"The child must know that he is a miracle, that since the beginning of the world there hasn’t been, and until the end of the world there will not be another child like him.” Pablo Casals
Recently some things transpired in my "world" and the R word was thrown around as a verbal assault. I was VERY offended. Thankfully it was not directed to or at my child or there would have been a full on assault.
Somehow the "special needs" world isn't so big, and a post was put up just after Christmas from a mom posted a blog titled "Being Retarded" and found the blog very very accurate and very good.
Here is the post. *I am not including the picture of the girl but you can go to the link if you feel inclined and read the post directly to see the photo of a VERY cute girl!*
All around me, people use the word retarded without a second thought. Sometimes, I’ll say “Um, dude, really?” and they’ll say “Oops, my bad! But really! I was being so retarded!”
Sometimes, I let it slide. I realize that it’s a word that’s ingrained in our society’s vocabulary and people use it without a second thought to its meaning.
But what does it mean to be retarded? Well, I know what it doesn’t mean.
It doesn’t mean not being able to choose something for lunch despite 100 choices in front of you.
It doesn’t mean not being able to find your car keys.
It doesn’t mean saying the wrong thing to a person.
It doesn’t mean forgetting your best friend’s birthday.
It’s not something to describe yourself as when you’ve spilled your coffee, or tripped on a crack in the sidewalk.
It’s not something to describe your computer, car or phone.
: slow or limited in intellectual or emotional development or academic progress
For me, it’s not just any old word – it’s my daughter. My beautiful, bright, happy, loving, amazing daughter who is slow or limited in intellectual development and academic progress.
In our household, being retarded means something different.
It means not being able to fully care for yourself.
It means not understanding what the doctor is going to do to you.
It means not being able to explain what hurts when something hurts.
It means not being able to ride a two wheeler. Or read. Or ever be able to live on your own.
But ever the optimist, I also know that retarded means…
…never realizing the negativity behind the word retarded.
…never knowing the insensitivity surrounded the word’s usage.
…never realizing the ignorance of people.
…never knowing how other people view you.
Being retarded also means…
…loving unconditionally.
…finding joy in the smallest of things.
…being self-confident.
…not realizing that there are limitations.
…innocence.
This is Maura. Her diagnosis? Cognitively disabled. Which means retarded. When you call yourself retarded, you’re also calling my child stupid. Because you use the word as just that – another form of stupid.
Let’s get something straight here.
My daughter may have cognitive issues. She may have delays. She may never live on her own. Scratch that. She will never live on her own.
But Maura is not stupid.
In her own way, Maura is very smart. Maybe smarter than us at times. She has more self-confidence than anyone I know who’s called themselves “retarded”. She is the best judge of a person’s character than anyone else I’ve ever known.
Yes, she is slow to learn things. But she is not stupid.
I know that most people don’t use the word “retarded” maliciously. Most people I know use it in a self-depreciating way. And when I point it out, they go “Oh wow! I’m sorry!” and they truly feel like a heel. But the thing is, you’re still using it in the way that people who do use it maliciously use it as – to describe stupidity.
So why not just use the word “stupid” instead? Because I know what “retarded” is. I live with it in the form of my daughter. And in our world “retarded” doesn’t equate to “stupid”.
* Please visit the blog!! *
Tyler has a diagnosis that makes him delayed in many ways. He is not 100 % of his peers. He goes to a class that is for delayed children. He attends with autistic children, down syndrome, and many other diagnosis. He is BY FAR the most handicapped person in his class. Meaning he is affected on EVERY level. There is not one of the five senses of Tyler that is not limited or "retarded."
But what Tyler posses are all of those things the mom says. He is innocent. He will NEVER know hate. He will never know that the words that verbally assaulted me to the core, are words that are of hate. He will never understand that. He just doesn't. He will never realize that he shouldn't love unconditionally.
He is smart. He is very smart. He knows so many things and he gets things. He is a very special kid with a heart of gold and the spirit of a Giant.
