Our Fragile X Journey

Where are your pants?

2012-01-22T15:33:00.001-08:00

"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.

Hope with me

2011-12-19T20:20:00.001-08:00

Well Hayden is officially as of today in the STX-209 trial. Nope this is not an audition for a new robot on star wars. This is the drug study for Fragile X. Hayden has entered phase one as of 2pm this afternoon. He is enrolled in a double blind study. Meaning he could get the actual medication or he could get a placebo. But here is the really SUPER part after 8 weeks in the trial he will be guaranteed the real medication. Even if he didn't get it during the trial. So I shall wait patiently for 8 weeks. I just laughed as I typed that. As we were walking out of the doctor's office Mike says to me. "Now don't get your hopes up and let's not look for things that are not there". Um okay honey cause you know that's just how I am. Yeah right...I will analyze everything my little man does to see if anything is improving, changing or developing. Yep that's how I roll. Not even gonna pretend.

So we are holding on to this crazy HOPE that this will be the miracle that helps Hayden. Is it wrong of me to say this...maybe. Does it make me a bad mommy? Maybe to some people. Walk in my shoe's. Spend a day in my life...the unknown...the future. The agony of not knowing what his life will hold. Do I dwell on this...nope. I CAN"T, I WON'T. I've learned it helps nobody. Not Hayden, not my family, not my friends and especially not me. I refuse to do it (well not for very long anyway). It's taken a lot of practice but I have learned how to embrace the here and now. I again with much practice have learned how to snap myself out of a down word spiral of things I can't control. I can't control the future. I can try to shape it by making sure he has what he needs to help him succeed to the best of his ability. With great schools and therapy. I can help shape it by being his mommy, therapist, teacher, friend and did I say mommy?

So as our family heads off into this new adventure. Wait patiently with me...blah, blah, blah. Hope with me that Hayden is on the actual medication!! Yep I said it and I am not taking it back. Hope with me that this will help give back some of what the lack of protein has taken from him. Say a prayer that this IS what we so hope it will be. Say a prayer for all of the other families that are holding on to hope along with us that this medication is what we all hope it will be for our little ones.

Love,
Tina

Makris Family Vacation

2011-12-01T05:58:00.000-08:00

There are few words put together that strike horror in my mind like the words road and trip. I hate everything about road trips. I cannot understand how anybody would want to spend 20 hours in a car when you can spend 3 on a plane. I do not understand the thrill of hitting the open road and then peeing on the side of it. However, I married a man who LOVES road trips. So being the good wife that I am when he suggested we take a road trip to Nevada to see family, I came up with every possible excuse on why we shouldn't do a road trip. Not because I didn't want to see our family only because I hate road trips. Mike being the guy he is had a logical response for every excuse I had. What else can I say when he maps out our entire trip and has that kid on Christmas morning look in his eyes. Of course all you have to say is hotel to Hayden and he is game. The boy LOVES hotels. Oh crap two against one "Ok lets take a road trip"..... For weeks I've been praying that God would help me keep an open mind and help me to not get lets just say crabby like I always do when I'm in a car too long. I also prayed that I would stay awake longer than an hour so I could "enjoy" this one on one time with Mike, Hayden and Hayden's Ipad. So on Friday morning after sending Aaron (that's was our cupcakes name) off and trying so hard to hold it together for Hayden. I thought it would be best that Hayden see him go and not just come home and him be gone. At the time I had no idea if that was the right thing to do. Now I know it absolutely was the right decision. We packed the car and hit the open road with a ton of things to discuss and ponder. I spent the first hour lost in my own thoughts and trying so hard not to break down. Praying again that I would snap out it so that I could enjoy the blessing in front of me. Let's be honest the state of Texas has some boring landscape so I didn't miss much. Cow or look another cow....oh wow a whole bunch of cows....oh hey look at the cows with the big horns. Ok I promise no more bashing Texas. I really do think the cow's with the big horns are really cool and yes I know they are called longhorns.

Since most of you follow us on FB I will spare you most of our road trip details and just give you the highlights. I stopped at three cupcake shops. One was really bad but the other two were pretty good. Now I'm itching to bake some cupcakes. Nothing is better than homemade and I make some wickedly good cupcakes if I do say so myself. Mike hit 3 DDD locations. All of which were really good. Man we love food. Hayden stayed in 3 hotel rooms (well we all did). My favorite part of our entire road trip "the driving part" was seeing the Grand Canyon and sharing that with Hayden. Mike and I have been before but it still and probably always will take my breath away. God in all his glory. You just can't help but be struck by it. My least favorite part of the road trip would be Hayden having to go number two on a stretch of road with no rest stop. This would be where the story gets gross. As long as I live I hope to never hear the phrases while standing on the side of the road with a half naked child "How are we gonna do this? Never mind, he started already" or "He's pooping in his shoe" or "Tina you just stepped in it" ever again. Sorry for that disgusting turn but this is real life people.

I always love when we can spend time with family. I think living away from your family really makes you appreciate them all the more. It makes the time you do get to spend with them even more special and I cherish it so much more than I used to. We had a packed house. Seven adults and four kids. It was the fun and chaos that every holiday should be! We had a great time catching up and hanging out with everyone. We even managed to get professional family photo's done. Mike and I had a date night. That doesn't happen much and we appreciate that so much more when it does. It was a vacation of great times and great food.

I almost forgot we went to Las Vegas Motor Speedway one day. Walked on the track (we were not supposed to) ooops. Hayden LOVED it!!! I didn't even have to ask him to smile for pictures. From the moment he realized where we were the smile never left his face. Now the goal is to get him to a race in a suite so that the noise is not to loud for him. He wanted framed art work of the tracks. He really wanted Kentucky for some reason. I think he just liked saying it. We got him Las Vegas for obvious reasons.

I know for many families like ours with kids who have disabilities, family vacations are very stressful. Some families are not even able to take a vacation because it's just to much stress for their little ones. The amount of preparation and thought that has to go into a vacation is probably double what a typical family has to prepare for. Then you have to deal with the stares from people that just don't get it. The looks in the gas station when your child is touching everything and the comments from a crabby cashier who doesn't get it. No my child is not a brat he is really hyper aroused right now. Which is what I am going to get on your face if you say one more thing. Then the looks of pity when you say "my child has special needs". Really I don't need your pity...I'm really sorry you don't have an open mind and acceptance for ANY child in your heart. With all the extra work and headache I would not give up our family vacations for anything!! The bonding that takes place is just too priceless to give up. I am blessed to have a little guy that loves the car or a plane and doesn't mind new places or changes in his routine too much. We are blessed with a family that is accepting and loves Hayden with all of their hearts no matter what. I know a lot of families that don't have that and I can't even imagine what that would be like to add that stress too. Do I want to take a road trip anytime soon...nope! I do have to say this one was very fun and would have missed a lot of memories we made on road. So I am glad Mike pushed me out of my comfort zone.

I hope you all had a wonderful Thanksgiving as full of family and memories as mine was.
Love,
Tina

Going with sad........

2011-11-15T14:17:00.000-08:00

Mike just got home and confirmed what we already knew. Our little blue cupcake will be leaving us on Friday morning.

Not sure what this feeling is. I'm just going to go with sad. I'm thankful over the last few days we were able to get a lot more information than we originally had. As an Aunt I can't imagine doing anything differently than his Aunt is doing. So I get it and it makes a lot more sense now.

I wouldn't have done a thing different. I know we did exactly what we said we would do. We made a difference in a little boys life. We loved him like he was ours and was never leaving. The last eight weeks have been a blessing.

The sermon in church on Sunday was about putting others in front of yourself and how God gives us opportunity after opportunity to serve. When we as a family are ready we will open our home and our hearts to another new little cupcake.

Thank you so much for all of your prayers and hope. I pray that the transition for all of us is a smooth one.

Love,
Tina

Holding on to Hope

2011-11-10T19:12:00.000-08:00

Dearest Family & Friends -

As you know about 7 weeks ago we were placed with our little blue cupcake "Ponch". It has been an incredible 7 weeks. For those 7 weeks our prayers had been answered.

Well - we are needing some additional prayers now. Over the past few days we have learned of another family who had also submitted a home study on his behalf. They are a friend of the family and in the courts eyes are up there next to kin. Their home study was approved and barring any divine intervention "Ponch" will be placed with them.

We don't have much in the way of legal or actual rights to alter the decision that has been made. We have contacted a few people to let them know our thoughts and intentions - but it is out of our hands and in His.

Hope.....that's pretty much what we have now. Hope that our prayers are answered. It is going to be a long and difficult time till Tuesday as we wait to learn what will finally happen. We know that regardless of the outcome, our family has been blessed to have "Ponch" be part of it.

Please understand if phone calls or emails aren't returned right away. As a family, all 4 of us, we are going to push through these next few days together......and Hope.

God Bless
Mike, Tina, Hayden and "Ponch"

This is how we roll

2011-10-19T09:59:00.000-07:00

I'm so sorry I know all of you have been waiting a while for this update. Now that we have fallen into a routine I hope to get better at updating. I also wanted to make sure I could blog about certain things and not get in trouble or loose our license. For a lot of reason's to protect the children, their families and us we can't give to many details. I did find out that I can email pictures and send them on my phone as long as nobody forwards them. That was great I was able to send pics to our family.

Let me just catch you all up....

Three weeks ago we got our first placement...that sounds so uptight. It's hard to hear how "politically correct" everyone is. As you all know that's not me. That's more Mike. So I'm gonna do this my way.

Here it is my way.....

Three weeks ago we got our little blue 9 month old cupcake. He has the most amazing smile and such a sweet personality. I am in LOVE! Mike is in LOVE! Hayden is starting to be in LOVE! I'm pretty positive he loves us! When I think of what this little cupcake has been through in his short little life it makes me sick. It made me sob. Oh they warned us we would see things like this. We even heard the stories. But when you are looking at a little face with that story. It's just heartbreaking. It makes me cry for all of the little ones out there who are not as lucky, who never find a happy home. The little ones out there for whom "home" is never safe. It reminds me that this is why we are doing what we are doing. To make a difference to give these little ones security, safety and most of all love. Even if it is only for a little while. Even if we are not their forever home. Ok enough of the sad.....
I love baby feet.

