Fragile X Awareness Day!

I can’t believe it has been almost five years since Hayden’s diagnosis of Fragile X Syndrome.  I will never forget that day.  I can replay it like it was yesterday.  Our son was 2 ½ when he got his diagnosis.  Like many of you now, up until that point we had   never even heard of Fragile X Syndrome.  We had no idea what it meant for our little boy.  Our story starts out like so many just like us.  I just knew something wasn’t right.  He wasn’t meeting milestones or if he did meet them it was way later than all of my friend’s babies.  He wasn’t babbling or crawling at a year old.  He flapped his hands and was very hard to sooth in certain situations like crowds and car rides.  Most of all there was just this nagging in the back of mind that said something was not right.  Our pediatrician told us not to worry that he was a boy and he would catch up.  I kept pushing for something to be done.  Finally after almost a year of pushing she referred us to a neurologist.  After several tests and a lot of blood work we had a diagnosis Fragile X Syndrome.  I remember feeling very alone and angry in the beginning.  I wondered so many times “why”, why him, why us, why me?  What had we done to deserve this.  I remember feeling so guilty and still do that I gave him this.  That my little boy would always struggle and it was because of me.   

What I would come to learn through our journey is that Fragile X would make me stronger and prouder than I ever thought I would be.  It would make me a better mom than I ever thought I could be.  It would make my husband an amazing advocate.  It makes me look at the little things as such a blessing.  It makes me never take any milestone or little accomplishment for granted.  Hayden is such an amazing guy, He turned seven this year and he has accomplished what some said he may never. He has such a sweet disposition and anybody who knows him falls in love with him.  He just has a twinkle that draws you in.  Hayden has both cognitive and developmental delays.  He cannot write, and has a very hard  time telling us what his needs are.  There are days that I just don’t know how to make his day better.  Nothing seems to work and that breaks my heart.  It's a struggle, not everyday, but it is a struggle and I know I am blessed to not have some of the struggles so many others do. 

I don't regret my life, I don't wish it away, I wouldn't change a thing - because I wouldn't want to not know Hayden.  Sometimes it crosses into my mind "if I only knew ahead of time".....but what if I did know ahead of time....Hayden would never have been a part of my life. So many amazing people I have met would not be part of my life. The person I have become, the strengths I have developed, the passion in my heart that I have would not be part of my life.

Today is Fragile X Awareness day.  Please take time out of your day to get educated or educate someone else about Fragile X.

Love,

Tina

Happy Birthday Cupcake

Dear Cupcake on your 3rd Birthday,

I've known you for such a short time, yet I feel like you have been in my heart forever.  You taught me that I didn't have to give birth to a child to love them just as much.  From the moment you came into my life, you were mine.  The love I have for you grows every day.  Your smile lights up my day and your laugh warms my heart.  From the first time I saw you and then when you took my hand. From the first time you sat on daddies lap, we knew our family was complete.  Your faith and trust in me from day one will always amaze me.  I hope that you will always know how much you were prayed for, how much you were wanted.  All of those prayers were answered the day you came to our family.  I cannot wait to make you an official member of the Makris family.  You will never know how much I pray that day comes quickly and smoothly.  The day that will  make official what has been in my heart since I first saw you.  Words will never be able to convey  how much you are loved, adored, cherished and wanted. I can't promise you perfection.  I am not perfect, but I will try my hardest to be everything you need me to be.  I promise to always support your dreams.  I promise to always love you and support you in all that you will someday become.   I promise you will never be alone or unprotected ever again.  Thank you for making me a mommy again my beautiful little girl.  

Love forever and always,
Your Mommy

I didn't give you the gift of life, life gave me the gift of you.

Mother's Day Snob

Hayden - We've increased Hayden's medication dose and he seems to be handling it so much better this time than the last time.   Gee I wonder why?  Could it because I decided to increase his meds the same time he got a new little sister?  Not sure exactly what I was thinking.  Even supermom's have duh moments.  I decided to give it another shot since the shock of not being an only child has kind of wore off.  I am happy to say he's doing great!  He is talking non stop.  I can't understand a lot of it but we are getting there.  He is more loving and affectionate.  I mean I am getting random hugs for no reason.  NO REASON!!  He is asking me to lay down with him at night for a little while.  He is talking to other kids at school and still telling me about his day!  He is playing with his sister...really trying to play.  It's been amazing to see these changes.  Keep them coming.