The last few months I have realized that this is the last time of our lives that it will be just him. No other siblings. Just him. It makes it bitter sweet really.
The cute stuff he does makes my love grows deeper and deeper and makes me realize everything that he does is even more amazing because he is such a Miracle.
The last few weeks we have realized just how much he soaks in. He is so SMART. He is very attentive and very willing to learn. Over a year ago, when he didn't talk, we started making him say prayers at night. We would pray with him around us before that but this was his time.
As his words and vocabulary exploded his prayers are all his. He says what he wants and he does what he wants in them. So sometimes mom and dad don't get blessed but what he feels gets said.
Today he was playing with Grayson's blanket he was taking his "give the mouse a cookie book" and covering it up with the blanket and telling the Mouse book to go night night. Then it escalated and he asked me to help him upstairs.
We went upstairs and he took the book to his "bigger bed" and put the book to bed. He sat right next to the book and said "OK now fold your arms" and he proceeded to help the mouse book say a prayer.
It went something like this.
T: Fold your arms mouse
T: Heavenly Father, thank you for the mouse. Thank you for the mommy to read us the mouse book. In the name of Jesus Christ Amen
He covers the book up and gives it a kiss. As he walks out he tells the book. I will be right out here to check on you. ( Dallas tells him that every night) and Ty waited.
He went back in and took the book off the bed and proceeded to do it in ALL of our beds. He is so sweet. His little prayers are always tear jerkers for us.
He is so thoughtful when it comes to saying I am sorry. Or asking if you are OK. He is so thoughtful in wanting to help.
He comes home off the bus telling us all about his day.
I LOVE this kid. I am so thankful that he is mine. He puts a smile on my face, he filled a void I didn't know was there and he has made a space in my heart that I don't want him to leave. It has also made me realize there is a space in my heart for another one! For that I will be thankful for.
So yep! I fall in love. With a blonde haired, blue eyed, dirty faced and gross hands, still not potty trained 5 year old. He is my life. He is my baby. He will always be my best bud.
Ty's therapist has been working with the wheelchair shop to find a great alternative. After talking to her yesterday she sent me a name of a mom who has a stroller like we are looking at. She has never used it. Tomorrow we are going to go see if it works for us. If it does I guess we will have to see how much she is selling it for.
As I was talking to her she said her son was at a developmental level of a 6-9 month old and had global delays. She said he had some brain trauma at birth. I told her that Tyler did too. Come to find out the baby was born at 27 weeks. That is 2 weeks longer to cook than Tyler had.
I got off the phone pretty humbled. Humbled because Tyler is doing SO well. He chats up a storm all day. He talks, walks, smiles, laughs, makes jokes and has a wonderful personality. He has health issues and we have other issues but he is just a kid.
He has plenty of issues. He has plenty of life long challenges but he is still a kid. A kid I am proud of. I kid I love. A kid who makes me so proud of him.
I guess I am lucky. I never thought of myself as lucky. I am lucky that even though all the bad things happened, he is doing amazing. What a lucky mom I am.
September 21, 2005 changed my life. Not only did I become a mom to a beautiful little boy, but I joined a club of moms of premature infants.Tyler was born at 25 weeks and 3 days. He was small for his gestation and was 1 lb 11 oz. He was 94 days early. He is a fighter. Because he didn't get his full 40 weeks he had to fight.
5 years later he is still fighting.
Prematurity changed his life. Because of his early birth he suffered grade 3 and 4 brain bleeds. Those bleeds inflicted such a wound that he has hydrocephalus from it. He has ROP which has left him almost legally blind and he has Cerebral Palsy. The bleeds caused damage and the Cerebral Palsy is a result.
Prematurity has left him strong, stubborn, cute and a MIRACLE.
As a 5 year old, we may not be "caught" up but strides have been made. Tyler started talking in July and has full on sentences. He walks. He LOVES school. He LOVES kids and he is amazing.