Week one.....The first week was tough. Hayden wanted nothing to do with the new little cupcake that was needing HIS mommy so much. He kept telling me to "put him to sleep". Let me just clarify in the crib and not anything permanent. When I was holding him he wanted me to put him down. And boy did he back slide at school. He faked being sick so he could come home. Which I have to say I was kind of proud of him for being such a smart boy. He tried that again the next day and when it didn't work he flushed his shoes and socks down the toilet. In case you are wondering boy socks flush very nicely down an industrial toilet. Boy size 12.5 shoes... not so much. Then him wanting us to change him started. As in lay on the floor and change my underwear. I did not have a clue what to do. Thankfully that didn't go very far and we had no potty training regression.

Week two....He started to like the new little cupcake in our house but only if we were not looking. If he saw me peeking that was it back to what he was doing. On Sunday of that week he came in to tell him goodnight while I was feeding him and he gave him a kiss. Corner turned...whew!

Week three....This week started with them mimicking each other in the back seat. There is nothing cuter than two boys growling back and forth at each other. Hayden decided he was going to do all the pushing of the stroller. It has to be hilarious to watch us go into and out of the school. I try to guide the stroller. We tend to run into things. Then Hayden will say "oh bumpers". We have this routine where Hayden sits on the bench in the lobby at school while I get my visitors badge in the morning. Tuesday morning took a little longer than usual so I look out the office door to find Hayden running in circles with the stroller in the lobby. Baby cracking up, moms and dads looking horrified. Yep that's how we roll.

This would be the face that gets made in the back seat while growling at each other or fake coughing back and forth. Yep the baby makes the same face.

We are working on how we do not show affection by putting our baby brother in a head lock and how we don't make the exersaucer do wheelies or shake the car seat when he's sleeping to wake him up. But again this is how we roll.

I think one of the cutest things in the whole world is when Hayden knows the baby is up and he'll go into his room and turn on the light "Good morning A". Then I look over at a squinting eye baby (because it just went from dark to light in a second) with the biggest grin on his face. Yep brotherly love...nothing like it!

The bond between the two boys is starting to be remarkable. However it scares me half to death too. What will happen if he doesn't stay? How will Hayden take it? I'm not sure I'll be able to handle a broken hearted little boy. He calls me mama. His little face lights up when I walk in a room. Everything in his world is ok as long as he can see me. So I'm not even sure how I am going to handle my own broken heart. But we are hoping and praying that it doesn't come to that. Right now that is how we have to roll. Because there is no other way to roll. Right now it's the here and now and not next month or next week. Here and now! That's how we're gonna roll.

Thank you so much for all the amazing things you have said to encourage us. Thank you always for all your thoughts and prayers. I know that I have a few prayer warriors out there and I love you all so much.

Tina

side note: Mike is not here to edit this blog....no critiquing my grammar...you know who you are. Now I have one little boy who is taking a nap and one who is in school. I'm going to go and enjoy a little me time.

Bitter Sweet

2011-09-23T13:38:00.000-07:00

I figured I better update this. As most of you already know the little guy that our family was matched with we will not be getting. Almost two weeks of wishing, hoping and preparing. To say the least it was heartbreaking. We found out he wasn't coming home with us on Monday after visiting him for an hour and having him fall asleep on me. If I wasn't in love already I sure was when I walked out of that visit. As I was driving home I got the call that said it all. We found out about a week into it that he has a little sister. She was on life support fighting for her life and not expected to make it. Well on Monday we found out she pulled through...what a little fighter. However she is what's considered medically fragile. Our home is not licensed to accept a child that is medically fragile. The state found a family that is licensed and willing to take them both. So as the title says its very bitter sweet. We know he is where he needs to be, with his little sister in a loving home. I pray for them both that God will continue to heal that little girl and bring peace for both of them.

I'm great full he was never placed in our home and then taken away. That would have been pure torture. Make a break for the border torture.

I think Hayden thinks we are nuts. He's probably thinking I've gone off the deep end and created an imaginary friend. Because one day we were talking about and preparing for this little guy. And the next we were putting high chairs and car seat away and never said his name again. Not sure if I handled that right in hindsight. Should I have tried to explain it better? Probably...ooopps live and learn.

I want to thank all of you who posted such nice things on facebook or sent us an email or called. We really appreciate the support. Your thoughts and prayers make all the difference. For those of you who have called and asked and those of you who are just wondering. Yes we are sure we want to do this. Yes we know that we will probably face more heartache. Yes we know the next time might come close to breaking us. It's the HOPE that gets us past all of this. It's the HOPE of being a mommy and daddy again that makes the heartache worth it. It the HOPE that God has a plan for us on his time and not ours that keeps us going.

We've made a pact that the next time we go public with news we will be holding a baby in our arms in our house. So stay tuned.....

Love,
Tina

Romans 8:24-25
For in this hope we were saved. But hope that is seen is no hope at all. Who hopes for what he already has? But if we hope for what we do not yet have, we wait for it patiently.

Psalm 34:18

The LORD is close to the brokenhearted; he rescues those whose spirits are crushed.

Dry run!

2011-09-02T09:14:00.000-07:00

Yesterday we met with the adoption coordinator. What an amazing lady. So nice and you could really tell she loves her job. I believe her job is tell it like it is and stretch us as foster parents a little bit. What I mean by this is that she gave us a lot to think about and pray about. You think as a foster parent you write up your home study and that's it! They go by what is in your home study. What we said we wanted and what were were willing to take in. She presented us with several different scenario's of which we now have to consider. She pulled on our heartstrings a little bit. There are so many children who need loving homes and stability it just breaks my heart. The foster/adoption agency that we are working with has a shelter so they get children in all the time. She informed us at our lunch that if we were interested she could check and see if any of the children met our criteria. Would we be interested? We could have a child in our home probably this weekend. Hmmm let me think about this yes..yes and yes!!!! I look over at Mike who at this point looks a little pale and curb my enthusiasm slightly. So tell me more? She has to go back to the shelter and see what the status is and she will call us. We walk out of lunch I look up at Mike who looks completely shell shocked. Not pass out shocked but still shocked. We both just didn't expect this to happen so quickly. Luckily I didn't have much time to obsess about it I needed to go get Hayden so by the time she called we were just walking in the door. So there were two babies at the shelter that met our criteria. Long story short after what was about the most intense half hour of my life. We found out both babies had already been placed with other families. I don't think I even know how to describe the mix of emotions that I felt during that half hour. I don't think there has ever been a point in my life when I walked around with so much nervous energy that I didn't know what to do. I mean I literally just walked around the house with thoughts of everything I needed to do in my head but not being able to do anything. I'm glad I had that luxury poor Mike was at work in meetings. I'm guessing his mind was anywhere but at work.

So the matching has begun. What this means is that any babies/children that come through CPS or the shelter that meet our criteria (age mostly) our home study will be sent in. At that point we just wait and see if we are selected. This could be tomorrow or could be months from now. I learned from what Mike deemed our "dry run" that this process happens quickly and you don't get a lot of time to think about it. So I am currently attached to my phone. Which is a really weird feeling for me I usually never am. Just ask anyone who tries to get a hold of me at any point in the day...lol

We were also presented with the idea that there are children out there that might be slightly outside of what our criteria is but they are legally ready for adoption now. We knew this but when an actual child is described to you it makes a difference. When someone describes a little one that is ready with no legal battle, to come into our home, it really makes you think. So we are really going to be thinking a praying on this to see where we're lead. I can say the thought of holding a little baby again and having one in our home was really exciting. So I am not sure how much I am willing to stretch the criteria right now. The heartbreak might prove to be too much and we may decide to go that route but for now I think we stick with the original plan.

We've also have the opportunity to do respite care. Which is a fancy way of saying babysit. We would babysit for other foster/adoptive families. Maybe for a couple of hours or a day or even overnight. We're looking forward to this aspect of it since it's been 6 years since we had a baby in our home. This will give us a chance to get our feet wet a little bit and see if what we originally want still holds true. To see what might be the best fit for our family.

I want to once again send a sincere thank you out to you. I know there are several of you out there who are praying for us. Some of you even daily. Some of you do whenever I ask or post that prayers are needed. This means the world to us. I am praying that God sends us what is meant to be. I know that we are going to face some heartbreak and it's not going to be easy. I pray that we learn from that and use it for His glory.

Love,
Tina

Get out of Dodge

2011-08-25T13:23:00.000-07:00

For three years now I watched somewhat jealously (ok a lot jealous) all the kids that go running excitedly into their mommies arms after school. Hayden has always been a "get out of dodge" after school kid. No talking, no hugs, no nothing. Just take my back back and lets get out of here. Never cared who it was that was getting him out of there just happy someone was. Not that he doesn't like school or anything like that its just that at the end of the day he's just done and its time to go home. Well that was until this year. This year I hear momma half way down the hall. When he sees me his little face lights up and he runs to me and gives me the biggest hug. Is it bad that I have started hiding around the corner just to make it more exciting when he sees me? Nope not at all. For years I have watched and yearned for this. It's my time!! I plan to enjoy it until he stops. This morning I dropped him off in his class room and as I headed down the hall I heard his little voice from the door way "momma"....I turn around and say "yes baby"..and that same little voice says "I love you goodbye". "I love you too baby and I am so proud of you have a great day". Yes I cried a little (ok a lot). This is why I won't let him ride the bus thank you very much. I will not miss this every day. So all of you out there "Mike Makris" who think I should give up my need to control and let my little boy ride the bus...HA no way!!! Maybe next year or maybe when he goes to college.

First Day of School

This has only been our first week of school and although I am not thrilled with a few things this year - we'll save all of that for another post after I have to get all "momma bear" on the situation - for now I am letting it go. It is only the first week after all. His transition has been amazing. Generally the first week of school has always been really tough on Hayden. I thought we'd have issues this year especially because his room is new and we were on vacation the week before. I was wrong as I sometimes am. This year seems to be really coming together nicely. Not one meltdown and no tantrums getting ready or getting into the school. Way to go Hayden!!

Let me clear something up before I offend someone. I'm not anti bus at all. It's just that there is no reason for Hayden to ride the bus. I am a stay at home mom with no other kids at home so I just don't see the need. I am in no way saying kids shouldn't ride the bus or that I have something against it. Other than my husband being right that I do not like to give up control when it comes to Hayden. I know so many of my friends little guys just have a much better time transitioning to and from school with the bus. I just wanted you all to know that I am not anti bus...just anti someone else having control.

Quick update on our foster/adopt situation. I am much calmer then my last post and have everything that I can physically have ready..ready. Now we wait until that first call and go from there. My biggest fear is getting that call late at night when Mike is not home. He just calms me. I know if he is there everything will be alright. He just does that for me. I will be a freaking mess if he is not here. With no family close by to call for help it scares me half to death. I have had nightmares about it. Being woken up in the middle of the night with babies on the doorstep. Yes I know this is not how it is going to happen but tell that to my night time sub-conscience. Mark my words no big event ever goes uneventful or smooth for us. It always works out and we end up laughing about it later. I expect this will be no different. Stay tuned for the excitement.

