One Year down.....

Well its been one year today since we moved to Texas. Wow and I am still here I didn't run home crying or hop on a plane when Mike was out of town. I have to admit I am really proud of myself not only did I last but I am learning to like it (a little bit)! A lot of people didn't think I was strong enough. I'm glad I can now say I am cause at first I really wasn't sure. I will say the first six months were horrible. I now know what being home sick is. It was rough, I was depressed and angry. I took a lot out on Mike and I am not very proud of that. Our marriage struggled a lot at first. Nothing puts more strain on a marriage than an unhappy wife. Luckily I have a great and very patient husband who loves me even when I am not very loveable. Wow am I blessed to have an amazing and very strong marriage. We weathered the storm together and it eventually brought us closer.

Going home made it worse I think because it was a constant reminder of what and who I was missing. Reminder of how easy it used to be to get a babysitter a free babysitter. If one couldn't do it I would just go down the list. Reminders of how easy girls nights and girl lunches and play groups and coffee nights used to be. Reminders of how much I missed my family and friends. How much I ached to and still do to see my niece and nephew every week. I hate having to watch them grow up through pictures and occasional visits. I hate even more that Hayden won't grow up the way I did with his family all around.

Ok well after reading that you are all thinking I am still depressed about living here and I'll be honest someday's I am. It's usually worse in the summer with the heat. The unbelievable melt your first layer of skin heat. Whoops okay back on track now....It's not as bad as it once was. I've made some really good friends and we have girls nights and play groups and coffee nights and even some serious shopping days. I do get to slowly get a new more colorful wardrobe because it's skin melting hot here most of the year unlike in Michigan where it was cold most of the year. Shopping is always fun. People are all very nice and our close friends treat us like family. We get invited to family holidays and birthday parties. Hayden is thriving here. I couldn't imagine a better school district for him. Mike loves work and works with a great group of people. We've found a great church that we actually attend every week and Hayden doesn't mind it too much...lol. That could be because we promise him McDonalds after if he does well. We've helped start a really great FX support group. I still talk to my sister every day on the phone and that will never change. Thank goodness for FB that way I can keep track of most of my friends and family. It helps me feel not so far away. I also love that people are willing to come here and visit too. It's so much nicer to have one on one time instead of feeling like you are pulled in every direction. Not to mention Hayden loves it soooo much better to have people over his house with his stuff in his comfort zone. Honestly I know Mike prefers it too....for a guy who travels so often...going home stresses him out so much!

Here are top 10 things I have learned since we moved to Texas.

1. Everything is bigger in Texas (except parking spots and road lanes)

2. Trees loose there leaves in the spring (what the heck is up with that????)

3. Accessorizing is a serious past time (hallelujah!!!)

4. Sweet tea is put in baby bottles (I kid you not I have seen it!)

5. The blue bonnets are gorgeous and grow wild, however, we have rattle snakes and fire ants too (why on earth would you walk your children through fields to get there pictures taken???)

6. Every truck brand has their own Texas addition (but Toyota is the only truck actually made in Texas oh, they have a Texas addition too)

7. The rodeo stinks...I mean it really smells (But man do they have great shopping at the rodeo! Who knew??)

8. They have SUPER Targets here!!! You can grocery shop, get glasses, gets your kids picture taken, get a cheesecake factory cheesecake and buy those super cute pair of shoes!!!! (where has this second home been all my life???)

9. People who don't know you wave to you and they hold conversations in the check out lines. (This I love Mike thinks its a little weird the chatting not waving part)

10. The pledge of Allegiance, the Texas flag pledge and a moment of silence (prayer) are held every morning in schools. (I still get a little teared up and I'm very proud to say I live in a state that believes this is still important)

Some of you are really disappointed that I did not mention in my top 10 the heat, or the bugs that are bigger than Baylee or anything about the food. I think the Texas food deserves a top 10 of its own....so coming soon the top ten things I've learned about Texas food addition.

I want to personally say thank you to everyone who let me cry on the phone when it was really bad in the beginning. I want to thank everyone who has come to visit. We love having you here. Any one who hasn't been but wants to please do. We'd love to have you. Thank you to all of our family and friends who understand that this move was out of necessity and not choice. Well we all know Mike wanted to come...lol. I want to thank all of my friends here in Texas who understand it has nothing to do with Texas or not liking it here when I still call Michigan home. Thank you so much to all of our friends here who have taken us in and invited us to spend holidays with you and your families it is an honor. Thank you to all of my friends here for your love and support and most of all your friendship. You have made it so much easier to be away from my family. I especially want to thank anyone who has prayed for us and our transition here. It has meant the world to us. We miss you all terribly but we're gonna be just fine here deep in the heart of Texas.

