - BUT me... What the heck did I do to deserve this?! Geez...

Praying we end this little game soon... Really miss my sweet cuddly Tay.

Catch up ...

So this will be a massive catch up and then I will try and be better about updating as much as possible!

Lets see -

Taylor is still in speech and OT - We go twice a week for a total of 4 hours...

Speech - I AM PROUD TO SAY - Taylor is caught up :) We will still attend speech, because Taylor still needs help coming out of her shell and expressing herself. A HUGE thank you to Mary Beth who has stood by Taylor and helped her overcome a lot in such a short amount of time. :)

OT - Taylor is doing great with fine motor activities, still working on her attention and getting her to focus for longer periods of time. :)

Taylor has been challenging this last week - She has had some of her extreme behaviors and I can only wonder if all of this is the "calm" before the storm. None the less, even though I joke about sending her away to boarding school... we love her and I am thankful she keeps our lives full of surprise :)

There ya go Mass overload but I will try and get on here and write a post regarding some issues we are having tomorrow :)

have a great night!

Challenge Accepted.

I was challenged to sit down and write out all of my feelings and frustrations of being a mother of an Autistic Child. Challenge Accepted ( 2 months later)

When we were given the "unofficial" ( I use that because only a Dev. Pediatrician can give us an official diagnosis) diagnosis of Taylor's Autism Spectrum Disorder, I cringed. I was already crying but the extreme anger I felt made me cringe - in fact I am not a violent person, but I wanted to slam things and punch the wall. It was kind of the "damn it" moment if I may. To this day, I have not come to terms with it and I still hold out hope that the Dev. Pediatrician will tell us otherwise when we see him in July. 

I get it, I hear ya, "Janine, just accept it and move on" - Point is I can not, not yet - if ever. Taylor was born at 31 weeks due to pre-eclampysia. I have not yet gotten over this and when I do I will be shouting it from the rooftops. Taylor being my first daughter and myself being only 20 realized real quick when they rushed her out of the OR that this was not going to be an easy ride, Seeing my daughter in a box caused extreme hatred <---- there I SAID it, HATRED. 

Unless you have ever had a baby in a box, do not even begin to try and analyze that Hatred. I hate all of the evaluations, I hate hearing how far behind she is, I hate when no one can tell me when this "nightmare" will be over, I hate that she will randomly refuse to speak, eat, or drink, I hate that she has extreme meltdowns and tries to hurt herself and me, and I hate that everyone keeps telling me not to worry about her. 

I also envy every "normal" kids parents - and I am one of them. I hate that there is no normal... You see this hatred started 3 years ago. When I had Taylor and all the other mom's got to enjoy having their children in the room with them, I had to take a trip down hallways and through doors just to get to my baby, I had to come home without my daughter, I had to stare into an empty bassinet for 6 weeks waiting for the Dr. to release her. 

I hate that my father was not there to hold his daughter and for me to take a picture for her baby book, I hate that if he would not have died 2 weeks prior there would have been a chance I could have carried her a little bit longer, I hate that I had to put Mum through pain again I just am full of hate. 

One thing is for certain, I love Taylor Ann with all of the love a "normal" if not more Mommy does. I know the meaning of sacrifice better than most, I understand that to better the lives of my children that means sacrifice. 

So Autism? It sucks, I hate it and I wish that I did not have to face the giants of the Autism world, and the stares and rude remarks from people in the grocery store? Ya, you... I was you once, I rolled my eyes when I heard a kid screaming - Now I apologize and feel sorry that you can not understand that children will be children.... I will try hard to calm my child, but know that once Taylor enter's into a meltdown there is little to nothing I can do - So if you make a rude remark, be prepared to be embarrassed after. 

There - ya - go.

Hug your children tight and always tuck them in tight at night!

Update

Yesterday as most of you know we went to Taylor's three year well check - Let me give you a run down on the leading up to this appointment...

When Taylor was born I was not sure she was going to live to see the world nor did I think she would live much past 24 hours, in fact something that I do not share with many people is that I was scared my daughter would die before I could hold her for the first time. But little did we know that Taylor would surprise everyone and just 6 short weeks after she was born she would be coming home...

Her one year appointment was brought with a few tears, mainly because I was sad that her "baby" years went by so fast - but also because as we sat in the waiting room another one year old little boy was walking and talking up a storm, Taylor was sitting on the floor, completely silent. When we got back into the room to have her check up, the Dr asked me if I had heard of early intervention services, I replied a very firm no and told him I was not interested and finished the appointment and never looked back.