Little tidbit, did you know where the phrase "get out of dodge" came from. The phrase was made famous by the TV show "Gunsmoke," in which villians were often commanded to "get the h@#! out of Dodge." The phrase took on its current meaning in the 1960s and 70s when teenagers began to use it in its current form.

Right now I am listening to Hayden sing "History in the making" by Darius Rucker. I have to laugh cause not only does he sing so darn cute but how appropriate for this stage of our world.

This could be one of those memories We want to hold on to, cling to, One we can’t forget The door to forever, What if this was that moment That chance worth taking, History in the making

I took the last first kiss line out cause it didn't fit our situation as much as the rest...lol. Not to diminish my last first kiss cause it was AMAZING and I will never forget it....

Love,
Tina
This is how we spent one of the last days of summer vacation!! "Gentleman start your engines". The man and little man in my life had an amazing time and I am glad they invited me to come along this time.

The calm before the storm

2011-08-06T11:43:00.000-07:00

Well here it is our license. We made it through classes, inspections, first aid, CPR, self defense, car seat safety, home study and final walk through. We did it in record time. Well we did it faster than most anyway. So now the waiting begins. Our calm before the storm.

At this moment I am calm. About 2 weeks ago I was in a complete panic. I sent Mike into the attic fully thinking I kept some of Hayden's baby clothes and necessities. When he brought down the 3 storage bins (only 3) there was a big fat NOTHING!! Ok I had a ton of blankets that I kept...oh great those are gonna be useful in TEXAS!!!! I did however keep 1 pair of jeans. When I pulled them out I instantly remembered why I kept that pair of jeans. They looked so darn cute on Hayden in his 3 month pictures. But did I keep a onsie, a sleeper, a pair of socks..NO, NO and NO. I did however keep my diaper bags...I have every intention on getting a new super cool style that they have out right now. So that's useless. I sent him back into the attic and made him look for my boppy. I know I didn't get rid of my boppy. How can I not have my boppy??? FULL BLOWN PANIC. Why on earth I was so freaked out about not having a boppy at that minute is beyond me. Hello...you do not have any clothes for this baby. Oh but it will be comfy and cozy in a boppy. It will be naked but at least I will have a boppy darn it!!

Me: Mike what are we gonna do without a boppy? Mike: Tina we'll just buy a new boppy. Me: You don't understand they are like $40 now and I know I would not have given my boppy to anybody. Mike: Tina we can afford a $40 boppy it will be fine. Me: But Hayden loved that boppy. (I have at this moment just come the realization that I do not want a new boppy I want Hayden's boppy) Mike (with a complete exasperated face) It will be ok I promise. Do you want me to go and look again. Me: YES!! Boppy found in a bag labeled "Boppy" imagine that!

And this would be why I wanted Hayden's boppy...not some new $40 boppy with no history. My Hayden's boppy. Because he LOVED it!! You can't tell by the look on his face but he LOVED it!

FULL BLOWN PANIC. We have NOTHING...no sleeper, no booties, no nothing!! So I do what I always do when I am in a panic and Mike keeps telling me it will be ok. I call my sister - Lisa to the rescue. She unlike me still has everything - sleepers, onsies, booties. Everything in all sizes!! All I have to do is bring a suitcase and fill it up when we go home.

I should tell you all that I have all the big stuff (crib, swing, high chair) but none of the little everyday stuff. So it's not like we are starting over from scratch. We just had none of the little stuff and I remember how much little stuff you need and how expensive it was going to be if we had to start over from scratch. Thank goodness I have an amazing sister and some great friends I now won't have too.

I'm a planner. I like to know what is going on, when it is going to happen and prepare before it happens. I don't have 9 months to prepare to buy and shop and plan. When you are pregnant you pretty much know at the end of 9 months you are going to have newborn! Well that couple in Texas that just had the 16 lb baby not so much. But for the most part its going to be a newborn and most new parents even know what they are going to have. Again complete planning... I like this. I however, have NO IDEA. Is it going to be a newborn or a 6 month old? Boy or girl? NO IDEA. So now all I can do is wait..I've planned and prepared as much as I possibly can. I will now enjoy the calm before the storm. That is until I have another panic attack..I'm a planner I know I will have another one.

Here's a funny story for you:
Up until this point Hayden has always said "yes" whenever we ask if he wants a baby to come to our house. Let me share another conversation with you: Me: Hayden do you want to be a big brother to a baby? Hayden: NO!! (he is even shaking his head for emphasis) Me: Why not? Hayden: Babies cry. (Have I told you all my child is a genius). What do I say to this? Yes babies do cry and ours might cry a lot! So we started reading books about being a big brother. He still says he doesn't want a baby. This has been stressing me out a little bit. Baby Ryley came to our house yesterday and I took her up to his room where he was playing and laid her on his bed and waited. Hayden looked at her and in the cutest voice I ever heard said "hi baby". My heart melted. He is going to be the BEST big brother ever. When I picked her up to come back down stairs he didn't want me to take her out of his room. He even held her and gave her a kiss! Sweetest thing EVER!
More evidence as to why I wanted this BOPPY! Just in case you needed it! Same Boppy as above only with a boy cover!

Oh I also still have that blanket!!

So we now enter the calm before the storm...the quiet before the madness...the starting point of what will eventually become the completeness of our family.
Love,
Tina

Fragile what?

2011-07-18T18:10:00.000-07:00

Fragile X Syndrome. Ever heard of it? Would you know what it was if you didn't know us? Like most people up until October of 2007 we had never heard of it either. Today is National Fragile X awareness day. Feel free to share this blog.

fragile X syndrome (FXS), the most common cause of inherited mental impairment. This impairment can range from learning disabilities to more severe cognitive or intellectual disabilities. FXS is the most common known cause of autism or "autistic-like" behaviors. Symptoms also can include characteristic physical and behavioral features and delays in speech and language development.

fragile X-associated tremor/ataxia syndrome (FXTAS), a condition which affects balance, tremor and memory in some older male and female gene carriers.

fragile X-associated primary ovarian insufficiency (FXPOI), a problem with ovarian function which can lead to infertility and early menopause in some female gene carriers.

Some gene carriers do not exhibit any of these features. To learn more about carriers click here.

Fragile X can be passed on in a family by individuals who have no apparent signs of this genetic condition. In some families a number of family members appear to be affected, whereas in other families a newly diagnosed individual may be the first family member to exhibit symptoms.

There are several things they are researching now that carriers may be more susceptible too. Such as Autoimmune disorders and Fibromyalgia.

Fragile X has changed our lives in so many ways.

Fragile X has made us stronger and better than I think we ever would have been without it.

Fragile X has made me a more loving and patient mommy than I ever thought I could be.

Fragile X makes us never take any accomplishment for granted. Stacking blocks is huge! Answering a question is a major big deal in our house. Dialing 911 (even when its inappropriate) is awesome. Peeing on the potty....amazing. Saying "momma" is still breathtaking to me. I will NEVER get tired of hearing it. Saying "I love you too"....still makes me cry.

Fragile X brought out Mike's inner advocate. It has taken him to the steps of the capitol and meetings that have now gotten us a Fragile X clinic in Texas.

Fragile X has taken us places we never would have been with people we never would have known. It will take us to Miami next summer.

Fragile X has made me a more compassionate friend.

Fragile X makes me admire and stand in awe of my little boy who struggles to accomplish the milestones that most take for granted.

Fragile X will always be a part of our lives and we will never quit praying and hoping for a cure.

Will my little boy with Fragile X syndrome ever graduate high school, drive a car, go to college or get married?....Fragile X makes me hope beyond all hope and dream beyond all dreams.

Tell someone about Fragile X syndrome today. In honor of Hayden and our family and so many others just like us that will never give up or quit dreaming the impossible.

Love,

Tina

Breathe just breathe...

2011-06-30T12:16:00.001-07:00

I think I am going to be sick. I just scheduled our home study. This is really all starting to happen and fast! It's next week on Wednesday. We don't even have a week to corroborate our stories. Just kidding we don't need that WE ROCK!! I'm just gonna keep telling myself that...over and over again. For anyone who really knows me less than a week is just perfect. That way I won't spend weeks fretting and making myself a complete wreak. Mike is right now doing a happy dance. He only has to deal with my emotional mood swings over this issue for a very short period of time. It just hit me so hard. This is more than likely going to be the last summer of just Hayden and me. Why am I crying? I wanted this. We wanted this. At the classes we've been taking I've been talking with a lot of current families who are waiting to adopt the children they are fostering. It's such a waiting game. There are some really great stories and some that just make me so sad. I'm starting to get really nervous. I think it's mostly the unknown especially how Hayden is going to take all of this. How much time is this going to take away from him. I know it's going to be hard at first until we get into a rhythm and routine. I'm expecting that. I just hope Hayden will be ok. I think its hard cause there is really no way to prepare him. When you're pregnant you have months to get a child used to the idea and somewhat give them a heads up. We don't have that luxury. I have no idea how to explain all of this in a way that he will understand. I am sure he will do great. He always does. I always freak out and he handles it beautifully. So I am hoping and praying that this is no different.

Like I said before this is all happening so fast. We were denied in May, they told us we couldn't be foster parents. Then in June we got an email saying they wanted to work with us and it's been fast tracked ever since. So after going through all of the classes and figuring out a lot of the rules. There are as you all probably know a lot that I can't blog about. Like use real names or pictures so I either have to use just an initial or come up with a nickname. I'm really bummed that I can't put any picture up on this blog or on FB. I understand completely why and it makes perfect sense. I will be able as soon as we get permission to adopt. So bear with me while I figure all of that out.

This have been one exciting summer! July seem to be as of right now a little bit of breather. Nobody visiting and nothing on the calendar for the most part. I am going to take full advantage of it. I am looking forward to a month of nothing to do and no where to go. I'm just going to breathe and enjoy the next month. Because it's gonna get crazy again in August.

Love,

Tina

PS when did I become Mom and not mommy or mama? I'm not sure I really like it! Up until this week It was only occasionally that he called me mom. Huge "sigh" my baby is growing up very FAST before my eyes.

To tell or not to tell...that is the question...

