Is this about me or him??

I heard that phrase a few times during a recent visit with an awesome Fragile X family, a family that I am so happy to call friends. It was amazing to watch Cindi and Chris Rogers parent.    I learned so much.  It was so great to pick their brains while they were here visiting.   Hanging out with them and their boys was SO MUCH FUN!!  In the beginning I thought that's all it was, one FX family getting together with another FX family.  I didn't know at the time how their words and their parenting would shape the next month in our lives.   Mike and I had no idea how much we would lean on words that were said or concepts that were touched upon in simple conversation.

You all know if you read the blog regularly that Hayden is having a pretty rough year.  The toughest we have seen not only at school but at home as well.   I haven't wanted to blog or even talk about it. Frankly it's been heartbreaking to watch and believe me I have have had to watch A LOT.  Hidden in closets so that I would not be seen to observe what his day is like.  It seemed so cruel to me for the district to ask me to compare my child with his "typical" second graders.  I mean hello...I know he's not like a "typical" almost 8 year old child.  Why do I need a reminder??  I have an almost 8 year old who still loves "goodnight moon" and an almost 8 year old who can't ride a bike, or read or do math and I have an almost 8 year old who can't tell me what he wants for Christmas.  I KNOW the difference.  I see it everyday in my community, on facebook, and all around me.   I watch as his three year old sister does things that he can't.  He has a hard time when daddy takes him to school cause that's not our normal routine.  He has a hard time when any little kink gets thrown into our normal routine.  Why do I need to go and "watch" him in a class of his typical peers???  Why???   But I did it and I can admit that after I put the emotions to the side (yeah that's me crazy mom crying to the gen ed teacher) and really watched, it was eye opening.  These words kept coming back to me "this is more about you then it is him".  I had to ask myself several times  "who is this about?"  "who are we doing this for"?  Realizing that it was about ME and it was for ME (I can be selfish like that who knew?).  Realizing that I had a little boy who was so frustrated and overstimulated in a situation that "I" thought was the right situation.  In a situation I pushed for because that's what I was told I had to do.  This was about me and not Hayden.

These last few weeks have opened my eyes to a whole new way of thinking.  It has opened my eyes to look at Hayden differently and to look at what his needs are.  I am so thankful for an awesome Special Education teacher that goes above and beyond what each individual child needs.  I got to watch an entire lesson that was taught laying down cause that is what Hayden wanted to do.  I got to watch my little boy be happy and successful.  I got to see how proud he was of himself because he WAS successful.  We now do homework laying down or sitting on the floor instead of at the kitchen table chair.  These things that I so selfishly thought I had to do.  I mean really sitting in a seat is so overrated anyway.  Google employees don't sit in chairs they sit on balls and they are supposed to be the happiest people around.  So maybe he will get a job at google someday.  Is there really anything better than to see your child successful no matter what it is or at what level they are at?  I have had to let go of some of my expectations and realize he's just not there.  I have had to ask myself questions I didn't want to ask or even think about.  I have learned though that once you take the first step the second is easier and the third even easier.  Am I giving up on my goals for Hayden?  Not at all...I'm just reevaluating how we get there and how long it might take.  In the words of my husband, we are "going back to blocking and tackling".  I think it means we are going back to basics.  I know we have had a lot of huddling and very few touch downs.  But the touch downs that we have had have been amazing and we would probably get penalized for excessive celebrating.  So for now we take a step back, go back to basics and start thinking about what is best for Hayden.  I have looked at Hayden with new eyes.  Lately those eyes have been tear filled.  I have seen the ways I have failed him and I am trying to make that better now. 

Moving on to Cupcake..it's still hard for me to type Cynthia...lol  She is having a sleep study done next month.  That's another blog post for another time.  Please pray that we find answers to her sleeping troubles.  Can I say I want answers but nothing too dramatic?  Can I pray for that???  Again sometimes I can be selfish I admit it!!  She is talking up a storm and doing what all good little sister's do...driving her big brother a little bit crazy.