He gets anything he asks for and he really wants to have a sister.... soon.
Prematurity is something that effects 1 in 8 babies.
It is the NUMBER ONE KILLER of babies.
The cost of having a premature infant is TEN TIMES more than that of a typical newborn.
ROP is one of the leading causes of blindness in infants. It is ONLY found in Premature infants. Those infants are under 30 weeks gestation.
Know the signs of preterm labor and CALL or go to the Emergency room
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A week or so ago we were at Tyler physiatrist ( aka a Rehab doc.) appointment for a follow up. The follow up was for his phenol shots that he had during the summer to help with his cerebral palsy. During this visit it was suggested that Tyler is a perfect candidate for a baclofen trial and a possible balofen pump. As we were discussing details about the visit they inquired about our insurance and our coverage for Tyler.
( This is not a debate on insurance in ANY way. It was just what happened and I have a whole other post about what happened and why and insurance and all that jazz.)
When it was discovered that Tyler is not covered by anyone other than our private insurance for coverage they said they would not do the baclofen trial and he would not be given the pump. The reason for this is because it would cost to much for us out of pocket and they can't do that to the parents of these kids because the long term care is to costly.
Baclofen is a muscle relaxer. Without it he has continual muscle spasms. He continually burns calories and it hurts. It HURTS! It is like having a charlie horse 24 hours a days. As he grows the spasms will get worse. It will hurt more. It will cause him to lose the ability to walk if we aren't able to give him the medication and at some point he will not be able to function "normally." * Oh and the baclofen is on the 4 dollar script list at Walmart. It is a cheap, easy way to help*
This morning, a local news station showed a small trailer for a man that was arrested for a DUI. Though that isn't uncommon, the man was riding his bike AND he has cerebral palsy. Because of his medication to control his cerebral palsy he was arrested. He was arrested because the medication to make him NORMAL ( oh how I hate the term that was used but gee.. another blog!!) is what caused him to be arrested.
Tonight on Channel 2 news at ten they are going to show the Dash cam for the arrest involved. What makes this even more ironic, this particular officer has the MOST DUI tickets in the state.
The part that makes me frustrated, the only way for this person to be able to use his muscles is by taking the medication and by USING the muscles. Those muscles aren't going to work if he doesn't use them and if he doesn't have medication to help him.
Is it discrimination? How do I help my child grow up as someone that is looked at as beneficial unit of society?
Tyler has some SPECIAL friends in California. 3 of them ( maybe more! One of them has big ears and wears Red!) But he got the most incredible gift for his birthday.
On Saturday we had Tyler's party. He was SO excited. He talked about his birthday LITERALLY all week. He has never talked for any other holiday so we really made sure that he understood. He totally got it.
A little bit before his birthday my former mission companion, Amber, and her twin sister Robin said they wanted to get Tyler a gift. They came to visit Tyler in August. They adore him and he loves them. The only thing I could think of was some Mickey Mouse Ears. Amber said she had the perfect idea and then she texted and said she had overnighted a package for Tyler.
Saturday it arrived in True Amber fashion. Cute and red with Mickey Mouse EVERYWHERE!
Dallas helped Tyler open the package and the whole time he kept saying " Oh my goodness!" It was super cute. I wish I had pressed record. He kept asking Dallas to " open Dad-e" and he waited, SUPER excited. Inside was the cutest Mickey Mouse ears. He was SOOOOO happy!
He kept really still so he didn't make the ears come off. He would dance around and say " Oh my goodness, Oh my goodness!"
He got a SIGNED Mickey Mouse postcard RIGHT from Mickey Mouse himself. Amber and Robin told Mickey Mouse about how much of a Miracle Tyler was and so Tyler became the recipient of a post card.
He got a few other goodies including Mickey Mouse clothes and some Birthday pins that he wore all day. He had such a great time opening the box from them. He was so proud of his new hat and wanted to look in the mirror.