Love,
Tina

The Day I Became Everything I Ever Wanted To Be!!

Let me tell you all a little bit about the day I became all I wanted to be! It was March 18, 2005. That was the day my whole world was born. Hayden Michael Makris came into the world at 5:28pm weighing 7 lbs 9 oz and 20" long.

Let me back up just a little bit....For those of you that don't know Mike and I tried for 3 long years to get pregnant. Finally with the help of a fertility specialist and IVF we were pregnant. To say that we were excited would be an understatement! So when the day finally came for me to give birth to this little boy we just could not wait!! But in true Hayden fashion he made us WAIT. We were scheduled to have a C-section at 9am. We got a call at 7am telling us not to come till 11 and the surgery would be at 12:30 (please keep in mind that I had nothing to eat since midnight the night before). Then they called and told us not to come till 12. So we get to the hospital at 12 and he still keeps us waiting ....lets take a little side journey for a moment since we have the time...Mike's Aunt Cindy was the first to arrive. Now those of you that know Mike's Aunt Cindy know that this in itself is a miracle! Sorry Aunt Cindy hopefully that does not offend you in any way... ;) You know how much we love you! My mom, dad and sister show up at the wrong hospital. Ok back on track 1pm, 2pm, 3pm (still waiting and still starving) 4pm, they finally take me back at 5pm. I would find out later that one of the other doctors in the office had to have emergency surgery by the doctor that was delivering Hayden. So mean while I'm finally in the delivery room and then the most unbelievable thing happens...I hear a baby cry...not just any baby...my baby!! For the first time in my life I am a mommy. This little bundle of joy that we prayed so hard for and hoped so long for is finally here. My whole life all I ever wanted to be was a mom....I don't remember ever wanting to be anything else. I am a MOM (said with complete and utter awe). I am a MOM!!! People tell you all the time it's a feeling like you have never known...that too is an understatement..I don't even know how to describe that feeling..pure love, joy and every other good word you can think of. Here's one of the greatest things about delivering by C-section in a small hostpital...I was the first to hold him..yep I carried (ok well wheeled) him out of the delivery room in my arms. As far as C-sections go this is unheard of. Yep I was the first one to hold this bundle of joy. How awesome it was that the minute they put him into my arms he stopped crying. Oh how hard it was to give him up and let someone else hold him. There would however been a small riot had I not shared a little bit.

Wow 6 years!! Six seems so big - so old - so not a baby - so not my little man...well ok he'll always be my little man.

Hayden has touched so many people. You just can't help but fall in love with him. You just can't help but want to squeeze him and kiss him. You just can't help but want to give him a high five. This little boy just gets to everyone. Maybe its his beautiful eyes or his infectious grin or maybe its his little voice or his goofy little tendencies. He knows people, he understands people, and to be such a little boy he is an amazing judge of character. I get the distinct privilege and honor of being his mommy!!

So I say to this amazing little boy thank you, thank you for making me all I ever wanted to be!!

Love,
Your MOMMY!!!!!!

Wow!
Wow is all I can say about the week I'm having and how long it's taken to update this blog. Sorry about that. Some of the blogs I read are so good about it and I always think man I gotta update ours. That said today I write this blog on an amazing day (not that I don't think all days are amazing). But today is Fragile X advocacy day. What is advocacy day well to put it simply (I stole it from FB (thank you Shannon). Today, Fragile X advocates 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. I don't have to tell you how blessed I am to have such a great daddy for our precious little boy. I don't need to tell you how proud I am that I get to be his wife. God has touch our lives in so many ways. He has given us life, hope, support and has put amazing people in our lives to nurture and guide us. A good friend who has just recently come into my life reminded me of this bible verse Jeremiah 29:11 "I know the plans I have for you," declares the Lord "plans to prosper you and not to harm you, plans to give you hope and a future." This road that we are on is a long and sometimes painful but I will never again question that God is with me. I may not understand all the why's. I will someday. I promise to Look at each and every blessing I have in my life daily to be reminded of this. I am grateful for this amazing man that God put into my life. I really can say I married my best friend. I am grateful for the little boy that calls me mommy. He never ceases to amaze and humble me. Just this morning the sweetest thing happened. At 3:10 am I hear his little voice saying "mommy" "mommy" thinking it is in the monitor....my first thought was oh no we are not getting up at 3:10 in the morning. I turn to get out of bed and there he is looking at me with that sweet little face and sleep eyes. I say "what do you need buddy, you need to go back to sleep" he then climbs into my bed, get's comfy, steals one of my pillows, pulls my face to his chest and goes back to sleep. This is that small reminder that my life is so good!! Now to many of you that may be nothing. Your kids may sneak into your bed every other night. Hayden never has. He loves his own space and doesn't want to share it. So this was very rare and way special.