Me well I feel like I am treading water in one place and not going anywhere.  I feel like one thing gets resolved but there are four more waiting.   I feel like one mess gets get cleaned but there are eight more waiting and two more messes currently getting created.  I know I am the ONLY mom who feels this way.  EVERYONE else has it totally together.  Every other mom is feeding there children four course meals and has all the Christmas presents wrapped already.  I just know it's only me treading water and not going anywhere.  But, hey I bought a pair of non mom jeans so life is good.   Honestly in light of recent events I am blessed to have IEP's and sleep studies and messes.  I am blessed to have noise and two little children fighting.   I am blessed on Christmas morning my babies will open their presents that I have wrapped.  I am blessed to be treading water.
 
 

Love,

Tina

Heaven and Earth

A few blogs ago I talked about the posts that get put into drafts for some reason or another.  This is one of those posts.  I figured it was now or never.  It was written very early on when we got Cupcake. I didn't change any of it except the ending.

I look at this little girl so filled with emotion I have no idea what to do with.  It's like March 18th again.  The day I gave birth to Hayden.  Except I did not give birth to her someone else did.  She is not even technically "mine" yet.  However, I look at her and know just like I know with Hayden..I would lay my life down for her.  I would sacrifice whatever I had to for her.  I would move heaven and earth just like I would for Hayden to see her smile.  I cannot imagine my life without her.  From somewhere in the back of my mind the guilt comes.  I am taking another mommy's baby.  Someone else loved her first and lost her.  That woman's loss is my gain.  That woman that do not even know.  I cannot imagine the pain she felt or the loss that went through her.  I can't imagine what she is feeling now.  Does she hate herself?  Does she hate me?  I've had this little girl in my life for only a few weeks and I don't want to know what it would be like to loose her.  I don't ever want to loose this little one and pray that never happens.  I've seen the file I know the kind of life she was dealt.  I know that it was troubled from the beginning.  My heart breaks at the trauma one little girl has had to endure.  My heart breaks at the trauma and rough life her biological mom has had to go through.  Her loss will be my gain.  Does she think about her?  Would this life we are giving her be the same kind of life she would have dreamed for her?  Would this be the life she would have given her if she could?  Am I doing what she would have done if she could?  I wonder what I would say if I ever ran into her?  Would she recognize her?  How do I answer the questions...why don't you have baby pictures of me? Why did you take me from her?  Why didn't you have a baby of your own?

Can I meet my biological mom?  I would like to say that I would be supportive of this one should she ever want too, but, I know I would die a little inside.  Because what if she doesn't love me as much?  What if the bond they have is greater?  What if she's mad at me for taking her?  What if I can't explain it all in a way she will understand?    What if she wants to see the file?  Do I protect her from that?  Do I show her?  Do I even keep this file if it all goes through to adoption?

How do I explain how much I love her and how much I wanted her?   How much I promise to move Heaven and Earth for her.  How much I would give my own life for hers?  How do you say to a little girl that's not even yours?  Will she someday understand?  Will I even get to tell her all of this someday?  Will she be mine forever?

Three days from now I will get to show her for the rest of her life how much I love her.   I will get to move heaven and earth for her.  She will be mine forever.   I will pray that when the time comes all the words come out right and love shows through.  I pray for the mommy who gave birth to her.  I pray that wherever she is she finds peace. 

Love,
Tina 

We have a date!!! We have date!!

We didn't see her first steps....but we will see every step she takes from here forward!

On October 19th in a private ceremony in front of a judge...Cupcake will officially be a MAKRIS!

I am going to stop now cause emotions are pretty high.....

Thank you so much to everyone for saying prayers and for hoping with us.

Pictures will follow as soon as we get home!

Love,
Tina

To post or not to post

This is one of the posts that has been written and rewritten and deleted, then written again.  I have a few of those in my drafts.  You know the blog posts that just feel too personal or too ugly or not positive enough.  Maybe I'll post them or maybe I won't....