At 18 months, when Taylor was still not walking or talking I started to get concerned, I would like to stop and thank Tasha, without her emotional support I would not have picked up the phone and requested services for Taylor. Now, A lot of you Mom's with Kids who have little to no problems, you have made it clear you would have taken the Dr. up on his offer at 12 months, I did not want to - I do not know why I did not want to I just did not, so stop judging me.

The point is at her 18 month check up they screened her for Autism, she scored positive but not enough to raise enough concern and at that time I was just focused on getting through Nick being in Korea. When Taylor was diagnosed with Seizures just a short 2 months later, I knew that something was different and that the road that we were on was full of challenges.

Now, lets get up to speed to the last couple of months, Taylor has had extreme behaviors - I mean extreme - and any mom that say's to me well my kid does that too - Seriously go have them evaluated. Banging her head into the wall, kicking, screaming, throwing things, breaking things, you name it I have had it happen in the last couple of months.

You can all sit back and say kids do things at their own pace, but when a Dr. tells you your daughter is functioning at 18 months and SHE is THREE... Ya you start to wonder.

So, yesterday we brought her in - I should have known it was going to be rough from the moment the receptionist handed me the communication paper to fill out and I had to answer No, to several of the questions. I also should have known that when Taylor threw a fit because she did not want to stand on the scale that something bigger and out of my control was about to happen - I mean her whole life before something "bad" happens we have had "signs" if you will that lead up to it.

When we got into the room, FINALLY - Tay seemed okay, I mean what kid does not like it when someone hands them stickers and lets them go to town? The minute the thermometer was brought out that was all she wrote, and honestly between Addyson saying over and over " want to get down" and Taylor freaking out - I am surprised the Dr. did not run out of the room - surprisingly he just smiled and said here let me take Tay here let Addyson down and lets talk calmly ...

I thought I was good - I thought I had my emotions in check, but when he asked how we were doing I lost it - then spilled out Taylor's behavior's and my fear that her therapists were right, she needed an evaluation for Autism and she needed it NOW. A few clicks on the computer and a piece of paper later *that I filled out* We had it - not an extensive evaluation but enough to send her straight to a dev. pediatrician. She scored positive and worse than when she was 18 months. She scored critical in 4 areas - FOUR.

Nothing could have prepared him for agreeing with my fears. NOTHING.

Yesterday I was crushed, I was absolutely crushed but with the help of friends who have special needs children they picked me up - and still are. For that I am thankful. I am also thankful for my friends with normal kids that they have not taken off yet - that they still allow their children to play with Taylor. I need that sense of Normal right now - So if I seem a little off for the next couple of weeks, and I snap at you or lose it or choose not to talk to you about everything it is because I need to process it with my family and few very few select friends.

I hate the word Sorry - I know it is a natural response to anything - I hate it. You can say it and I will smile and rattle off something a long the lines of its okay nothing you did, nothing anyone did.

Crazy how the last three years have prepared me for this moment, but none could have really prepared me - if that makes sense.

So hug your babies close - I know for now that is all I can do - is be thankful she is Alive and Healthy. She is living with Autism and not suffering from it :)

She is only 3.

So this morning while browsing Facebook I came across this picture about a three year old... and I realized, I do not let Taylor really just be a kid... I am so focused on her meeting goals, meeting milestones, that I forget some times the best learning is that of just playing... We are in no where as strict as some parents,  I mean my children jump on the couch, ground, beds - really just about anything they can... Not once have I gotten on to them for it... in fact the way Taylor learned how to jump 2 years late is all thanks to the couch. :)

I challenge everyone to just let their children be children - they can not sit still for as long as we can, sometimes eating spaghetti with their fingers is the best way - Now I am not saying do not have rules, but before you set them make sure you remember, they are only children once!

Have a great day with your munchkins - remember only a child once. ;)

44:52

Yesterday as most of you know, I ran my first 5k ever, for Taylor. It benefited Autism research and I knew that if Tay could go for the last three years that surely I could run 3miles...

I went in with the goal of 45 mins - I finished as noted in the title at 44:52 - I was good until we got to the halfway point when I realized that my daughter struggles more in one day then I was in 45 mins... I ran my heart out for her - I cried tears of sadness, guilt, and anger as I pounded off miles... I was surprised with myself as to what I accomplished.

Taylor, you have such an amazing support system behind you and mommy did not even realize it until yesterday!

Thank you Team Taylor for suffering with me!! :)

You all rock!
<3

Three years has gone so fast.

As I type this I am brought to tears. Three years ago I got to hold Taylor for the very first time. Yes, you read that right - 7 days after she was born I finally got to hold my baby girl. A lot has happened in three years, that I all to often forget about because I am so focused on the bad.

Taylor learned to walk.