Today is also what is know as spread the word to end the word. I hate this word, I hate when it is used in a clinical setting and I hate it even more when it is used as slang. It's the one and probably only word that makes my stomach sour. Imagine with me if you will the little boy at the top of this page being called retarded. You don't like it do you? Now lets take it one step further and imagine being that little boy's mommy or daddy and having to hear it over and over again in an IEP. Because that is the label they gave him. Not Fragile X but mentally retarded. Imagine how sick it would make you if he was your child. Imagine what it does to Mike, myself and the many other parents who have children with special needs. Imagine what it does to us when we hear this word used in slang. I ask you as family and friends of the little boy at the top of this page to stop using that word. Today is a great day to pledge to show respect to people with intellectual disabilities, their families & friends. Take the R-word out of your vocabulary and then spread the word to end the word!
Love,
Tina

Potty Training Boot Camp!

Was a success.....Wahooo!!!

Hayden had an entire week off for Thanksgiving. For weeks I was planning on doing my own version of potty training boot camp. For years I've heard horror stories about training kids with Fragile X. How long it takes, how some twice Hayden's age are still not potty trained. I've taken classes at conferences, read books and grilled my FX friends whose kids are potty trained. I tried several times before with no luck at all. This time though I really felt like he was ready and if it was going to work I needed to make a complete commitment to it. He was waking up dry from naps. He was sometimes even dry when he would wake up in the morning. Then I started noticing his diapers would stay dry for long periods of time. We would have random success when we would occasionally sit him on the potty. We decided we were just going for it. Make the commitment and go for it and see what happens. Well Mike was gone the weekend before Thanksgiving so I was so not starting it then. Great Logic right except I started it on Monday when Mike was at work all day anyway. Well he was home at night so I wasn't doing it completely alone. I decided that if we were going to be successful I was going to have to devote all of my time to this. So basically for 5 straight days we did nothing, went nowhere and just potty trained. Can I just say how stressful and exhausting this is!! So armed with our dvd player, dry erase board (he loves to have someone write his name over and over again), and some peanut mm's (which I ate more than Hayden) I clipped a timer to my shirt and sat him every 15 minutes and would increase it if he eliminated in the potty or not.

Day 1 - Not one poo or pee made it into the potty - The clean up and laundry was constant.

Day 2 - I think we had one pee pee in the potty - again massive amount of clean up and wondering if he would ever get it and wondering if he even knew he was going?

Day 3 - First thing in the morning complete success both in the potty! Then we had serveral accidents but some success as well. (I figure nobody wants to read the words pee and poo over and over again so from here on out we will call it success)

Day 4 Success again first thing in the morning. At this point every morning we just sit him till be has multiple success in the potty! He also had success all day with only 1 accident. At this point we realized that he just wanted the dvd player all the time so we only would give it to him if he had success! Smart mommy and daddy...this worked great and made success much quicker!

You get the picture...by day 6 he was actually telling us he had to go and was very successful!

So our first true test came on Monday when he went back to school. Can I just say and I know none of you will be surprised by this....It took everything I had to not call and ask how it was going. Then when my little man walked down the hall in the the exact same outfit I put him in that morning I don't think I have ever been so proud in my life!!! I had to put my glasses on so they wouldn't see the tears. This is a complete joke cause I can't hide when I cry they knew!

Have we completely accomplished it?? Not yet!! But this is a big victory and I will take it. We'll see when we are out somewhere for long periods of time or when we get brave enough to keep him in underwear instead of a pull up for long car rides. He's not into having success in public toilets yet so that's going to be an obstacle we will have to over come.

Almost 6 years of diapers and we are done!!! (Well we still wear pull up at night)

I was watching a talk show and they had a famous lady on and she was talking about how we as mother's over praise our kids and its not healthy. Well I for one would rather over praise than under praise. To see the pride in his eyes when he accomplishes something and then looks at me and asks for a high-five..that is one of the greatest things in the world to me. So heck yea, You want a high five -here's two! You want a success song and dance here you go! You want to watch doodle bops over and over again - lets get on the bus! You want to watch Thomas the train in mommy's room - well bust my bumpers lets go!!! I am so proud of my little man and every single one of his accomplishments. He deserves praise for every one big and small because he has to work twice as hard.