I am usually one of those FX mommies who rarely complain about the life God handed us.  I rarely get depressed about Fragile X.  I try really hard to not beat myself up.  Toot-ta-ta-toot (that's me tooting my own horn)!  I learned very early on that being depressed or getting mad about it helps nobody.  It doesn't make life any easier in fact it make life unbearable.  Who wants to be around a negative my life sucks person?  Not me!!  Sometimes though I go there.  I get mad, I get sad, I start to blame myself.  I can usually bring myself out of the downward spiral really quick.  The past month has not been one of those times.  It's been probably the hardest time since I can remember if not ever.  Hayden had a really rough transition to school this year.  I mean REALLY ROUGH.  I've never seen anything like it with him.  I walked to the car and cried more than once every week for a month and almost every night.  We were getting reports home like we have never seen.  Hayden destroyed the classroom, Hayden came out of the bath room naked, Hayden is being violent towards other kids and teachers, Hayden is eating his assignments.  Day after day after day we were getting reports like this.  The more I tried to pull things out of our bag of tricks the more things failed.  We knew the start of school would be rough it always is but this was beyond anything I could have imagined.  I was at the point of not having any idea what to do.  I hate that helpless feeling.  I hate not being able to help him.  I watched as my easy going little boy changed.  I mean I didn't recolonize him.  He was mean and distant.  I blamed myself...I did this...my genes.  I prayed, I cried, I pleaded.  Anything just please bring him back, I'll do anything.  Daily notes and calls with the teacher, observations, talks with the principle and so much more was going on.  The worst part was everybody was stumped.  We talked about what it would take to change schools.  We talked about med changes and maybe adding more meds.  One call changed our world...one call...a call I made to the teacher saying "please understand this is not Hayden, this is not our little boy" and she said "I know we are working on the problem and we are going to fix it".  I have never in my life felt like a weight had been lifted, like I did in that moment.  I mean really who is going to believe the mommy?  Every mommy says their baby is the best and would never do any of these things.  No really my baby is the best and has never done any of these things.  We implemented med changes at home and they implemented a lot of changes at school.  Whala my little boy is back.  It's like we have a whole different little man.  I have no idea what was happening in that classroom but thank goodness everyone was able to fix it.  Thank goodness Hayden has a team that does not have their heads in the sand with the attitude of "lets wait and see".   Thank you to everyone who I cried to or turned coffee's and lunches into a complain session.  Thank you to the few people who knew what was going on a prayed with me.

Cupcake - we are waiting on go.  There has been a date tossed out there but It's not definite yet.  Wating...waiting and waiting.   She is loving everything about school and how social it is.  She's at the age where she is still innocent enough to tell on herself.  Here's a tidbit of what our conversations are like ...
M: How was school?
C: Good....sit down (in a very stern voice).
M: Did the teacher tell you to sit down?
C: Yea a lot.  (giggle)

So I am really working hard on trying to loose weight as I have told you all before.  I am my first 20 lbs down and ready for new jeans.  Finally ONE. SIZE. DOWN.  Being shorts really stinks.  Anyway, it seems like all over the internet everyone is talking about mom jeans.  I follow a few blogs and they are talking about the evil of the "mom" jeans with very specific criteria of what "mom" jeans are and are not.  I am stressing out about this people!!  I find myself checking out other woman's butts and assessing if they have "mom" jeans on or not.  What. is. wrong. with. me? I am checking out butts of other woman.  Yep now all my friends are gonna make we walk in front.  It's for research people geesh don't get your "mom" jeans in a bunch.  I can firmly say that there is a difference and those "mom" jeans not very attractive. Even nice butts don't look good in "mom" jeans.  I have been finding myself getting excited when I go through the check list and determine that a pair of jeans are not mom jeans.  Then I have to stop myself from asking the person what kind of jeans she has on.  Cause you know that wouldn't be creepy at all "hello lady I have never met before, your butt looks good, what kind of jeans are those?"  Any way I am too stressed out to buy jeans because A) it's too much criteria to think about and B) non "mom" jeans are really expensive.  Surely not all my jeans are mom jeans right?  Yep they are...sad very sad..More to come on the "mom" jean saga....maybe

Love ya,

Tina

Conference, Adoption Attorneys, school starts...oh my!!

I am going to try and put a whole lot of information for all of you in one short blog.  The kids are currently engrossed in Fresh beat band.  Yes we have moved from Dora to Fresh Beat Band.  We're even starting to get into Max and Ruby.  What is up with Max and Ruby?  Do they not have parents??  Are they out doing what rabbits do while their kids are baking cookies and getting bunny badges?  Why does the grandma take them on vacation?  Are Louise's parents aware that there are no adults at home?   Anyway moving on now....