2011-06-07T13:35:00.000-07:00

I don't want to tell. Why? I learned the hard way the more people you tell the bigger the heart break because then you have to go back and tell everyone you told that you failed then relive the heartbreak over and over again. That's my experience....because in January of last year when we didn't get pregnant all I wanted was to live with the grief all by myself but I couldn't. I had to tell our family and friends who were almost as heart broken as we were that we did not get pregnant. That our prayer was not answered. That our last hope of having a baby was over. I did this over and over again. I would like to thank all our friends for understanding when I sent out an impersonal text message. I couldn't bear to repeat it one more time. I want to thank God who is patient and understanding for always being there even when I didn't think he was. Even when I cursed him and then begged him for forgiveness. Thank you for forgiveness. I want to thank those of you who prayed for peace and strength through our loss. I want to thank the little boy who was during that time and always is my sunshine. I want to thank my husband who is my rock and my home. Without all of you I'm not sure where I would be and if healing ever would have came. Ok enough about that. I think I'm stalling.....

Those of you who know Mike and I know that we NEVER fight. Ok, ok so we have disagreements but we're really good at admitting fault and apologizing so it never turns into a fight ever. I just give the silent treatment and he asks whats wrong over and over again then he says he's sorry and all is forgiven...it just works for us! ;) All kidding aside we do rarely disagree with each other. We always play to the other person's strengths. So I thought this is kind of my strength so we'll go with what I think. Well we disagreed on this one big time. I was in shock I thought he'd be with me. Nope no such luck. So here is our latest adventure of our hearts....

After praying and deliberating and deliberating and praying. Mike and I have decided that our family is not yet complete. So we prayed some more and talked some more. I said to Mike "do we tell or not?" Thinking as I said above he would agree with me when I said I don't want to tell anybody anything yet. He so did not! I got a little defensive and asked why? My wonderful husband then says "because the more family and friends that are praying for us and with us the better". Well crap what can I say to that. "Yes dear you are right". He also said "what exactly is your plan Tina?" "are we just gonna show up in Michigan with a few more kids and say oh by the way". Yes, yes that is exactly what I was thinking. Crap again...I did marry a smart man. After much talk and research and more prayers we've decided to become foster parents with the intent of adopting. There I said it. It's out!!!

I know what you are thinking...Can we do it? What are we gonna do if we have a child for a year and that child goes back to their biological parents? Do you think you can handle that? Well I don't know.....and I don't know how I will ever guard my heart so that it doesn't break in a million pieces if that does happen. I know that as a family we have so much more love to give. I know that Hayden will make an awesome big brother. I know that Mike and I are ready to be parents again. I know that there are a lot of children and babies out there who have not been loved and nurtured that need a happy and healthy home. I know their little faces break my heart. I know that we can make a difference in a child's life even if it is only for a little while.

So while there are so many unknown's and those unknown's scare us to death, I know that we are very blessed and will continue to be blessed. Besides life is a journey into the unknown anyways. I think we've done a pretty good job of navigating the unknown already.

Hayden will always be our first priority through this entire process. At anytime if it starts to effect him negatively we will reconsider. We are just about done with all of our classes and then we have our home study (YIKES). I promise to keep you posted every step of the way. So now that I've said it, I come to once again and ask you to pray for us and then pray for us some more.

Love,
Tina

"Sometimes on the way to a dream you get lost and find a better one"
This is what I have on our adoption notebook. I'm not sure who said it but I love it.

Mama Day!

2011-05-08T13:57:00.000-07:00

Thursday was Hayden's annual IEP/ARD. I don't have to tell you how stressed out I get over this day just look back through this blog. I couldn't eat or sleep all week. I HATE it! I went in completely prepared to hear all the things that I hate to hear and how far behind he is and all the accommodations they are going to have to make for him to get what we want in 1st grade. Yep first grade!! Wow when did this happen. So let me just get all the bad out of the way. I had to check a box that said I understand that Hayden will not get a diploma. That he will only get a certificate of completion. Can you say complete break down in my head. Yep I kept it under control until we got home, when Mike informed me that its only if he continues to need an IEP. Well I could be one of those mom's who's says he's always going to need an IEP and I need to get used to it, or I could be one of those mom's that says I will see my son's name on a diploma and a college application. I'm going to be that mom I will not sell him short. I will pray that some day he won't need an IEP. Someday things won't be so hard for him. Some day I won't have to worry about a 45 page IEP that lays out the plans for my son for an entire school year. Some day Hayden will get a report card. Some day I will only have to worry about what lunch box and back pack he wants. I pray that someday is very soon.

The good... I actually heard was the phrase "he is pretty much at grade level"! I also heard "he will have academic goals the same as every other 1st grader we will just need to give him the extra support he needs". I also had the special education teacher that Hayden will have next year say if we can just find ways to help Hayden with his anxiety I think he will be able to be in with the 1st grade peers most of the day and that she had no idea how advanced he really was. To which his current teacher replied "it's because of how hard his mom and dad work at home and Mrs. Makris I know you will help him all summer because that's the kind of mom you are and I wish all our mom's were more like you". Say it with me - huge teacher gift at the end of the year I mean HUGE. I know they all have to say nice things but come on it didn't have to be that nice. So big pat on the back to both Mike and I. But oh boy do I have a lot of pressure this summer and that's all I am going to say about his IEP this year.

Mother's Day weekend.....

On Friday Hayden brought home a mother's day present all wrapped up in a paper bag with pretty tissue paper sticking out of it. It took everything I had to wait until Mike came home before I opened it. I was kidding myself if I even thought for a split second that I could actually wait till Sunday. Nope it simply was not gonna happen. So to show that I had some amount of restraint I waited until Mike got home which was later than usual by the way cause he was out of town. So yeah me!! I kept asking Hayden "what's in the bag?" he would reply "burgers". Now this could be taken one of two ways either A) his favorite thing is burgers and he loves me so much that he would share his favorite thing with me or B) we get take out way to much and he thinks anything in a brown paper bag is a burger. I'm going with A. Well needless to say it was not a burger it was a "plant" (a stick with tissue paper flowers on it). When Mike asked Hayden what it was he said "Mama Day" all proud of himself. This completely melted my heart as it would any mama's. Then I thought wow that kind of plant I CANNOT kill. I cannot over water or under water this one...it can just sit pretty on the mantle and warm my heart every time I see it. Mike calls our house plant hospice "where plants go to die". Yep that's me, plant killer or am I a kind soul who watches over plants in their final hours?...however you want to look at it. I in the bottom of my heart wish I got my Papaw or Nana's green thumb. Nope both my thumbs are brown and wilted.

I am a very lucky woman I have a wonderful husband who takes very good care of me
and ALWAYS makes me feel very special on mother's day...most of my friends and family say it's spoiled but whatever...can you say jealous. If Mike asks for a list I always like to put a ton of things on it so that I really don't have any idea what I am getting. Let me make it clear I do not ever expect everything on my list I just really hate knowing what I am getting. I really like to be surprised. This year among other things I asked for an organic window herb garden. I've been researching these and felt that it would be a great next step up since I have a plant that has lasted over a year. What did I get....all of the things necessary for planting a garden. Complete with the cutest ceramic garden turtle that I have ever seen, which Hayden picked out. WHAT!!!!! Now down in the bottom of my heart this is so exciting to me. I have this fantasy of a big lush garden overflowing with fruits and vegetables. I have so many we have to share them with our friends. Back to life...back to reality... I do not grow things...I cannot grow things....I want to be good at it...but I am just not. But it warms my heart and strokes my ego that Mike has that much confidence in me. That he thinks I can do it!! Maybe he is just challenging me. Am I up for it? Well I've been researching all day what to do and it looks really good on a computer screen. It says anybody can grow tomatoes....cumbers look a little harder but we're going for it. Wish me luck I will keep you posted. Maybe I can be a plant treatment center instead of hospice for plants.

Happy Mama Day,
Love
Tina

p.s I still have not figured out how to add another picture and neither can my techy husband.

Easter 2011

2011-04-27T09:34:00.000-07:00

What a wonderful celebration of the resurrection of Jesus! I struggled a little bit this year with the Easter bunny and baskets. Don't get me wrong I started buying things for Hayden's basket months ago. So we had our baskets and eggs but never really talked about the Easter bunny. I've always known of the importance of Easter. I've always known about the sacrifice Jesus made on good Friday and his wonderful resurrection on Easter Sunday. I always knew about that. I always knew it happened I have even said in the past that Easter was not about bunnies and eggs but about Jesus. Well this year was a little different , this year my heart was telling me I really needed to make an effort to teach Hayden about this wonderful gift that he and all of us have been given. So holy week this year had a lot more meaning to me. So we read a children's book version of what the true meaning of Easter is and we prayed a little different than we normally do. That said Hayden is convinced that burgers from McDonald's were served at the last supper and that we call Jesus, daddy Jesus (because everyone is either a mommy, daddy, boy or girl). Well so you win some you lose some. What was really neat to see is how much he enjoyed reading about Jesus at bed time. I've even heard him walking around the house talking about Jesus! So as a mommy I feel like I am doing my part to raise my little man up with the knowledge of God and his awesome love. Hayden also went to big church with mommy and daddy for the first time (no Sunday school this week). He loved the music and would sing but for the most part found the sermon pretty boring. He spent a lot of the service outside with daddy watching cars. Wonder if this will create a whole new appreciation for Sunday school.

Ok well off of my mommy high. We as MOST families do colored Easter eggs. I soon realized this was the first time we colored Easter eggs with Hayden. Don't get me wrong it's not like Mike and I colored eggs without Hayden. We just have never colored eggs. So being a good mom I needed to figure out why I had failed my little boy and kept this fun from him. Well the first Easter he was just a few days old and I was not going to color Easter eggs with a 6 day old. What kind of mother does that. Last Easter we had just moved here and had not found our groove yet so I had a good excuse. The Easter's in between I Can't remember. So unfortunately it's just bad, neglectful mothering. I wanted to put a super cute picture of Hayden coloring eggs but I can't figure out why this high tech blog won't let me put more than one picture in it! I will have to consult my tech savvy husband and figure that out before the next post. If you want to see pics of Hayden coloring eggs go to facebook.