We ended the day with family coming over for a little party. All his cousins that live in Utah were here and we horribly missed Max and Morgan and can't WAIT till we have a birthday with them ( in a YEAR!!) It meant a lot to Dallas and I that people came. Tyler also had Erin and Issac over. Issac is the little brother of the cutest little Angel Girlfriend a little boy could have. We were VERY thankful that Erin and Bryce are a part of our family. Though we don't get together near enough, we LOVED having them there. Issac helped Tyler open his presents when Ty was having a meltdown. ( Oh and Erin, we have read the sticker book a MILLION times.)
His birthday cake was Mickey Beach and they were great cupcakes. He got to pick it out himself and has asked for a birthday cake all weekend. Luckily there were some left over so we could hand it on over.
Today, he had cupcakes at school with Mickey Mouse toothpicks and stickers for his friends. Later we had a play date with Hope Kids and had a wonderful time.
Tomorrow, the CIRCUS. Tyler has talked about it all DAY. He even had a meltdown on the way home from the play date. He wanted to go to the Circus. The tickets include a preshow on the floor with the performers. I hope that it goes well but we are SOOO excited.
On Tuesday we left Dallas to recoup at the house and Tyler and I went to the party store. We have talked about parties, read books about parties and show movies about parties. He is SOO ready to have a party. He said the other day he wanted Hot Dogs at his party. What a difference a year makes. With words it is much more fun to bombard him with questions about his party.
The party store has every kind of party stuff imaginable. Because we had already heard about his dying desire to have a Mickey Mouse party we went in search of all things Mickey Mouse. He saw the Minnie Mouse stuff that looked like his birthday cards that he sent out and he go them and put them in the cart. Then he pretty much went nuts with all the other stuff there. He kept saying " Wow, pretty cool mom!" He would take the candles and pretend to blow them out. It was a HUGE hit and we spent way to much money.
One other item we were in search of was a beach ball and a jump rope. We found a globe that blew up so we got that and we found a jump rope for Tyler. He carries the beach ball map around the house. So I thought I would teach him a few things. He knows where Russia is and China and where Wheel of Fortune is at. ( Las Vegas!)
After trying to find all of the party stuff we stopped and ordered his cake and he is so excited that he got to pick it out. He is LOVING it.
Today when we asked him what his party was going to be like he said " Hot Dogs, Mickey mouse and cake."
He has is Right. Cake and Mickey mouse. Come ready for Limbo, and games!
I have a bit of a anxiety problem when it comes to trying new things. Plus, a lot of time if I plan something with someone, I sometimes flake because I get so NERVOUS. If I have never been to someplace I don't know what things I need to do to adapt it to Tyler. Hence the anxiety.
Last week my mom and her sister Linda had lunch at the Trellis Cafe and me and my sister joined ( AND my dad) I should have gone back and got D and T but the lunch was great with a gorgeous view. So I decided I really wanted to try the Gardens splash pad for Tyler.
So Friday I made a special bag for him and got everything all set. I got him dressed and asked him if he wanted to go on a HUGE adventure ( from the little Einsteins.) He was SOOOOOO excited.
I had thought that maybe we would be able to see the rest of the gardens but I didn't get a chance to clean out the stroller so I planned just the splash pad. When we got there Ty was a little nervous but he quickly warmed up!
The ark is REALLY cute. He was able to play with a bunch of kids and he finally ventured out and would go around and around the ark. He had a great time.
What I LOVED? I loved that he could go in there on his own, play and not need me right by his side. I sat on the ground and watched for a while, took a few pictures and then sat on a rock and read a book in the shade.
After about 2.5 hours Ty decided he was done. By this time it was 1 and so we left to go eat. Ty played at the play place for a while and then we were really done. So we headed home.
Ty did so well. I can't wait to take him again and to try the other stuff. They have a farm, dinosaur museum and caves and gardens. Of course some of them require getting past the splash pad!