Fragile X conference in Miami.  This was the first conference that I did not beat myself up.  Never once did I call myself a bad mom.  Don't get me wrong I had a lot of duh moments and oh crap why have I not done that???  This was also the first conference I came home and actually implemented what I learned.  Why did I do this for the first time, because I spent more time taking it in and learning than beating myself up.  For the first time I looked at the older boys and thought "look how happy they are" and "I hope Hayden is always that happy".  Don't get me wrong I have high hopes for Hayden and I always will.  But, as long as whatever he is doing he is happy doing it...that's ok.  Lets be honest do you really think the president is happy anyway?  So you know what I'm ok with Hayden not being the president someday.  This was also the first conference I socialized...I mean really I met new people, hung out with some really great friends and ate way to much food.  I love all of that about confernce It's like one big family reunion of people you don't know and some that feel so much like family that it hurts when you leave.  It's so hard to "hang" with kids...you know cause somebody needs their butt wiped or is trying to dress the cat.  So going to confernce without kids gives us the opportunity to socialize, hang out way to late, sleep in, get starbucks every morning. Not to mention eat out without having to a) scarf it down so fast because someone wants to watch cars or b) sit forever after everyone one else is done and table next to you has had three sets of new customers because somebody eat slower than winter comes in Texas.  All of this would not have been possible without my mom Thank you so much for watching the kids so Mike and I could enjoy another conference.  We had a great time!

We have "hired" an adoption attorney!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  We have started the paperwork.  Now I am just waiting for a date, still waiting, still waiting, when is it going to be???????  Who do I need to call to get a date already?????  There  is very little that can go wrong but still there is that small chance until everything is signed I will not be relieved.  We are one small, slow, baby step closer.  I told you I am not patient right?  Keep praying with us please.

School starts this Monday!  Panic Attack, Heart racing, ...holy crap!!!  I am freaking out...not because I have a little boy in the second grade or my little girl is going to big school.  Nope I am freaking out because I have to get two kids ready and out the door at the same time, for the first time EVAH!!!  Go ahead laugh at me, I'll wait.  Are you finished?  Ok moving on....Cupcake starts early intervention preschool and Hayden is going into 2nd grade...sigh.  We have our backpacks and our lunch boxes and a lot of school supplies.  We have our first day of school outfits picked out...kind of...one of us keeps trying to decide if she wants to wear a dress or pants and the boy is refusing to wear a button up shirt because only daddy wears shirts with buttons.  So we'll see what Mondays pictures look like.  For the most part on the outside it looks like I'm one put together mommy.  I am so not one put together mommy.  I made sure the tissue box in the car is full and I made Mike take the day off.  I need support, I admit it.  I fully intend on dropping the kids off and staying strong, waving goodbye, giving the big mommy hugs they like and then going to starbucks...and crying in my grande, non-fat, iced, caramel machiatto.  Mike will tell me several times that I cannot go peek in any class room window's cause you know they arrest people for that.  Then he'll tell me that nobody has stolen my babies while they were on the playground and no you cannot call the school and ask them to check.  Then he'll say maybe while the kids are at school you can clean up the house...then I will have to beat him with my meat masher....yep that is our first day of school cycle.  What can I say I like routine...maybe I can make a picture schedule for me.  drop kids off, get in car, clean snot off  face, starbucks, eating chocolate in closet, physical restraint, pick up girl, check for physical trauma, pick up boy (what? he's not riding the bus on the first day), check for physical trauma, ice cream.....start it all over again the next day.....
 


There you have it!  In a nutshell our last few months.  Hope you all had a wonderful summer and are ready for school to start.
Love,

Tina  

Disclaimer...nobody proofed this and I had 20 minutes to get it out the door...don't critique it...that's just really annoying...love you!!

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

Advocacy and Stupidity

March wow it's here already. March has always been one of our busiest months. Those of you who follow my blog regularly know that not only is March Hayden's birthday month but its also the month that we recognize Fragile X Advocacy Day and Spread the word to end the Word day.
So on the same day, March 7th, we advocate for Fragile X and we advocate against stupidity.

Fragile X Advocacy Day: March 7th
On this day 150 Fragile X advocates from all around the country are meeting with Congress to help secure funding, advance research, and spread the word about Fragile X Syndrome. Mike is one of those advocates again this year. I think this makes 3 years in a row that he has traveled to D.C. with our fragile X family to advocate for our little man and many others just like him. I cannot tell you how proud I am to be his wife. I cannot tell you how awesome it is to be part of this amazing and supportive FX family. How cool it is to think that today in Washington D.C. our stories will be heard, our pictures will be seen, our letters will be delivered. Our representatives will see a picture of Hayden and our family. How cool is that? How great is it that these amazing advocates spend their own time and money to make sure our voices are heard. From the bottom of my heart I thank each and everyone of you for being such amazing people.