Once again this year we were invited to the Acree for Easter. We call the Acree's and their entire family our adopted family in Texas. I thank God for this adopted family and I hope they keep inviting us because we love them all and Hayden has the absolute best time! Deanna's mom reminds me so much of my mom sometimes when she is talking to me or Hayden I have to walk away cause I'm afraid I will cry. She made me the most beautiful cupcake theme wall hanging with our picture on it for my kitchen. Again I would post a pic but you know I can't figure this thing out go to FB. My mom sent Hayden the cutest plastic Easter eggs I have ever seen they were shaped like cars and trucks really cute. However I think my mom forgot we live in Texas and you really shouldn't send chocolate through the mail. I was quite smooshy...but nothing a few hours in the fridge can't fix! Easter was also the day I after 40 days was able to have chocolate again. Oh happy day!!!! So my wonderful husband got me a solid chocolate dove Easter bunny. Some day I will tell you all how much I hate cheap chocolate! Thank goodness Mike remembers this or their would have been a mommy tirade on Easter morning.

I really miss my family so much around the holidays especially. It was nice that my sister and Laila were here right before Easter so I got my family fix. My mom will be here in a few weeks (ticket booked) yay!!!!!! I don't say family is coming until that ticket is booked at that point it is okay to get excited.

Heartbreak....this morning we were getting ready for school and I asked Hayden if he was going to have a great day at school today. He thought for a few minutes his little face lit up and he asked if he was going to "see Nannie and Papa". It took everything I had not to cry. I just told him not today but Nannie would be here in few weeks. Thankfully that worked and we got in the car and went to school.

Cherish your family and spend as much time with them as you can! You will miss them when you can't or you move half way across the country. To my family back home in Michigan I love you so much and miss you terribly.

Love,
Tina

One Year down.....

2011-03-26T17:03:00.000-07:00

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!!

2011-03-18T14:23:00.000-07:00

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!!!!!!

2011-03-02T11:52:00.000-08:00

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

2010-12-01T09:32:00.000-08:00

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

2010-10-22T10:30:00.000-07:00

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!!

2010-08-12T10:31:00.000-07:00

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

2010-08-11T16:42:00.000-07:00

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.”

Warning: It's emotional....

2010-05-24T11:28:00.000-07:00

Ok so this entry has been rewritten about 6 times. It's been a crazy emotional month to say the least. The original one was pretty negative and way to emotional (even for me) so I decided to rewrite it. I know a lot of you read this to see what is going on with the Makris family since we moved so I decided to give it all to you; the good, the bad and the ugly. With a little less drama.

It started out with Mother's Day. I am very blessed to have a husband that has always made my mother's days very special and this one was no exception. Other than all my emotions..lol Mother's day was bitter sweet for me this year. For those of you that don't know we lost a baby in February. This was our last chance to be pregnant so we were really hoping for a miracle. The odds were pretty much stacked against us from the beginning but I still prayed and hoped we would get that miracle. It hit me really hard and shook my faith to the core. Some days I hate what Fragile X has done to my life. I know it has made me stronger in a lot of ways but some days its hard to find the positive. If I could take away the Fragile X I would. Does that make me a bad person...I don't know. I guess that's why we all pray for a cure. To have it all just without the messed up gene.

Then we had IEP day. This one hit really hard. For anyone who doesn't know what an IEP is it basically lays out the plans for the school year for any child who needs it. It involves sitting in a room with a bunch of school professionals telling you how your child "tested" on evaluations. People telling you how far behind your little man is. It makes me feel like a failure of a mom every year. I cried for 2 days straight. Let me just tell you that I discovered the power of Xanax. Where has this been all my life? Except for the fact that I wanted to sleep all the time it did keep the emotions in check for the most part. It was especially tough because we were told he wasn't going into kindergarten. This will be the first year he is not going to be in same grade with all the kids he's grown up with. I know its totally selfish of me but I really liked being able to say that he was in preschool with all of them and we had that in common. So now I get to here all about pre-school graduations and preparing for kindergarten. Don't get me wrong I am so happy for all of my friends and family and their kids. I celebrate with them absolutely. It's just that selfish part of me that wants that too. Now, do I think Hayden is ready for Kindergarten?..no he's not. Do I think in the back of my head somewhere I was preparing myself for this?...Absolutely! It just hurts to see it in writing. With that said he will be spending a portion of his day in Kindergarten but the majority of his day will be in PPCD. He is for sure in the best place possible for him right now. The teachers are great and the program is amazing! However, this summer will be preschool boot camp with drill sergeant mommy! It's all I know how to do...don't worry we'll have fun I promise! Ok, to all my friends reading this who are going through normal transitions with your children and school please keep telling me about it. I really do want to hear and I am really happy for all of their accomplishments.

Ok here's where it all gets better. After IEP week we decided to go to the ocean. What a great idea. I suggest anyone who has the option available use it! We were so worried because when we were in Florida he hated the ocean, wouldn't go near it. Hated the noise. Just plain out hated every minute of it. At the time it was just to overwhelming for him. Not this time he LOVED it! Loved being in the waves. The more they crashed the more he loved it. I was having mini heart attacks with how brave he was getting. What a relaxing and wonderful day. Great way to relieve stress and let the worries go. Well all that is until the ride home when Mike and I realized how fried we got. Well you really do need to pay attention to those expiration dates on the sunblock. Who knew???

My mom was in town and we celebrated her birthday. While eating cake Hayden looked right at her and said "Nanie, I love you"!! My mom and I cried like little babies. That freaked Hayden out cause he couldn't figure out why we were crying. He'll probably never say that phrase again...lol

So now its getting into routine and finding our rhythm. It feels so good to be in that place. I never knew how much being out of routine would effect me. We have pretty much from the beginning not had our own routine. We've had people staying with us or Mike has been out of town. Normal life has been well..nice. I guess I can admit that Texas is not that bad. Meeting people has really helped and having other mommies to talk to has been a God send. I will say that I cannot believe how hot it is and the humidity is disgusting. Dry heat...I was lied to for sure. Where is this dry heat? I haven't seen it yet! But I did find a biggby equivalent..oh and the best part its right next door to a really cool jewelry shop! I still miss playgroup and girls nights. Can I just tell you that not being there for my nieces graduation from preschool is killing me. We have skype, the phone and we'll be home in a little over 7 weeks.

Hayden's new phrases..."what are you doing?" He said that to me the other day and I just about fell over! "Have fun!" He says this when he say bye, see you later, have fun! It's too cute. We are now starting to get our names with a phrase like "bye mommy" or "where's daddy?" Hayden is now into Thomas the train. The other day while at the store he wanted to take "Thomas home to see Baylee"! How do you say no to that? Well I did cause have you seen how expensive that Thomas stuff is?? Anybody getting rid of Thomas the train send it our way!

Some of our dreams for Hayden seem so far away...then I look at how far he's come and think that nothing is impossible for this little man!

Thanks for dreaming with me,
Love Tina

There was a lizard on my front porch!!

2010-04-26T13:26:00.000-07:00

Yep you read it right we were visited by a really cute lizard. I say cute cause it was tiny and did not run across my foot. Otherwise it would have been a dead lizard!

My mom is in town right now!! So exciting she is helping us decorate the house. Hayden is so happy to have her here. He was so excited when he realized day two she was still here.

We finally got Hayden his swing set. Mike is in the process of putting it up. It will accommodate his therapy plat form swing and the Ikea soft swing! Yay!!! We opted for a papasan chair in his room because of renting and lack of support in the ceiling we couldn't hang up the other swing. We have just recently learned how much the boy loves trampolines. We knew he loved to jump but he would always just watch other people jump on a trampoline. Not any more!! They had one set up at the play scape store. He went right to it and started jumping all by himself. That will be our next purchase. Side note: I think I want my own papasan chair...wow is that comfy!

Texas is beautiful but it just doesn't feel like home...its been really hard to meet people. I all but had to give a blood sample to join a moms group and then found out it really wasn't for me. The kids were too young for Hayden. I guess I was pretty spoiled when on the first week of preschool in Harper Woods I met two moms and we are still friends. I would give anything to be able to be back at our play group again. I miss that socialization so much. Ohhh what I wouldn't give for a coffee night or applesbees with a friend. Ok no more talk about that..tearing up! Ok so its not all bad I have been out with Deanna for a girls day and we had a blast. Thank God for Deanna! I'll get there...right? I'm nice...I'll meet people...lol

On the up side Hayden is really doing great in school. I have no issues at all with him going in the class room. He goes to the library every week...not sure he's real quiet in there but he goes. When I pick him up from school you can hear him talking the whole way down the hall. "Mamma see Baylee!" Here are some of of Hayden's new phrases..."Dude" (yep daddy taught him that one)... "Mommy not nice"..."That is not ok"...."how about?" (He looks int he fridge and say "How about...."

XOXOXO
Tina

Texas up date!

2010-04-20T05:22:00.000-07:00

Most of you will be getting this letter in the mail with our change of address cards..yep I cheated but this pretty much sums it up for now. I did add a little bit to it so its not the same. I'll give you more next week...promise!

First of all we want to start by saying thank you so much to everyone who came to our going away party. We are truly blessed to have such wonderful family and friends. What a great night. I hope you all had a great time. We would also like to thank everyone for your love and support with our move. Your encouragement has meant the world to us.

Our first few weeks in Texas:

Hayden has had some adjustment issues. We have had to add a lot more sensory into his day. Everyday seems to be getting better the more we fall into our new routine. However the 5:30 wake up has not been fun (mostly for Mike). On the plus side we are getting naps again. His new school is great we love his teacher. The great thing about this district is that they really include special needs children with the general ed. It’s been great. Hayden attended his first pep rally and sat on the gym floor for over an hour and just watched what was going on. Next week he will be participating in preschool special Olympics. His new thing is the “freeze” game. He makes us do all these things (stand up, jump, sit) then we have to freeze. He puts his hands out and says “freeze” it’s so cute. He is talking a ton and we are getting some full sentences it’s been really exciting.

Mike: loves his new office. He comes home in a great mood everyday. He loves that you can get tacos from a trailer at midnight in the AutoZone parking lot. Every guys dream! He just replaced whitey runs with taco runs! When in Rome..

Tina: The weather has been great, a little muggy (dry heat yeah right) but great. We’re outside most days. There is so much to do. The shopping is tremendous…drool worthy really. It’s been great therapy! Bugs have not been much of a problem so far. Everyone has me so freaked out I can’t look at a fuzz without thinking it’s a bug. I do really miss biggby coffee…haven’t found anything like it here yet.

Baylee: Loves the weather and how many walks we go on now.

Zoë: Had a rough time at first. She stayed in her carrier for the first 2 days and wouldn’t come out. Then it took her a while before she would come out of the closet. She’s fine now and acting like a princess again.

Our new house is great! We are all getting a nice workout from the stairs!