Cupcake -  She is fitting into our family very nicely.  She and Hayden are getting along most of the time.  She is a typical little sister who think her big brother hung the moon and wants to do everything he does.  You probably could guess how this drives Hayden a little nuts every once in awhile.  So he'll feel the need to tell me to put her to bed or put her outside or the most recent...take her to the doctor.  Over all they are getting along great.  That 5% chance of us not keeping her paralyzes me sometimes.  My heart races and it's complete dread.  I don't know what we'll do if that happens.  She feels so much like ours already and it's been less than two months.  I have to keep reminding myself that she is not ours officially yet.  She has bulldozed (well clumsily fallen) herself into our hearts so deep that even the thought of not keeping her makes me sick.  I try not to think about it, but it's there just in the back of my mind.  Every time I fill out my reports or take her to an appointment or have to tell someone she is our foster daughter...Every time I have to send in a vacation request and ask permission before I do something or send in a back ground check on a friend or family member so they can babysit, I am reminded that she is not yet a Makris.  Every time a friend asks if it ok to post a picture or I have to ask a friend to take down a picture because we just can't do that, I am reminded.  I cannot wait for the day they tell us she is ours and thaat we can adopt her.  I cannot wait for the day I can post pictures on this blog or on FB of her face. We are throwing a BIG PARTY people.  Big. Huge. Party. 

This past weekend was mother's day.  I am not ashamed to admit I am a mother's day snob.  You will never hear these words come out of my mouth "oh I don't need anything for mother's day" or "don't waist your money on flowers".  Because lets be honest woman really don't mean that when they say it.  It's like setting your husband up to fail.  We all as mother's want to be appreciated in some way.  That's what I think mother's day is all about.  I think it's the perfect time for a husband to not just talk about how much he appreciates his wife as a mother, but to show her.  I know how lucky I am that Mike get's this!  I am always spoiled on mother's day..ALWAYS.  Not only do I have the guy that tells me how much he appreciates me as a mom (not just on mother's day) but he shows me.   I don't think you have to spend a ton of money to make is special either...I'm not that bad.  I love flowers!  I love the way they look on my table.  I love the way they make my kitchen smell.  I think it's because I can't grow "real" flowers that have roots.  I know the fresh cut ones are going to die not matter what and I really have no control over that, so there is no guilt when I throw them away.  This year Mike got me a dozen roses that as he handed them to me he said "listen I have no idea how these are going to do they were on clearance at the grocery store and I only paid $9 for them".  They were kind of sad looking when I cut them and put them in water.  The next day they were the most beautiful and perfect roses I have ever seen and they still look gorgeous.  Some of the best flowers he has given me came from somewhere other than a florist.  So does this mother's day confession make me a snob?  Probably but I just don't care.  I worked very hard to be a mommy the first time and I've been through a lot to be a mommy the second time.  For many years I sat and watched mother's day come and tried really hard to not be jealous of all the mom's around me celebrating.  While I continued to struggle to become a mommy.  I'll admit that was a really rough time in my life.  I know there are so many woman out there who had a much harder time than I did.  There are many more woman out there who are still not able to be a mommy.  My heart breaks for those woman and I always take a moment to say a prayer for those ladies on mother's day.  I've been there I know what a torment mother's day can be.  I am proud of my title as mom.  I cherish it and all that it means.  I look my babies in the eyes and thank God for them.  I am one blessed momma!

I hope you all had a wonderful momma's day and that you were appreciated.   I am surrounded every day by some really amazing mommies.

Love,
Tina

Gentlemen Start Your Engines!!!

The talk of taking Hayden to a NASCAR race really got serious when we went to Las Vegas and toured the track.  We had never seen Hayden so excited about anything.  From the minute we pulled into the track from the moment we left he had a huge grin.  We could just feel his excitement.  That was when Mike and I really started wondering how we could make this happen for him.  We knew the noise and the crowd would be our biggest issues.  Hayden hates loud noises and big crowds. We knew the only way that he could enjoy a race would be in a suite.  Then we started discussing  the cost of making that happen.  We knew there would be no other way so we made the commitment and started praying he would enjoy himself.  That he would make it through the whole race and that we would not regret it.  We knew we had to try at least once and if he didn't enjoy himself well then we didn't have to do it again.  So on the weekend of April 13th we took off on the 5 hour drive to Dallas.  Because of traffic we basically had to head straight to the track on Friday.  He Because of one amazing grandma and ton of awesome family, friends and strangers Hayden was going to meet his favorite driver Juan Pablo Montoya (JPM).  So we waited about a half hour for him to ride up on a golf cart and then I said a little prayer "lord, please let Hayden recognize and be excited to see him".  He knew who he was from a distance and the amazement on Hayden's face was worth more than we paid for our entire weekend.   JPM got on his knees and said hello and talked with Hayden for a few minutes, we took pictures and then JPM presented Hayden with a bag of goodies.  At about this time a crowd began to gather so Hayden got very hyperaroused and panicked.  JPM looked at the crowd and said "You need to all back up and wait until I am done with this little boy".  He at that moment in my eyes became the most amazing sports guy ever!!!  I have to say the crowd was awesome too.  They all backed up and one guy even offered to take the stuff Mike was holding so that Mike could take care of Hayden.  Really says a lot about NASCAR drivers and fans.