Spread the word to end the word day: March 7th
Some day I hope that we will live in a society that no longer needs a day like this. Someday I hope everyone realizes that when you say something is "retarded" no matter how you are using it, it's painful to someone. I don't like it when it's used as a medical term. I don't like it when it's used to create awareness and I especially don't like it when its used as slang. I signed a petition years ago to never use it and to call people out when I heard it. I NEVER use it and you most definitely would never hear me use it to describe Hayden in any way. Not to create awareness and not to describe his disability. Stop using it! Because what you are are loosely referring to as retarded will never come close to what my little boy is. It will never describe the goodness that radiates from him. I am thrilled to say that our school district no longer uses the term. For the first IEP in two years I did not have to hear the word uttered once. I did not have to ask them to not say it. I cannot tell you how awesome it was. I want to say thank you to our family and friends who no longer use the word around us. I REALLY want to say thank you to our family and friends who have stopped using the word all together. It means an awful lot to our family to be respected in this way. Those of you out there that continue to use it as slang; grow up and STOP. Show some respect for the people around you. If you need a list of other words you could insert in place of it let me know. I will be happy to send you one.

Happy Fragile X Advocacy Day,
Tina and Hayden

How do you know when....

How do you know when it time to limit the electronic time in your house? Let me just help you all with that...It's time to limit the electronic use in your house when this happens:

Hayden from the upstairs bathroom is screaming "mommy, MOOOOOMMMMM, Mommmmmy,". I because I am a rock star super mom, drop what I am doing (making an apple pie) and go running up the stairs to see what is about to eat or kill my child. He then looks down at his pants and underwear around his ankles and says "put pants up please". Now why could the boy not pull up his own pants and underwear you might ask....Let me just tell you, he did not want to put down the ipad. Yep the boy did not want to put DOWN the ipad!!!! Whats worse is I actually pulled up his pants. HELLLOO rock star super mom what were you thinking?? Um, hello he said please. Okay so I wasn't making an apple pie but the rest of the story is true.

Sooo it's time we start limiting the electronic use in the Makris household.

It's not gonna be easy. Look at that face!!!

How do you know when you need a break? I mean a real break...not the go to the grocery store or go by yourself to the doctor kind of break, but a real break? The kind of break where you know if you don't get away soon for a decent amount of time you are going to have a nervous breakdown break? You need that kind of break when this happens....

You have just found out for the fourth time in one month that you are not going to get a baby they matched you with. You then find yourself talking to yourself in the mirror and you actually answer yourself. When you actually tell you that you are wrong and that you don't deserve what you are asking for. Then you start plotting with yourself elaborate schemes to get what you want. Even the me responding at some point thought I was nuts. I'll admit that I tend to talk to myself often but this still freaks me out a bit. Desperation and stress make you think and do weird things.

How do you know that you have married the right man? You know you have married the right man when this happens...

You are cooking burger and bashing it like a lunatic while sobbing and repeating the phrase "I don't think I can do this any more", over and over again. First you think why is he not hugging me? Why is not coming close to me. Who wouldn't want to hug a sobbing meat bashing woman? Really, I do not understand men. Then after you have successfully killed the cow for the second time, you turn around, look at him and say "what are you thinking?" He then says one phrase, just one sentence "maybe God is not ready for us to take care of another baby until we take care of ourselves". Your first instinct is to bash him over and over again with your meat basher. Then in that next second you realize he is absolutely right (hate it when that happens) and you really needed to hear what he has just said. You needed that wake up call, for once you needed to hear that more than you needed a hug. FYI I do have a meat basher it is really awesome got it from pampered chef...I'm pretty sure that's what its called too ;)

Yeah I think I married the right man...

I do not recommend the second two scenarios in the same day. That is just too much realization for one day. I like my ah ha moments to be a little spaced out thank you very much!

Sooo what are we doing about all this realization that is taking place in the Makris household? The first situation happend today so I will wean the boy slowing off the addicting Ipad. As for the last two I went to Michigan by myself for my birthday and took that much needed break. I stayed up late, slept in late, ate seriously good food and had a bunch of much needed family and friend time. I got time with my niece and nephew and didn't have to share them with anybody! The last situation well I can honestly say I am taking care of myself and my family. I am exercising, staying positive, organizing and actually cooking again. Go me I'm a rock star super mom. Hey, Where did I put that cape?