The coolest thing in San Antonio (besides the Makris family of course) is by far Morgan’s Wonderland! Morgan’s Wonderland is a special needs amusement park, the only one in the world. We took Hayden and he loved it! His favorite things were the slides with rollers, sensory room and water guns. Everything is designed with Children with Special Needs in mind. Everything is wheel chair accessible and they only allow so many people into the park so that it is not too overwhelming. The best part is Hayden gets in free and anybody who comes with him only pays $5!

Thank you for all of your calls, emails, FB posts, texts, and cards over the last few weeks. They mean a lot to us and we appreciate them.
From the bottom of our hearts we love and miss everyone so much! We’ll see you in July! Feel free to come and stay any time, we’ve got the room!

Tina

Changing of the Guard!!

2010-02-11T12:30:00.000-08:00

Hello Everyone!

I have officially taken over this blog. Sorry you will no longer get the matter of fact, eloquent, political posts you once got with Mike. I am much less proper and way more emotional than Mike. But hopefully I can find more time to update this more often.

So to update you all. We now have a house in San Antonio! We actually have a moving date. Well here's to hoping this was all just a dream and would go away. Can I just say that I am so scared to leave the support of my friends and family not to mention clean 3.5 bathrooms! I am however looking forward to the weather and new opportunities for our family. Praying that everyone comes to visit and I will probably be counting down the days until July when we fly back home.

When you have a child with special needs it is scary to lose your support network. I have the greatest family and some awesome friends. Its so nice to just make a call and get a break if I need it or have a friend to just hang out with and get away for an evening. I truly believe sometimes getting away makes me a better mom. Time to refresh and just get a little girl talk and of course dessert is usually involved. Now I know I will make new friends and establish a new support network we have already met some really nice people. It's just really hard to leave your mom and your sister when you are a woman. Mike and Hayden are probably going to breeze through this transition its me that's going to have the hard time....lol

Any way hope you don't mind the changing of the guard to much!!

Love,
Tina

October Update

2009-10-23T07:31:00.000-07:00

It's been a long while since I've posted on this blog - and oh how things have changed in our lives. I truely can't believe that it's nearing the end of October. The year has just flown by.

Yesterday was October 22nd - X-Day........exactly two years ago we received my sons diagnosis of Fragile X Syndrome.

I sat down yesterday a bit and just reflected on what the last 2 years has meant. I still remember that frantic first few hours of finding out about Fragile X and "googling" it and just the shock and fear I felt. I still remember those first few months just not knowing what to do and just walking around day after day lost and confused.

We've come along way since then. Attended our first Fragile X International Conference, got involved with the Fragile X Association of Michigan, became a board member of FXAM and now a member of the Public Policy Committee for NFXF. Assisting in hosting the 12th International Conference in Dearborn, Michigan and attended my first FX Advocacy Day this year. Fragile X is a part of our lives - and we are not going to let it be a negative. We are going to fight everyday not just for our son but for all the children and adults who are facing this disease.

Everyday I am inspired. Hayden has come so far this year. In January we were really struggling to get even a few words - and today, he is just constantly talking. I can't tell you how many times a tear has come to my eye when I've heard a new word. His school, private speech classes, and therapy camps were just unbelievable this year. We still have some speech struggles - certain letters or sounds - but to hear your child say Momma & Dadda......I just can't think of a better sound.

Just a few weeks ago we went to Chicago to meet with a FX specialist - Dr Berry-Kravitz. The short of the appointment is that Hayden is developing right along the same lines as most children with Fragile X. He is ahead in some areas and behind in others but all-in-all she doesn't see any major areas to be concerned about. We also recently were at a fund raiser with Dr Paul Hagerman - another expert in FX - and he was very hopefuly on new therapies and drugs in the next 3 - 5 years. These are my heroes - these are the people who have dedicated their lives and research to helping others.

The biggest change in our lives, however, is going to happen at the end of March 2010. That is when we will be leaving Michigan and moving to San Antonio, Texas. As part of some changes at my company I was asked if I would be willing to relocate. After much (MUCH) discussion and consideration - we both thought for the betterment of my career, the potential opportunity for our family, and lets face it, here in Michigan, the opportunity to keep my job - this was probably something we should do. We've been to SA once to see the town, look at houses, see some schools - and we were very impressed. It's a beautiful place and has lots to offer not just for me and Tina, but for Hayden too.

We still have some things to work out - final place to live, school, stuff like that. Heading down there another time to look around again and try to finalize some things. One place that we found that is amazing is a theme park that is being built called Morgans Wonderland. This is the first theme park strictly dedicated to individuals with disabilities. Its motto is "A special place for our special friends". Opens early 2010 - so how perfect is that.

So needless to say the next 8 months or so is going to be crazy busy. Holidays, travel, and just the day-to day business that we already have. But I can't complain - life has blessed me with a beautiful and wonderful wife who is just the most amazing person I've ever met. With a son who I just can't put into words how much I love and who everyday inspires me.

Life is good.

God Bless.

Fragile X Awareness Day

2009-07-22T12:55:00.000-07:00

Today, July 22nd 2009, is Fragile X Awareness Day.

If you read this blog or know me - you know how Fragile X has affected my family. But it's just not my family - it's hundreds of thousands around this great country of ours.

Please visit fragilex.org or fxam.org to learn more about Fragile X and how you can help support research to find a cure.

Tina, Hayden, and I are blessed with the most amazing family and friends. In the past, almost two years, since we received our diagnosis the support and prayers we received is absolutely amazing.

We've learned alot about what Fragile X is, why it has affected us, what we can do to treat it - and I think back and remember asking myself - why me? why us? I know someday I will get that answer. I also know that I need to make the best of everything that comes my (our) way - and I realize everyday how amazing of a blessing Hayden has been into my life.

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.

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. But 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.

On National Fragile X Awareness day I have had so many emotions run through me. I really can't explain any of them. I'm actually having a hard time finishing this post - which if you know me, I'm not one to shy away from talking or writing.............

............. God Bless !

FXAM.ORG

2009-07-09T20:24:00.000-07:00

Just finished most of the upgrades and updates to the NEW Fragile X Association of Michigan website. Check it out.

www.fxam.org

(still working on getting our home computer fixed - hopefully in the next week or two)

God Bless

Computer Crash

2009-06-30T10:53:00.000-07:00

Hello all - I know it's been a while for updates...and it might be a little longer. Our computer has crashed and we are trying to save it AND all our pictures. So it might still be a little while longer for an update.

Hope you all are doing well - and have a wonderful 4th of July holiday weekend.

Be safe & God Bless

Tie A Yellow Ribbon

2009-05-12T20:44:00.000-07:00

On May 11th a very good friend of mine - and my brother in spirit - left and went to defend our countries freedom and help those who have been liberated.

I have never experienced saying goodbye to someone like that. To go off and do that is a bravery and a courage I don't know if I will ever know. I'm a truly humbled.

So please - so a prayer for my brother and for all of our troops who are out there for us.

God Bless

May 2009 Update

2009-05-12T20:15:00.000-07:00

Bad, bad blogger. No update for over a month. It has been a crazy couple months with lots of business travel and busy weekends. But there is a lot to catch up on....so here goes.

We have been making tons of progress in the speech and language areas. His letter recognition gets better and better, and he knows all his numbers and most of his colors. Words (and attempts at words) are coming more and more frequent. He will help us say the ABC's...if we say "A" he says "B" then we say "C" and he says "D"...and so on. Maybe not perfect everytime - but we are just making huge gains.

He's also pretty good with the number 3. If we ever have to tell him something more than twice - like let go of the dogs tail - we tell him once, and then say "ok, Hayden...1, 2, ....." and he will pipe in with "3". How do you discipline when it's so cute. He also gets so excited whenever he does something right as far as letters and numbers go - and when we say "good job" he just gets the biggest smile and starts clapping. What an awesome feeling.

Just this week we also had another amazing thing happen. Hayden's OT at school sent us a note home that said he wrote the first letter of his name - an "H" (duh, right?). She wrote it down - and he took a pencil and did it himself. I read the note and got a tear in my eye. How awesome is that.

Soccer started again. Hayden is playing in his second season. First day wasn't all that great - we maybe had a good 15 minutes of actual playing time....he was just so exhausted by the time soccer started. He seems to like getting up no later than 6:30am everyday.

We missed the second day, but on the third day we got a helper that I think is really going to be good for Hayden. The whole soccer program is for children with special needs, and the get kids from the community to volunteer and help out.

Well on this day we got a volunteer who spent the entire hour with Hayden. When he didn't want to actually kick the ball or learn to dribble - his helper would just sit on the sidelines and talk and play with him, tickle him, do just about whatever Hayden wanted. This kid had such patience and just seemed to enjoy hanging out with Hayden. It was great because I actually got to sit back and watch while he played. It was really great having that feeling of watching your kid play sports - even if it was just sitting on the sideline watching the other kids play. We will for sure ask for this helper each weekend.

As mentioned in a previous post we had some worries when it came to the ECDD program in our school district. How such great things can be accomplished when the public pulls together. For over a month weekly emails, phone calls, and meetings with school board members and school administrators resulted in a victory. The district eventually realized they couldn't get rid of special ed programs - but they had also wanted to get rid of the special ed director. Well at the April meeting, the board did not even make a motion to discuss the possible termination of the special ed director. With so much concern from the public - the board acted in our interest and I think for the betterment of the district. We still have some financial issues in our district - but I think they can be worked out.

That's all the updates on Hayden for now. I do want to say a little note for my Buppa (grandpa) who we lost on May 2nd. He had been sick for sometime and had been back and forth between a hospital and nursing home for the better part of the last 4 months. I miss you and love you Buppa...say hi to Nana for me.

God Bless

The Outlaw Organic Farming Act

2009-04-07T06:53:00.000-07:00

Family & Friends ~

I've recently heard about a bill in the House (HR875) and Senate (S425) called the Food Safety Modernization Act. As part of this bill, which is supported by the food chemical lobbyists, the use of fertilizers and pesticides will be required to "protect" all food - including organic food. Isn't that the reason many people choose organic food, because it doesn't have fertilizers and pesticides?

When we switched Hayden to organic food - we saw a change in him within weeks. We started getting more sounds and now he is starting to talk. Is it all because of organic - no - his teachers and the hard work Tina put's in is part as well - but we noticed a change in the beginning when we switched even before the intense therapy and we believe the organic food is helping the process further along.

So I urge you to contact your representatives in Congress and ask them to not support this bill. I fear that there is little opposition to this bill in Congress due to the current numbers, and is being led by the same party in power - and we've heard very little about this bill which they are trying to put through with little fanfare.