Hayden Meeting his favorite Driver

This was JPM telling the other fans to back up!

Now I know you are all wondering if Hayden enjoyed his first NASCAR race.  Well I will let you be the judge of that.

http://www.youtube.com/watch?gl=US&hl=en&client=mv-google&feature=mhee&v=EmxY7beX5oI&nomobile=1

In case this video was not enough to convince you and you have a little more time watch this one.

http://www.youtube.com/watch?v=EyDKSG_KoYk&feature=relmfu

Mike said Hayden was like this for three hours straight!  Didn't even want to get out of his seat to eat!  When he walked into the hotel room after the race he still had a huge smile on his face. He started telling me all about the race and the pits.  So Yep it was WORTH EVERY PENNY.  The boys are already trying to figure out what track they will be visiting next year.

Again I send you all a heartfelt thank you for sharing the Facebook page or saying a pray.  We are so blessed to have such amazing family and friends in our lives.  To those of you who had never heard of Hayden or Fragile X, I am so thankful that you took the time to find out and help us out.  There is so much negative in the world it is so nice to know that there are people who still care.  People who have no idea who my little boy is stopped to take a minute and help him meet his favorite driver.  That is just amazing to me.  Because of all of you, Hayden got to meet his favorite driver and Mike and I were able witness our little boys dream come true.  To think I wasn't even going to go.  Geesh what was I thinking. 

Not sure if he will ever see this but, Juan Pablo Montoya you are a class act.  From the bottom of our hearts thank you for taking time out your schedule and for being such a nice guy.  To Earnhardt Ganassi Racing and Shayna Keller I cannot thank you enough for everything.  I know that there are so many more people to thank and we will never truly know how many people had a hand in this, please know that we will forever be grateful. 

Love,

Tina 

Try and keep up

Well a lot has happened since Hayden's birthday...try and keep up:

Hayden: The drug trial is going really well. They are seeing some big changes at school. We are seeing some changes at home. He is able to answer almost any question you ask him with an appropriate answer...HUGE!! Sometimes he needs a little prompting but for the most part he answers me. He. answers. me. Yay!!! We are holding steady at a pretty low dose. We tried to up the dose and that was not fun. My fun loving, easy going little man was anything but. So back down we went. One more exciting piece of information I think I can safely say Hayden will be meeting Juan Pablo Montoya!! Thank you to his Nannie for getting the ball rolling. Thank you to all of you who liked and shared the page. I really, really hope he gets to see the car!! Our people (daddy) got a call from his people (the PR department) saying that we are to meet them at the tunnel friday night. We really have no idea what is going to happen but we are hoping for something big. I cannot wait to see Hayden's face light up when we get to the track. If it's anything like it was in Vegas with no actual race cars we are going to need some tissues. Mike and I have already decided we are going to have to wear our sunglasses the whole time so nobody knows we are crying like babies.

This would be my favorite Nascar Driver

We have a new cupcake - a pink one!! Wow is a pink cupcake different from a blue one. She is two and half and girlie, girlie, girlie. She likes dresses, and purses and her hair done and shoes. This little cupcake comes with a lot less risk than our last cupcake. There is still a small chance we won't get to keep her but it is a pretty small chance and we should find out sometime this summer. She has been through a pretty rough few years so we really hope we can keep her and make her feel safe and loved forever. She is so easy going and loveable. She fits right in!! She has a lot of sleeping issues that we need to work through right now. Please say a prayer for her that all of these go away and she can have peaceful nights.

Have you ever seen a two year old do this? She is drinking the milk from her cereal

So tomorrow we pack up and head out on another road trip. Thank goodness this one is only 5 hours. Meeting Juan Pablo Montoya on Friday, Hayden and Mike go to the race on Saturday while cupcake and I try to amuse ourselves in the hotel room. Then back home on Sunday. Hoping to get a little Greek Easter celebrating in. Since I did not go shopping for the proper Greek Easter dinner we will more than likely be eating take out. Maybe we can hit a Greek restaurant on the way home. "What do you mean you don't eat meat?" "Don't worry I make lamb". That was one of the only lines from My big fat Greek wedding I remember.