Love you all,
Tina

Where are your pants?

"Hayden Michael where are your pants?" This has been the most commonly used phrase in our house this weekend. I mean really it's a borderline epidemic. I do not understand why the boy doesn't like pants. I have scary visions of him being "that kid" with the pants hanging down to his knees in the ten years. I'm sure it's sensory related...blah blah. White trash with cash came to mind several times this weekend. I am sure our neighbors were looking out their windows and wondering what kind of trash lets their kid run around in the front yard with only his football boxer's and a tee shirt? Yep that be us white trash with cash. Southgang anyone? Extra points for anyone who knows what I am talking about. A bit of 80's hair band trivia. As if a little boy running around in his underwear isn't bad enough, Mike is grilling last night and I look out and he is wearing socks with his sandals. You know the look that brings fear into the hearts of wives everywhere and then is immediately followed by the "please tell me you didn't just go to the store like that" thought. Mean while I am trying to kick my style up a notch thank you to pinterest. Not that I need it cause standing next to them I am one hot fashionista. Thank goodness they are both super cute or we'd be in trouble. I've spent a lot of time on pinterest. I am a newbie to it so it's what should be expected...duh. I am convinced you are not cool unless you pair everything with a scarf. I have been wearing scarfs forever...so I have been 1/3 cool forever..right? I have also learned from pinterest that I need more structured purses. You know the kind that don't fall in on themselves...so uncool!

Public Service Portion of the blog (intended only for Mike Makris)

Mike "innocent batting of my eyelashes" You want me to be cool right? You want me to fit in with the cool moms right? Well I am telling you now that I will be making a few purse purchases over the next 6 months so that I can be cool and fit in at the local Starbucks and Target and Wholefoods. Oh and they will be in a solid really cool colors that will only go with one shirt hence the reason I will need several. Don't even get me started on the jean budget I am going to need. It's really for you Mike Makris and our little boy. You don't want to be seen with a uncool wife and Hayden sure can't be seen with an uncool mom. I mean how can I compete with your socks and sandals and his football underwear if I don't have a few of these basic cool mom necessaries? Really I don't even know how you can even come up with an argument so don't even try. Just give in to the pure logic that is presented to you. Don't make me bat my lashing again.

Hayden is still in the STX209 trial. We are seeing a big FAT Nothing!!! Except a crazy hyper boy about 20 minutes after he takes the pill. I am going to just put it out in the open and say that I am going to be so disappointed if at the end of all of this we find out we are on the actual medication. He's been doing great even with the blood draws. Not fun while it's happening but our little man pops right back after we get in the car and head home. Hayden is on a new kick where everyone is called Samuel (he has an uncle Samuel) but its because of 3rd and Bird that we are all now Samuel (but don't tell uncle Sam that). He is also calling Mike...well Mike. I'm still Mommy thank goodness or occasionally Mommy Tina or today I heard mommy Makris. They are teaching the kids their parents names at school. I am not sure Mike is liking this too much. We also had Hayden's IEP which went really well for the most part. What is it about an IEP that makes you feel like a complete failure as a parent. I mean a really big ole reminder of how much I have let things slip. Say it with me ladies MOM GUILT. I will just leave it at that.

Hayden with his uncle Samuel :)

We are back on the foster parent list to start receiving calls again. Big FAT nothing with that too...lots of calls but no matches. Well we got a match and baby girl but it didn't work out. I'm learning the hard way if they don't give you a date and a time don't assume it's final. This was pretty devastating to me for so many reason's. Then I immediately berated myself for getting so excited without a date and time. I mean didn't I learn anything from the first one? So we're back to waiting patiently...yeah right. Have I told you guys I am not the most patient person when it comes to waiting. Mike tells me I have the most amazing amount of patience just not when it comes to waiting...lol

Mike has been elected to the board of the National Fragile X Foundation. I could really go on and on about how proud I am of him....gush. I am a very blessed woman. I am married to the most amazing guy who is the love of my life and the most real man I have ever know. What more could I asked for? Well besides a purse and jean budget of course.


Love,
Tina

I think this is the same face I get when a eat chocolate. A little less messy but same face.