I have the MOST amazing child in the entire world. Everything about him is a miracle. He is fun, caring, loving, sweet, smart, adorably cute and a million other things.
I love that he LOVES Mickey Mouse.
I love that he has a favorite Blanket.
( This was NOT today... he NEVER naps unless he is sick.. he was sick a few weeks ago)
I love that he chews on the arms of Leo, Mickey and Barney.
I love that he says "I love you" in his own special way.
I love that he gives awesome kisses.
I love that he will only let me do certain things.
I love that he throws rocks any time he can.
I love that he LOVES his dad.
I love that he is learning to talk.
I love that he always wants to "help" do things that aren't "fun."
I love that he tries SO hard to do so many things.
I love that he gets up when he falls.
I love that he is strong.
I love that he has gone through SO much and yet he is still the sweetest thing in the entire
world.
But what I don't love.
I don't love Cerebral Palsy.
I hate that things are hard for him.
Days like today, when therapy is nothing but a scream fest and and that he tries to throw up to get out of doing what is hard.
I hate that they are hard.
Running, jumping and playing shouldn't ever be something a child can't do.
I hate that he can't ride a bike.
I hate that even Super man can't make an eye exam not be scary or sad or hard.
I hate that even some of his "family" won't take him and love him because he is "different."
I hate that there is something in his daily life that is effected by Cerebral Palsy.
I hate that as a mother I "MIGHT" be missing something that could "fix" something. Or try something. Or afford all the types of therapy that "could" help.
I hate that I still feel guilty about not being able to carry him to term.
I hate that he doesn't know what a bird looks like in his back yard because of his disability.
I hate that I have to sit by Day after day after day and see him have to get up time and time again because his cerebral palsy makes him fall.
I hate to sit by and watch that it is hard for him.
Tomorrow we have a sleep study. After 4 years of him not sleeping well we are going to have someone look at him. After going through the paper work I am not sure how he will sleep with the wires and stuff but we will try. I have a feeling it is going to be a very long night.
Please pray that we can do it and that his sensory problems will be at bay while we get the probes where they need to go and that he will be watched over and protected and that he does his funny leg things in his sleep.
4 years ago today I was sitting in a hospital room wondering what the future held for my new little family. Wondering what dreams were going to come true and wondering if I would ever get to take home my son. This day brings forth so many emotions. Not the anticipation of a happy, chubby, screaming child. But of sadness, fear, and extreme LOVE and faith.
Here is our story. Four years ago I was laying in a hospital bed being told that I was going to have to deliver my son. I was told not to yell, scream, cry, or even throw up.
My only thought......It was to early……
September 20th 2005 : I had been feeling really yucky all day. I had been up for most of the night not feeling well. Having some strange cramps and some strange discharge ( hindsight it was my mucus plug) There was something not right. I called my doctor and the nurse told me to take it easy and not do anything, that I was being a paranoid first time mom. I stayed on the couch watching TV and doing homework. Dallas came home early from work and he had to go to a job interview that night. I decided to go to work. I was sitting at work so no big deal. He was going to drop me off and when my shift was over he would come and get me. Big Brother season finale was on and we were gonna watch it together. I got off work and he was not there yet. I called him and he was on his way so I decided to walk and meet him. BIG mistake. I started to cramp that evening but the Nurse earlier said that if there were less than four in an hour then it was not a big deal. So I was up and down with the feeling that I needed to go to the bathroom. I couldn't go but I really had to. I decided to eat something. It all came back up. I keep getting sicker and sicker as the night went on.
We decided that I had a bladder infection and that we needed to go to the ER. We decided to go to Alta View so that Dallas and his Dad could give me a blessing. ( At the time they lived close by Alta View) Dallas went into the ER and told them that I was sick and outside so if they could help me. They took me into the Labor and delivery part of the hospital.