Oh one more piece of info.....I did it...we are now officially Texans. I took the kids pictures in the bluebonnets. I really wish I could post a picture of both of them because they came out so cute. This one of just Hayden will have to do. By the way he did not think posing in bluebonnets was manly at all! He had the "are you kidding me" look on his face the whole time.

Ok, so those of you who read my blog know how crazy this is to me. How people pull off to the side of the road and walk through who know what to get pictures in the bluebonnets. I totally cheated. Yep cause it would be my luck for one of my children to get attacked by fire ants or bit by a rattle snake. So yes I completely cheated. This particular patch of bluebonnets is in the parking lot at Hayden's school. Yep all nicely mowed around it. I completely searched the area for bugs and put down a blanket for the kids to sit on. Yep I am a yankee and my children were not harmed in taking of these pictures.

She still found a bug

Stay tuned for updates from this weekend!

Love,
Tina

Dear Hayden Michael

Dear Hayden Michael on your 7th Birthday

Seven years ago you made me what I always wanted to be, a mommy. March 18th, 2005 was the best day of my life. I didn't know at the time but my pregnancy with you would be my last. I didn't know but many of those special moments would be my firsts and my lasts. I am so grateful that I cherished every moment of them. The first time you kicked me, I was trying to take a nap. The first time I got sick, I ate hot fries dipped in frosting. That one might have been my fault. The first time I heard your heart beat. The first time I saw your face on an ultrasound. Opening up that piece of paper that told us you were a boy. The first time I heard you cry. The When they placed you on my chest my whole life had new meaning. My life for the first time had a purpose and everything clicked into place.




Watching you grow and learn has been a pure joy. Every Milestone has been a triumph. You have made me a better person than I ever thought I could be. You have made me a better mommy than I ever dreamed of being. You bring the sun through the rain. You bring laughter through the tears. You bring the dreams through the hopelessness.

I only hope I can be half of what you think I am. The unending love you have for me brings me to my knees. The trust you show me humbles me. Thank you for being the most amazing boy a mommy could ever ask for.

Please know that I will screw up it's what mommy's sometimes do. I promise to always love you unconditionally and always believe in what you can do and never underestimate all that you will become.

Love,
Your mommy

Off And Running!!!!

Well today is day number 1 for Hayden on the STX-209 open label medication. We're off and running. We are so excited and so scared. I keep telling myself not to expect too much. Then I hear the stories of the kids who are on it and think Wow just Wow. Kids who were not speaking a word and are now speaking in sentences. A boy with so much social anxiety he couldn't talk to his peers at all just asked a girl to the prom!! Because. of. this. medication. How darn exciting is that. Now Hayden is on it and the sky is the limit. Yep I am going to expect too much but what an amazing feeling to have something tangible to reach for. I cannot wait to see what this does for Hayden. Not that he could be more awesome but wow I can't wait for his awesomeness to grow.

Our foster care situation has been dramaless. Which has kind of been nice. It's been slow and I'm getting very few calls. I don't know why it's slowed down and I haven't asked...yet.

Saturday is Hayden's birthday party. My baby is going to seven...SEVEN! Wow when did this happen? I thought I would try something a little different this year. I decided to ask Hayden for input on his party. It is his birthday after all. Imagine how surprised I was when he knew exactly what he wanted. EXACTLY. I can barely get him to tell me what he wants for breakfast let alone everything he wants at his birthday party. So this could mean one of two things. A) he is really starting to care about stuff like this -or- B) He thinks I stink at party planning. I'm going with (A). I would like to ask that everyone coming on Saturday keep in mind this entire party was planned by a SEVEN year old, right down to the kind of ice cream being served.


I had to pull out a pic of Hayden at four because I couldn't remember what his birthday theme was. It was bugs for anyone who might be wondering. I will say I made the cutest darn bug cupcakes. See cute right?



Public Service announcement:
I was standing in line at Target the other day and had a complete internal battle with myself. Please note that I said internal. The battle was about at what age is too old to have a word on the butt of your pants. I'm not taking about the name of your jeans but a full blown word. I have figured out the answer because I am a complete and utter genius. You are too old to have a word on you butt when the first thought in your mind after reading the word on someone else's butt is: "sister if your butt is juicy you need to seek medical attention cause that just aint right to have a juicy butt" Since this was my first thought I guess I am too old to have words on my butt. Besides what would my pants say: "Hey I like cupcakes don't judge" and that's just too much to have printed on a pair of pants anyway.

Love,
Tina