Taylor said her first word - Uh Oh

Taylor made her first friend

Taylor learned how to climb and Jump

Taylor went down a slide without screaming

So much more has happened... She turned into a big sister and filled the role amazing. She helped mommy through the last 8 months of Nick's tour in Korea.

She knows just when mommy needs a hug, a smile, or even just a kiss.

On that note - it was almost a year ago that we were told of her diagnosis of Autism spectrum disorder, I remember sitting in the dr's office - Crying, uncontrollable crying. Taylor was laughing - Yup you saw that right she was laughing... I think it was that moment that I realized so what if the only thing that is wrong with her is Autism... We made it this far and proved people wrong lets do it again...

There is a lot to Autism that people do not understand, please educate yourselves before you make comments... I am an open person as well and will tell you anything you want to know.

Have a great day with your kiddo's I think I am going to go and hold my baby girl for the first time this morning. <3

Dear Taylor.

Dear Taylor,

Three years ago you blessed us with your appearance - a little early but you showed us what unconditional love was and that despite all the challenges to never give up. I will never forget the first time that I got to hold you - you snuggled and even let out a small cry - and being able to comfort you was the greatest feeling in the whole entire world. Each and every milestone and goal that you accomplish makes Daddy and I very proud. You have turned into an amazing big sister and an even more amazing daughter. You have taught both of us patience and perseverance. You have never given up on any challenge that has been thrown your way instead you worked harder than ever to achieve it and master it.

We can not express enough how grateful we are for you and all that you have given to us. You made us a family, you allowed me to see through your eyes when you were diagnosed with Autism and again when you needed glasses. We we will always be by your side no matter what. Now tomorrow, as we prove those doctors all wrong and you wake us up at 6 am, I may cry some tears and its okay Mommy is not sad she is grateful that our miracle baby is alive and well.

Taylor, Keep defying the odds, keep smiling and Please please remember that we love you more than you will ever know.

Love,

Mommy, Daddy, and Addyson.

I thought I would share this -

I am the mother to two beautiful preemie girls - One ( Taylor ) was born at 31 weeks and Addyson was born at 35 weeks.

"But Lord, I don't think she even believes in you."

God smiles. "No matter, I can fix that. This one is perfect.She has just the right amount of selfishness.

"The angel gasps, "Selfishness?! Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect.

She doesn't know it yet, but she is to be envied.

She will never take for granted a spoken word.

She will never consider a step ordinary.

When her child says 'mama' for the first time, she will be witness to a miracle and know it.

I will permit her to see clearly the things I see ignorance, cruelty, prejudice and allow her to rise above them.

She will never be alone.

Often I feel alone in this journey with Taylor and I question why?! But I am envied because of Taylor's challenges people envy the strength it takes for us to overcome challenges.

Just thought I would share what an amazing God we all have!

Sight Seeing.

As most of you know - Taylor is in need of a eye surgery that can potentially save her eye sight. She was born with a condition known as ROP - and the immense amount of oxygen that was given to her in the NICU only made it worse. We have been fighting harder than I have ever had to, to get Taylor this surgery. Our Insurance is refusing at this time to pay for the surgery so I have been really busy writing letters and mailing them out to see if one of the pro - bono surgeons can do the surgery... So for now we fight and wait.

xoxoxox

Taking Off.

Taylor continues to surprise me on a daily basis. Just last week she decided she needed to go potty like a big girl and is conquering the goal of potty training so well that even as a mom I have a doubt it will actually work.

In OT - taylor finally went down the slide on HER own... WHOA. Hold on a sec, My child the one who is terrified of the slide - went down?! Im sure Ms. Katie thinks that I am crazy when I look at her shocked. My child is cutting with scissors, building towers and climbing and jumping.... dont slow down Taylor!! Keep growing!!!

In speech - she is now telling stories. Speaking more than just two words at a time, and I can not be more proud of her!!! GO TAYLOR!

So off we go to speech this am just wanted to share some happy news with you all this am.

OT Eval....

So yesterday I was very anxious as taylor's OT therapist handed me the copy of her report from her eval she had done on friday - As I was reading through it though nothing could have prepared me for the scores... In object manipulation my daughter scored 8 months.... 8 MONTHS... I had to hold back tears since I was in the room with Taylor - I think all to often I look at Taylor and I see soooo much potential to hear and see the 8 months in BLACK ink - was very hard and it didnt sit well with me at all yesterday and still doesnt - but at this point all we can do is fight - harder than I have ever had to before and I will because Taylor deserves better than the best ....

That was just her lowest score - she is still behind in all of the areas from 33 months all the way down to 8 months and she is 34 months right now - Ill take it.

Im sure this is rambling but I needed to get it out and share so Yall can be praying we get through this one as well!