I had the most wonderful nurse. Her name was Windy. She had me take a urine sample and put on a monitor. The monitor didn’t pick up anything including a heart beat. They had to get the doppler out just to find a heart beat. I could feel Tyler kicking the whole time and knew he was alive but they couldn't find him. They figured I had a bladder infection. They were not in a hurry to get things moving knowing a bag of fluid and antibiotics would send me on my way. But it was more than that.
I was having a baby!! And it was too soon.
The room went crazy. Nurses were everywhere and doctors were called. I was laying there so confused and thinking that it was to early. That he was not really coming and they were wrong. They tipped my bed upside down and started me on Magnesium to stop the labor and gave me shots of steroids to help Tyler's lungs.
There was nothing they could do he was coming.
15 week early.
It was to early. I knew deep in my heart that it was to early. If he came now he would not make it. I would go home empty handed with a broken heart.
They called maternal life flight to come and get me. They got there and I was to far dilated to take on the helicopter. For two hours they sat there discussing what they should do with me. At that point they called pediatric life flight to take my extremely tiny infant somewhere where they could help him. You see, we made the wrong choice. We went to the wrong place. We went someplace that didn't take care of sick babies.
With me staying and Tyler going they decided to do a c-section at that point and do it without being in an emergency situation. My water had not broken yet. His feet were hanging out. He was coming. The nurse put in my catheter and my water broke.
It became an emergency situation.
As I was wheeled into the OR I had to leave the love of my life behind with no idea how or what the future held for our son. We loved him so much but had never met him. He was too soon!!! As I moved onto the operating table from my bed I had another contraction. Up till this point I had no pain medication. The anesthesiologist decided that I had had enough and didn’t even wait to start putting me under. The last thing I remember was them draping my belly.
Waking up I immediately asked for Dallas and they let him in and he told me that they were working on him and that he had seen him and that he was alive. Dallas had been watching them do CPR on our little son. I then went back to sleep. On the way back to my room I remember being wheeled past my parents and everyone telling me that he was beautiful. They were going to let me see him before they took him to LDS or PCMC. They wheeled him into my room. I couldn't really see him because I had to take my contacts out to have surgery. But Dallas gave him a blessing and I KNEW that we would be okay.
That day our family would be started that day.
Tyler Kenneth Brown, my sweet, amazing and miracle son was born at 1:24 AM on September 21st 2005. He weighed 1 lb 11oz. He was 13 inches long. He was life flighted by helicopter to LDS hospital where he would stay for 30 days. He would have one surgery, and suffer from grade 3 and 4 brain bleeds. He was transferred to have a reservoir placed for Hydrocephalus. He would stay at PCMC for 63 days. He would endure 2 more surgeries( resevoir placement and ROP stage 3) and many ups and downs. He came home one day before his due date…. December 23, 2005.
In four years Tyler has had countless surgeries. ( all since being home) *Feb. 14th 2006- Craniosynostosis skull reconstruction *April 2006 Emergency Shunt placement *May 2006 Emergency Shunt revision * Feb. 14, 2007 Total skull reconstruction *September 2008 Emergency shunt revision * Dec. 2008 Dental work * Feb. 2009 Emergency Shunt revision
We have done Physical therapy and Occupational therapy once a week for almost 4 years. Speech for 2 years. Music therapy for a year. He has started botox therapy where he gets numerous painful injections into his calf muscles. He had weekly weight checks for almost 2 years.
He has had a walker, 4 sets of AFO's, and every six months an in depth eye exam. He has six specialist we see on a regular basis and our regular pediatrician. ( and we were able to recently return to Dr. D and Dr. M) Dr. Marissa was one that I contribute my sanity to for one year and then some in the NICU and for weight checks.
He has had several diagnosis' including Cerebral Palsy, Low vision, craniosynostosis, hydrocephalus and nystagmus and a coloboma ( which is so incredibly CUTE!)
Despite all of this he is a GIANT. My previous post said I would change things. And I would. But only to make it easy for him. I wouldn't change the smile and the Spirit he carries with him.