Thank you and God Bless
Mike

http://www.govtrack.us/congress/billtext.xpd?bill=h111-875

https://writerep.house.gov/writerep/welcome.shtml

http://www.senate.gov/general/contact_information/senators_cfm.cfm

http://blog.alextiller.com/BlogRetrieve.aspx?BlogID=2729&PostID=58102

http://www.leavemyfoodalone.org/Default.aspx

Harper Woods School District Planning To Cut All Special Education Programs

2009-03-22T13:54:00.000-07:00

As you may have read from a previous post - this was the first year Harper Woods had an ECDD class. Well - they seem to think that it is a good idea to cancel all Special Education services in the district - which included ECDD, Categorical Classrooms, staff, etc. I'm thinking the Business Manager, Interim Superintendent (which they are on like their 3rd or 4th), and Board of Education are a bunch of idiots and are discriminating against our kids who have special needs. I've not heard of any other programs they want to cut to save money in the district.

If anyone has any good ideas on how to fight this - feel free to email me - I'm lookin' for a good fight !!

Happy Birthday

2009-03-22T13:42:00.000-07:00

Little late on this post - but Hayden turned 4 years old on March 18th. Wow - 4 years old - the time is just flying.

We went to Pump It Up for his birthday party the weekend before.

Unfortunately he got sick on his actual birthday and has been fighting a cold ever since.

Fragile X Advocacy Day 2009

2009-03-05T18:46:00.000-08:00

Fragile X Advocacy day on Capitol Hill was one of the most amazing experiences of my life! We had a day of training on the 3rd and then spent all day on the 4th meeting with our state representatives to advocate our agenda. Over 130 people from 35 states attended - the biggest advocacy day yet.

What was even more amazing was he support we received from freshman Representative Harper (R-Miss.). Representative Harper is the first person in Congress to have a child with Fragile X Syndrome. He is a remarkable advocate on Capitol Hill for our cause. Knowing we were all coming, he arranged to give us a private tour on the House Floor. This is the same place the President address joint sessions of congress and gives the State of the Union Address. All 130 of us gathered on the House Floor while Rep. Harper and Senator Delahunt (another champion of FX) spoke to us. After that we got a tour of some of the other rooms in the Capitol. It was an amazing experience.

After the tour we went on to our meetings with our Senators & Representatives. The Chair of Public Policy for the NFXF is from Michigan and it was great going to the meetings with him and learning. I always was disappointed I never got into politics, but now I've found my way - and what better cause could it be for.

What was also amazing was all the great people in the Fragile X community I met. We went out in groups for dinner Tuesday night and it was great being able to talk to people in other states. I was even able to speak with some of the leaders of the NFXF. I learned so much, not just about politics and the process, but also so much more about Fragile X and what is being done.

It was truely an amazing experience - and one I will be doing every year for the rest of my life.

I put a link to Congressman Harper's website that his Public Service Announcement, speech on the House Floor, and other information on the things he's doing for Fragile X.

I encourage anyone who can do it to attend an advocacy day - it is so empowering and life changing. Here is a quote that really means alot more to me now:

Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has. ~ Margaret Mead

God Bless.

Surfs Up Dude

2009-02-26T18:02:00.000-08:00

Seems as if the days & days of playing Chuzzle with Mommy and Daddy have paid off. Hayden is becoming pretty good on the computer. He plays Chuzzle by himself and can surf Playhouse Disney looking for Little Einstein games. I think maybe he could give Papou some tips now !

Now I Know My ABC's

2009-02-21T05:41:00.001-08:00

Can't believe it's been so long since I updated. The time is just flying by...can't believe it's nearly the end of February.

We've had some amazing progress over the last few weeks. Hayden is saying (and trying to say) so many new words. It's funny...his speech therapist must touch his chin when she's trying to get him to say a sound...so sometimes when he talks he grabs his chin. Same thing happened when we first tried to teach him to nod his head yes....we would grab his head to show him the motion, so when he started on his own he would grab his head.

But the biggest new thing is he knows his ABC's !! He can't say them - but he can point to each one of them. He has a Little Einstein toy laptop and one of the games is matching the uppercase letter to the lowercase letter. So the game will show lower case "n" and say "find uppercase N" - and he is pretty much right everytime. We have the magnetic letters on the fridge - we say point to "H" and darn near everytime he points to the right one. He's been fascinated with letters lately - he points to them on shirts, in books, everywhere. It's really amazing and an awesome achievement.

This is a picture of Hayden and his "girlfriend" at school Emma. They've become good friends and on Valentine's day we took them to Chuck-E-Cheese. How romantic. His favorite game is Skeeball.

I'll probably have some more updates early next month. It's Fragile X Advocacy Day in Washington D.C. on March 3rd/4th and I'll be traveling to D.C. to participate in my first one. I very excited and looking forward to the experience.

God Bless !

FXAM Board of Directors

2009-01-10T17:24:00.000-08:00

Been a busy day of posting to my blog.

I've just been notified that I have been chosen to sit on the Board of Directors of the Fragile X Association of Michigan as the Recording Secretary.

This is such a great honor. I'm very excited to be part of this group and look forward to doing whatever I can to help the organization and to make the 2010 International Conference a success.

P.S. This means hitting up alot of people for help and donations......so you have been forewarned !!!!

God Bless

Say Dada !

2009-01-10T06:18:00.000-08:00

We have had such amazing progress in speech the past few weeks. Hayden just continues to try and talk and say so many words. Dada, Moma, Bebe (for Baylee our dog), yes, please, up, and so many other words he is trying to say. It's been truely amazing and wonderful to hear. We sit in the living room sometimes and just listen to him rattle things off - it's great.

Great strides in his physical strength too - walking up steps without holding onto anything. Seems like small stuff, but is a great accomplishment.

Alot of progress over the last few weeks - it's really great.

God Bless

Read My Lips And Puff Me Bud

2009-01-10T06:14:00.000-08:00

You are probably thinking - what the heck does that mean. Well - on New Years Day my family lost a great man....my Uncle Nick. He was a big guy with a big bark - but was a teddy bear at heart. I have so many great memories of my uncle. The times we shared going to Rocky movies, overnight trips to casino's in Mid Michigan, how he loved the NFL Draft and I would call him every draft day to see how the Lions did, and his famous saying "Read My Lips And Puff Me Bud".

Love you and Miss you Unc...God Speed.

Happy New Year !

2008-12-31T07:20:00.000-08:00

Well - tonight is the annual party at the Makris house. Definitely won't be posting any pics up from tonight :)

Hope you all have had a wonderful holiday season - and have a Safe and Happy New Year !

God Bless

Merry Christmas

2008-12-24T19:16:00.000-08:00

Another Christmas Eve and Day has come. Christmas is my favorite time of year. I love the act of giving. I love to see my sons eyes when he plays with something he really likes, or when I give my wife something she didn't expect.

During this holiday I am blessed with a wonderful and amazing wife, a son who words can't say how much I love him, and a loving family.

May you and yours have a wonderful Christmas.

God Bless.

Speech to the Board of Education

2008-12-16T19:10:00.000-08:00

Tonite - as my wife says - I made my first step into becoming active in local politics. Well not really - all I did was speak in front of our local Board of Education.

At the last meeting the President of the board said something I really didn't like - so at the meeting this evening I just got up and spoke about it. Nothing major - just letting them know who I am and talking about the comment. More than anything I think it made them know who I am and that I will be vocal about things - especially when it comes to my childs education.

No major new updates to report. Hayden has been feeling under the weather for what seems like 2 months. He was on the "yummy pink stuff" for a week and it seemed to help - but the runny nose is back and a cough now. The joy of 12 toddlers running around a class room all with passing germs to each other.

This time of year is always crazy with all the Christmas parties and family gatherings. I'm thinking Hawaii sound really good right about now !!

Probably wont have too many updates for a couple weeks because of the holidays - but I'll try and maybe post some Christmas pictures and stuff.

God Bless everyone - and have a great Christmas and New Years !!!

Facebook!

2008-12-01T10:54:00.000-08:00

As if having a blog didn't make me cool enough - I'm now on Facebook! and so is my wife. So if you are too - look us up.

Always thought I was "too old" for Facebook! - but it's actually really cool. I've connected with alot of family and high school friends. There's also a Fragile X connection as part of the "my causes" application - so I thought that was cool.

Hope you had a great Thanksgiving !! Only 24 shopping days till Christmas !!

God Bless

Happy Thanksgiving !

2008-11-27T06:33:00.001-08:00

On this day of Thanksgiving - I have many things to be thankful for: The Lord and all of His blessings, My wife and her love and support, my son and all the wonderful things he brings into my life, my job and what it provides for us, my family and their love and support, and the troops who everyday whether home or abroad put their lives on the line so that I may be safe and live in such a free country.

We live in some challenging times for our country and the world - yet we all need to take a step back today and really analyze what we are thankful for. I'm sure all the things we can be thankful for far outweigh the negatives or challenges in our life.

Happy Thanksgiving to you and yours.

God Bless

First Snow and other Stuff

2008-11-16T17:07:00.001-08:00

Wow - they said flurries today - but we probably got a couple inches. Didn't really stick to the cement - but the grass is pretty covered. Hayden has been fighting a cold for the past few weeks - so we didn't go outside and play in it.

Had our first parent-teacher conference last week. Everything seems to be going good - still have alot of work to do on his IEP goals. Hayden has become friends with a little girl in his class who missed a few days - and the teacher said he seemed to be looking for her during the week. It's really good that he's making friends and his social skills are really developing.

We've been pretty lax with the organic diet lately and have noticed a regression in his speech. So we were really dilligent the past week and have seen a noticeable improvement. We both need to be much stronger when it comes to making sure he eats organic. It really seems to help.

Tina and one of her friends in Fragile X of Michigan are having a fundraiser to raise money for the FX Conference in 2010. Take a look at the flyer in the Lia Sophia link in my favorites. Leave a message or send an email for more info. The event is Nov 22nd.

Speaking of fundraisers - we met a guy who owns a bar and does Texas Hold'em Fundraiser tournaments for non-profits. I think I am going to do one for FX - I'll post more info here when I know more - but it looks pretty cool.

Well - it's opening of deer rifle season - and while I didn't go up this weekend - I'll be heading up this Thursday nite. Wish me luck. Venison is for sure as organic as you can get. Know I can really say I'm hunting to feed my family.

Take care - God Bless.

November Update (About Time !!)