This post is dedicated to all of my Fragile X mommies and daddies whose angels are not potty trained some much older than mine as well as those FX mommies and daddies who have potty trained your little ones. My prayers go out to you both! I know how difficult and frustrating it is.
Love
Tina

"D" Day

Diagnosis day...

Three years ago today the bottom fell out of my world. I was faced with my biggest fear that my little man would not just out grow the delays. That he was always going to struggle. For the first time I heard the words Fragile X. As I reflect on the feeling of that day I can replay it as if I was watching a movie...exactly what happened I can still hear the phone ring. What followed that day were some of the darkest days of my life. The fear of what the diagnosis meant was enough to make me sick. The unbelievable sadness of watching my dreams for my child slip away. The guilt because I did this. It was my gene that caused this. The selfishness that I felt knowing I may not get to celebrate things like normal parents get to. All of my questions for the future that had no answers. Will he go to kindergarten when his friends do, will he play sports, will he go to dances, will he have a girlfriend, will he graduate, will he get married, will he ever know the sheer joy of being a parent, will I ever get to be a grandparent, will he be president. My anger directed at everyone and my faith how could this happen. We waited so long and dreamed so much for this precious little boy. It all felt so cruel. Nobody could say the right things. In those few months that followed we were just surviving there was no living. What a horrible place to be. I can still remember the moment I came out of the dark...I was sitting on the floor crying as I did everyday and Hayden came to me put his hand on my cheek and smiled at me. I could see the light in his eyes and sheer love in his soul. This was my little boy that I thought at one point I might never have. There was a time when I was told I would never be a mommy. What was I doing...I sure as heck wasn't being a very good mommy that I promised him and God I would be if only given the chance. I picked myself up from the ground dusted off and looked at the son. I knew that I had it in me to be what this little angel needed me to be. I was going to prove it. To myself, to that angel boy, to the doctors that seemed to have fewer answer than I did.

Three years later....

I look at how far we have come. How far that little boy has come. How hard he works. How much I push him. I am amazed at how much he loves me. It humbles me to know that in his eyes I am his world. I look at all the joy in my life and how blessed I am. I have one of God's true miracles. I have a little boy that I kiss every morning, pick up from school every day and put to bed and pray with every night. He says he loves me. He knows I'm his mommy. I have a husband who doesn't care that I have a defective gene that might never give him another child. I have that guy who is willing to help create support groups because I said I need one. I have that guy who want to create change to make the world a better place for our little man. I have that guy who holds me when I cry and most of the time has no idea why I am crying. I have that guy who thinks I am the best mommy our little boy could ever have even though in my own mind I fall really short. I have an amazing family who looks at my little man like there is nothing wrong. I have amazing friends some of which completely get it and some that never will. What more could one woman ask for? Ok maybe a cure! I pray for that, I hope for that, I advocate for that.

Do I still have dark moments...oh yea. But they are moments now not days or months like they used to be.

To my husband who shares all of my same fears but is strong enough to put them aside and hold me. You are my home, my safe place, my best friend. I love you with everything that is inside me. To all of my friends and family who have prayed, cried, been angry and confused with me over the last three years with all my heart I love you! To my sister who has on more than one occasion bit someones head off over that last three years for saying the "wrong" things about Hayden when I was to emotional to do it. Everyone should have a sister like you! So as I wipe my eyes and make a pledge to myself and to Hayden that I will not cry again today I can tell you that our future looks bright and sunny. The journey is hard and sometime painful but I know now that it doesn't last. Grey sky's will pass and the sun will come back out...at about 2:45 every day!

From the bottom of my soul I thank all of you for the last three years of support!
Love,
Tina

Back to blocks...urrrggghhh!!

What a whirl wind July was. Back home for 10 days. What a crazy trip. We shoved so much into those 10 days. We had a wonderful time seeing as much family and friends as we could. Thank you to all of you for making the time and working around our crazy schedule. I know a lot of people got missed. We'll make up for it next time. Here in Texas it's really just us so we have a set routine, its very quiet and not a whole lot of exciting things happen. Back home it was not like that. Lots of noise, lots of people and no set routine. Poor Hayden was so overwhelmed. Some days I just wanted to cry watching him self stim and try to get his little body right. The last day was the absolute worst. He was so off and it seemed like nothing Mike or I could do to help him. Mike and I were gone much of the time so we were not there to regulate his schedule and eating. Which we have learned over the past few years is key to keeping Hayden balanced. We will do a lot of things different next time. He talks about everyone we saw often so I don't think it was to bad for him. I just think he prefers everyone to come to his house...lol So there you guy come and visit!!!