He has changed my faith. He has instilled a knowledge of a Savior. He has instilled a power of unconditional love and a dying desire to make his life easier somehow. He has taught me that he will get up. That nothing will keep him down. The dreams of him running circles around my legs is just different than it was in my head. Now it includes limps, braces and slow moving circles but he was and has deified all odds. He has shown me that I don't know myself. I don't know love and that I didn't know how much he would impact me and my life.
On this day, four years after the emotions of the last 4 years are very real to me. I can still hear the beeps of the monitors and the feeling of anxiety when I see them bagging my dying child. I see them and hear them EVERY TIME I close my eyes. Yet I can't help but hug him every morning and think of how lucky I am. I can't help but cry when it is hard, and as I cry because it is hard for me I realize that it is harder for him.
On this day I can cry tears of thankfulness, devotion and complete and utter love for that little boy who makes my heart melt. For a smile that takes my breathe away...
We have casually dropped the word BOTOX on the blog a few times. I am sure perking up those ears wonder why on earth Ty needs botox. Here is the quick explanation. The Botulism some how makes his muscles less tight. Not sure how it does it but it does. It allows better movement for him. It is repeated every 3 months or 6 weeks. It is not offered under sedation for him because he gets 4 shots.It is a little worse than an immunization. It is still super tough to hold him down for.
Today was BOTOX day in our house/ Dr. K's. Dallas couldn't go with us today so I was on my own. Ty is a tough tough cookie. He started out pretty good and was a pretty happy kid. We brought a video of Rocket and Little Einsteins for the trip. He watched and played until Dr. K comes in. He STOPS and shuts down.
She has his shots all ready to go, we do a little chit chat and she talks to Tyler. We put him on my lap and turn him over. She puts on electrodes and starts doing the shots. Ty is in Hysterics by this point. Not only does it hurt but he is in an uncomfortable position. He is MAD. MAD MAD.
He is crying and screaming and trying to get away so much that he has broken some blood vessels in his face :( As we got him ready for bed the red puffy blotchy stuff is apparent and the little red rash.
Botox is over. The day is over.
Icing on the cake, Yes I saw the mean comments on my face book over it. No, sedation is not offered here. It isn't suppose to be that bad. He gets 4 shots. BUT we got home and the speech we so desperately need decided that even though we have accommodated her schedule ALL summer she is going some place else to work. Sorry.
Waiting lists are quit long. We are back to square ONE!
Just for a little info on the photo. I had just gotten my camera and he was a dirty little boy so we put him in the tub. I didn't do much blemish control because that was part of the love of this photo. The real love is his eye. It is his " special" eye. He has low vision from Retinopathy of prematurity. An eye condition caused directly from his premature birth. Though we did do surgery to save his eye sight he still has profound loss in his vision field he also has a rare little spot called a Coloboma. That is the tear or cat eye you see in the photo.
His special eye.... Gives him Super Powers!!
I am submitting this photo into the www.iheartfaces.com Blurb Book photo contest. I am granting I ♥ Faces permission to use my photo in a printed version of a book for commercial use and possibly advertising of a photo book on both the Blurb and I ♥ Faces web sites.
For more please go visit the other contestants HERE!! ♥♥♥♥♥
I was wondering if you could come get me? My mom and dad are mean and sent me to time out. It wasn't for very long but it sure felt like FOREVER. It was so hard. I know you would NEVER send me to time out.
I kept looking at "her", the mean one, who turned off my movie and made me sit still. She wouldn't let me off
She was so mean she kept taking my picture and smiling. I told her no no.
Please grandma's I beg you... SAVE ME!!!
* from the mom Gallery*
Ty has been having a problem with not spitting out his drinks. Well we can't get him to stop so we implemented time out. OH it sucks! It the worst. He is so sad. And that look. Oh I want to get him off. I even have to walk away. Not because I am mean but because I am crying. He is a good boy but 3 minutes is a long time for a punishment! 3 whole minutes..
