2013

I swear it feels like I was just saying "wow it's December already" and now it's 2013!  Time flies when you're having fun.  I don't have a fancy recap of 2012.  I don't have the time to look back at the year and analyze it.  What's the point really?   it's over, look forward.  I will cherish the good and learn from the bad.  I tend to spend most of my energy freaking out about the future rather than freaking out about the past.  I'm real mature like that ;).   For those of you who want a little bit of a recap here you go.  Hayden turned 7!   He went to his first Nascar race and loved every minute of it.   Now he doesn't want to watch Nascar unless he goes to the track.  He's a bit spoiled.  We adopted a little girl named Cynthia and we loved every minute of it.  She turned 3 and tells me she loves me all the days!  I laughed, I cried, I was confused, I was completely certain.   Mike went duck hunting.  We lived a lot, we learned a lot, we loved a lot.  It was, as they all are a very blessed year. 

Mike refuses to make new years resolutions.  Personally I think he makes them but doesn't tell anybody about it.  He's super smart like that.   I on the other hand make them every year and blab them every year.  Unfortunately I usually don't stick with them very often.  Looking back on last years...oh wait I only look forward, that's right.  Who cares about last years resolutions.  This year my resolution is to be the best me I can be.    I'm not getting any younger and Lord knows dieting isn't getting any easier.  Forty is nipping at my heels and I want to be in the best shape of my life before that happens.  When did 40 become closer than 30?  Duh, when I turned 36.  Is it sad that I had to ask Mike how old I was going to be?  I actually thought I was I was going to be turning a year older than I actually am this year.  It must be my mature way of thinking.  I joined a gym this year and I'm not hating it.  There is usually some point during my workouts I plot to hurt the instructor or one of ladies in the front row who are way to enthusiastic.  Other than that I am doing good.  I mean I haven't ACTUALLY hurt anybody.  So that's good right?  Again it's real mature of me.

Then there is the whole time management goal. I stink at time management.  I much prefer surfing the internet over cleaning.  My life would be so much simpler if I just did things throughout the day.  Instead I sit around, tidy up, sit around, straighten up this...then the panic sets in as the clock hits 4:30.  Oh smack my husband is going to be home in less than an hour.   I must make it look like I did more than just create a loving a nurturing environment for my two children all day.  I must start dinner and mad dash pick up the house.  Come on I am not the only one...right?

Away from resolutions.......

Hayden:  we are finally getting life back on track for him.  We are getting Hayden back.  YAY!!!  He's our fun loving little man again.  He's doing much better in school and at home.  Christmas break was a turning point.  I think he needed that break.  I think he needed to be home and relaxed for a couple of weeks. 

Tomorrow our cupcake goes for a sleep study.  I don't think I have shared this on the blog, but here it goes she bangs her head at night.  I mean she really bangs her head at night.  To the point where she needs to wear a helmet and at least once a week wakes up with bruises around her eyes and nose.  It's heartbreaking.  We can't stop it no matter what we try.  Most of the specialist we've seen have said it's just something she does and "hopefully" she will outgrow it soon.  Nope didn't like that answer, so I pushed for a sleep study.  We are going to rule everything out before we just say its something she does.  More than likely it is nothing and has a lot to do with what happened before she came to us.  Now it's just a habit she can't break.  I just ask for prayers.  I'm not sure for what but pray that we get to the bottom of it and it's nothing serious.

So tomorrow I will go and "sleep" in a bed next to her.  Watch as she bangs her head and not be able to do anything about it.  She won't be able to wear her helmet because she will be hooked up to monitors.  I am so worried she is going to get hurt or bang her head to hard.

If you think about us tomorrow please say a prayer for her.

I hope everyone Is having a wonderful 2013 so far.  Here's my goofy babies over Christmas.  I think my heart just melted. 

.

Love
Tina

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