The Fragile X conference was in Detroit this time. What an awesome event. I'm proud to say we were a small part of the planning of it. Not a big part. We moved right about the time it all got really going. Sorry to our FX friends in Detroit. They did a great job and it was an amazing event. Thank you so much to our moms and my sister who volunteered we really appreciate it! This was our second conference and much less emotional and crazy then the first. We went only to the sessions that pertained to us and tried not to stretch ourselves to thin. It made a huge difference. Here is the process I went through at conference.

Day 1 - OMG!!! I'm a terrible mother and I have seriously failed my child! Why haven't we been doing all this stuff he would be a genius by now if we'd been doing all this stuff! He would at least be potty trained. What is wrong with me! We need to get him a swing for inside our house. (which we did and its not even put up yet!)

Day 2 - Whew it's not so bad we are doing okay. Lots of kids are not potty trained yet. How could one person do all that anyway. Wow these moms and dads are so amazing. Wow my husband is such a great dad and what a awesome advocate for our son. We are doing pretty good. Could we do better? Sure, but we are doing what we can. What a great opportunity it is to be in the same place with so many amazing people. The knowledge you gain is just amazing. We are going to make a clear plan and set it in motion. We are going to rally Texas to ban the "r" word and work with other families to get our message heard and Fragile X Association of South Texas up and running. We need a conference in Texas.

Day 3 - When is the party!!!!! My brain is fried and I just want to eat chocolate and dance!



It truly was so inspiring. To watch families with struggles just like mine, with struggles bigger than mine, not just manage but thrive. My FX family never ceases to amaze me. Seeing old FX friends, meeting new FX friends, and being able to see faces of some of FB FX friends was great and like I said before just inspiring! You all truly amaze and inspire me. See you in Miami!!



Several month ago I was out to dinner with two other FX mommies. We were talking about the first time our children were evaluated and they could not stack blocks. Well we all did what every good mommy does (well maybe just special needs mommies) we bought a ton of blocks and worked tirelessly on the task. And if those block were not good enough and our boys were not interested in those blocks we bought special blocks with pictures in them and lights and ones that made sounds. I swear we had about 4 different sets of blocks. Well eventually our children all learned to stack blocks. YAY boys...you rock! This is something that most parents take for granted their children just learn to stack blocks. It doesn't take months to teach this concept it just happens. So when Hayden learned to stack blocks consistently I loving tossed all these stupid blocks out the door. Not really I think I just handed them down. So imagine my horror when on his current OT evaluation(we put Hayden in private OT) it says "has difficulty with block patterns" WHAT!!!!!! So I politely ask the OT what this mean because "I know Hayden can stack blocks". She says "Hayden cannot imitate a pattern with blocks and I would get out your blocks at home and practice this with him". "You know Ms. Makris practice making bridges and patterns, with simple colored blocks not fancy ones". I did not tell her we don't have any blocks. What parent doesn't have blocks? I had 4 sets of blocks at one point for crying out loud. I did not tell her I hate blocks and every thing those silly little squares signify and how hard my child struggled just to stack 4 blocks high. Apparently 4 is some magic number in block stacking evaluations. I didn't tell her that I was thinking maybe blocks are boring and that's why he doesn't "want" to make patterns and build bridges with them. I didn't say any of this and I will do what every good mommy does go out and buy a simple set of blocks that we can make bridges and patterns with. Back to blocks again....urgghhhh!

Enough Said

HEAVEN'S VERY SPECIAL CHILD

A meeting was held quite far from Earth

It was time again for another birth.
...
Said the Angels to the Lord above – “This special child will need much love.

“His progress may be very slow

“Accomplishment he may not show.

“And he'll require extra care

“From the folks he meets down there.

“He may not run or laugh or play

“His thoughts may seem quite far away

“So many times he will be labeled

“'different,' 'helpless' and disabled.

“So, let's be careful where he's sent.

“We want his life to be content.

“Please, Lord, find the parents who

“Will do a special job for you.

“They will not realize right away

“The leading role they are asked to play.

“But with this child sent from above

“Comes stronger faith, and richer love.

“And soon they'll know the privilege given

“In caring for their gift from heaven.

“Their precious charge, so meek and mild

“Is heaven's very special child.”