I am overwhelmed with thanks today as I sit here with Ty up dancing, smiling ( toothless as it is) and him home and MINE.
My list:
I am thankful for:
Dallas- He is my sound mind. He never lets my anxiety get to bad. He is always there when I need him and always says the right things. He is a wonderful Dad and it is awesome to hear and see him interact with Tyler and see how much love they both have.
Tyler- What a miracle. In 3 years he has gone through more than most people I know. He has been put through so much. None of it by choice. He always comes out with a smile. He has proven so many people wrong and has done all of the things that they have said he won't. I am so blessed to have him as mine. I wish everyone could know of the Spirit he has.
Family- I am so glad to have a wonderful family. Although we have walked through hardship, feelings and even mean stuff I am so glad that I have them. My sisters call ALL the time or we chat A LOT. My parents are more than willing to drop everything and come if I need them. My Husbands parents are very loving. We feel super lucky that they are Tyler's grandparents.
Friends- I have made a few good friends here in Arizona. Malloree and Mari are amazing. Malloree keeps me sane! She is someone I can call if I need anything. Her straight forward attitude is my favorite.
Doctors- I have some great Doctors. We have had a amazing team of doctors for Tyler in both states. I can't ask for more than that. His neurosurgeon has given me a huge peace of mind. His eye doc has awesome staffing. His dentist is great. His orthopedic doc has given us such hope. His orthotic dude, Brett is amazing and worked so hard to get braces that fit. And Dr. Carroll has been willing to write a referral for anything I want/need or desire to "try."
Medical advances- As I was sitting next to the NICU ( that is where the waiting room is) I can't help but be thankful for the medical advances that have gotten us where we are. My grandma lost 2 babies that now would have made it. How thankful I am that Tyler was born now instead of even ten years ago.
Without medical advances a shunt would not be possible. A heart defect like Tyler's would have made his bleeds worse causing possible death. Cerebral Palsy wouldn't have so many "treatments."
(And with out medicine my brother would be jobless... STILL)
Christ- My Savior, who made it all possible for me to understand some of the things that have happened. A testimony of Jesus Christ and his Atonement for me. Without the Atonement I would not be where I am. I would not be able to accept the things that have happened.
Eternal Families- I am so glad that my family is Eternal. Dallas and Tyler are so amazing I wouldn't want to be without them. I am thankful that the Gospel allows that to happen.
Money, food and a job- Times are tough. I am so thankful we have jobs and that we are "secure." We have insurance, food on the table and places of employment.
Health- We are all relatively healthy. Despite the above issues we aren't stuck in a hospital "serving time" but we are able to enjoy the time we have together.
Respite and Hab.- We have gotten us a good set of sitters for Ty. Kelsey especially is Tyler's favorite. She is amazing. The other 2 are great as well. Without family these come in handy!
I am also thankful for those who read and follow us. Tyler is one of the most amazing miracles we could ever ask for. I am so glad that we get to share him with others. Someday we hope his story will help some of you!
* A special thanks to the texts, comments, tweets and calls regarding Tyler and our well being*
How amazing are kids!! Seriously, I can't imagine my life without that little person. So here is today antics. And trust me .. with this toddler... Every day has something and everyday is AMAZING!!
I worked all day and got home at 7 pm tonight. When I got out of my car I thought I heard him crying but what I walked into was so much better. Sitting on my floor in my front room is Dallas and Tyler but Ty is not crying. He is laughing. Him and his dad are playing so hard he is laughing.
When I get in I sit down and get bombarded with a face full of marker. Ty found his markers in something and decided to color on himself. He mostly got his face and hands but not a drop got on the floor. We can't ever seem to be mad at him so we laughed and feed him dinner and got him in the shower. He was off to bed and the rest is history...
Here are the pictures from Tonight!!!
See.. a face only a mother can love... oh and a grandma!!