2008-11-02T18:25:00.000-08:00

To all my loyal readers - my apologies. Been a crazy couple months - I can't believe it's already November. I love this time of year. I've been out hunting once already and am looking forward to another weekend spent in the woods for the opening of rifle season. Thanksgiving will soon be here - which starts the Christmas holiday season. Wow - another year is about to pass.

Well alot has gone on since the past update - so I will try to fit it all in and not get too wordy.

School

I think Hayden has suprised us both with how well he has adapted to going to school. But I think the routine of everyday has been really good. We have seen great progress with his social skills and just his attempts to play with children which he didn't really do before. He gets speech throughout the week and also thankfully qualified for OT and PT as well - which he gets once a week each. We haven't seen a whole lot of progress on the speech side - but we know this takes time. You can tell sometimes he really tries. He has a lot of sounds and we know he says some things to us sometimes where he knows what it is - but we have no clue. But with the signs we have taught him and just knowing Hayden and his personality and routines - we can communicate pretty well with him - and that is really great.

Hayden went on his first field trip this year. Early in October the entire pre-school class (regular and special ed) went to an apple orchard. It was a pretty long day - so towards the end Hayden started to fizzle out - but overall I think he had a great time. Here are some pictures

I think he really likes riding the bus. He was also in our cities Homecoming Parade and got to ride the bus with daddy.

So all in all - school is going fairly well. Tina gets some "personal" time each day and I think it's really great for her to have that time. I get to go to work each day - so being a stay-at-home mom - that time is really beneficial.

Soccer

Through some friends of ours we heard about a soccer team in Grosse Pointe for children with special needs. I was a little skeptical at first thinking he was kinda young and probably wouldn't do all that well - but as usual Tina was right - so we signed him up. I don't think he really understood the whole concept - maybe thought we were just out at a park playing - and kicking the ball wasn't something he really wanted to do. But with some bribery (toys and food) he and I would kick the ball for about 20-30 minutes of the time we were there. After the season was over they had a little halloween party and all the kids go trophies. We will definitely do it again next year - it was great to get out like that.

Playhouse Disney

Hayden loves the Disney Channel - The Little Einsteins, Pooh, Mickey Mouse, Handy Manny, The Doodlebops - all that stuff. We saw Playhouse Disney in May when we went to Florida, but a different production of it came to The Palace of Auburn Hills near where we live. I got some tickets for us and also for my niece and her parents. The kids had a great time - and so did the parents. We were in a suite - so it was a really comfortable situation. Not sure how it would have been on the main floor. It was really great to watch the kids faces as the characters came out. I was kind of bummed that all the characters didn't have costumes - for example the Little Einstein's were actual people while Pooh and Mickey were in costumes. I think Hayden would have related better if the LE's were in costumes - but he still really enjoyed it.

Other Stuff

Tina and I are still very involved in the Fragile X Association of Michigan, and thusly that National Fragile X Foundation. We are blessed to have the 12th International Conference in 2010 right here in Michigan. We are now actively in the planning stages of that. I'm hoping to become more involved as time goes on with the foundation and I'm planning on traveling to Washington D.C. in March for advocacy day. There will be more info on these activities as time goes on.

All things considered - things are pretty good. Most of our days are good - but we still get those days here and there that are very challenging. On October 22nd it was 1 year since we got our diagnosis. I think back to that day and how devastated we were. I know personally my thoughts were "he'll never play sports, he'll never ride a bike, he'll never go to school, he'll never....whatever"..........just all kinds of negative thoughts - actually, very selfish thoughts because they were all about things I wanted my child to do that I wouldn't be able to do with him. He played soccer this past year, we've been working on the bike thing, he goes to school, he has friends, he loves his toys.......all kinds of wonderful things I probably would have taken for granted - but because of Hayden, he makes each thing we do, each game we play, each day we wake up better than I ever imagined it could have been.

In two days from this post - we as Americans get to do one of the most precious things in our great democracy - we get to vote. No matter your political affiliation - please, please get out and vote. Much blood has been spilled to defend these freedoms we have - and God Bless all those who protect us and help us protect those rights. Those men and women have a courage I can never realize. So please - get out and vote.

I promise to update more often.

God Bless

Still Here

2008-09-29T16:57:00.001-07:00

Sorry - been a busy couple weeks and I haven't been able to update. I need to get in a more regular update schedule.

I will work on some new posts this weekend.

Thanks for Reading.

God Bless

Some Shout-outs

2008-09-08T12:17:00.000-07:00

Couple things I haven't mentioned - so I wanted to catch up on them.

First - both my sister and my sister-in-law had their babies - ON THE SAME DAY !! I got the call in the morning on my way to work that my s-i-l went into labor - and Evan Wayne was born the morning of August 26th. Then that evening I got a message from my father in Las Vegas that my sister had her baby - Isabella, Izzy for short.

They are both beautiful and we are so happy to be Aunts & Uncles again - 3 from my sister (2 boys / 1 girl) and 2 from my sister-in-law (1 boy/1 girl).

Second - I want to give a big shout out to my good friends Joe and Dave, and Dave's buddy Chris - as well as each one of their wives. FXAM had their annual golf outing this past weekend and these guys and gals all supported us by joining us in the golf outing and in the evening for dinner. Their support for us and for Hayden has been wonderful - and we thank them for helping FXAM in our mission to raise money for support and research. If I remember correct, the outing raised over $10,000 for FXAM - which is wonderful.

It was a perfect day for golf and the grilled steak dinner was great. We then all headed to a new local watering hole and enjoyed some music and dancing.

I think that's all I forgot.........for now :)

God Bless

2008 Presidential Election

2008-09-08T10:01:00.000-07:00

"To the families of special-needs children all across this country, I have a message: For years, you sought to make America a more welcoming place for your sons and daughters. I pledge to you that if we are elected, you will have a friend and advocate in the White House." - Sarah Palin

And with that - I was officially supporting the McCain / Palin ticket. It's very well known in my family I am a Republican. I have been fighting with myself this year because I wasn't really big on McCain - yea, I was probably going to vote for him - but I didn't have a lot of confidence. I was hoping he would put Romney on the ticket - I supported him in the primaries and would have felt better with him on the ticket.

Well - to the entire nations suprise McCain picked Sarah Palin. Within hours we knew all about her family and I read about her most recent son Trig who had Downs Syndrome. My first comment to my wife was - someone in the White House with a soft spot for kids with special needs - what a no brainer vote this is going to be. She wasn't so sure at first - as a lot of people are saying - how can she raise a special needs child and be away so much being VP. But when she uttered those words above during her acceptance speech - wow - I was blown away.

Since when have children with special needs been put in such a national spotlight? How great for the entire special needs community can a VP - a woman no less - with a special needs child be for this country? There was a really good article in USA Today today (that sounds funny) and I'm linking it below. [Don't know if I can - I'm still learning the whole blogosphere sharing and linking thing - so I will say it is being linked with no malicious intent so if I've done something wrong I'm sorry and will correct immediately if contacted.]

http://www.usatoday.com/news/health/2008-09-07-specialneeds_N.htm

So I will be an unabashed supported of McCain / Palin for the next 2 months. Not only is it the party that empodies my ideals - but it now has a candidate that embodies my new life passion - the special needs community.

It's strange - when Hayden was diagnosed - it was the worst time in our lives. In these past months since October 2007 I've become closer with God, I've began meeting wonderful people, I've gained this passion for a cause higher than myself in hopes to better Hayden's life and the lives of others, and now Palin has this connection with my new passion. It's been a strange year of new things in my life - but my life has never been so fulfilling. I don't know if I'm making sense but I just keep getting these signs and I know there was a reason we were chosen for this task - and I'm going to do everything I can to not ignore this calling.

God Bless - Mike

First Day of School

2008-09-04T17:39:00.001-07:00

Our little guy is now a pre-schooler. Today was his first day - and it was a long journey to get him here.

It was early this year that we had our first meeting with the new Special Education Director for our school district. Our district had never had an ECDD (Early Childhoold Developmental Delay) program and the new director had come from a district that ran a pretty successful one - so we felt confident he knew what one should look like - just weren't sure how much the district would cooperate.

At first our district was about a year away from having a program - so we would have to get into an adjoining districts program if we wanted our son to start in September. The other district is known for being very tough and selective on who it "allows" in their program so we had to go through many different hoops and paperwork. We were told our son who is not Autistic needed to be listed as ASD in order to qualify for this program. We toured the ASD class room and were not sure that we wanted our son in that program. Not because these were Autistic kids and we didn't want him near them -not at all - but we felt Hayden would not be challenged enough in the class setting and he would be much better in the CI (cognitively impaired) room.

After touring the classroom and deciding to go CI - I met with our districts director only to find out that they would indeed by having their own ECDD program and the school board had given approval to start in September. This was great news because the school would be only 6 houses away from us.

In order to start this program the district needed a teacher - and the day we got back from the National FX Conference there was a message on our phone asking Tina to be one of the people on the panel to interview potential candidates. I feel we have developed a pretty good working relationship with the new director and he values our opinions and our desires for Haydens success. The selection process was really good and a teacher was hired.

Next - the three most difficult letters for special ed parents - the IEP (individual education plan). It is federal law that all special ed children have an IEP - where the parents and a team of educators and therapists put together programs and education plans for the child. We've heard many stories about parents struggles to get services and proper goals for their children - and we armed ourself with as much knowledge and prepared as much as we could for our time.

We laid out a few nights before what our goals were and what we wanted and also put together a "get to know Hayden" packet that had some of his traits, favorite things, and just some info on his FX - so the teacher who didn't know him had an idea of who he is. Oh - and a box of Tim Hortons Timbits helped too. The IEP team was very impressed with us - and while we didn't really discuss goals - we felt very comfortable with the team. We agreed to meet again in 30 days so the teacher had a chance to get to know Hayden and we could put together better goals. Overall - it was an ok meeting - and we feel pretty comfortable that our team will listen to our concerns.

Which leads to today and his first day of pre-school. He put on his Little Einsteins back-pack - and with some coaxing and prodding walked to school as Mommy and Daddy took pictures and filmed. He wasn't too happy to be in the classroom when we walked in - but we took him in and let him go - and headed to breakfast. Teacher said he did pretty good - got a little tired towards the end - but the night before he didn't sleep too well and this was his first day - so we think it will get better.

And so our education journey begins. Our ultimate goal for these 2 years of pre-school is to get Hayden prepared for full inclusion into Kindergarten without having an aide to help. Every IEP we sign and every step we take is to get to that point. Then - we evaluate where we are there and make more goals.

I'm sure this will be a process of ups and downs - and the road will not be easy. But we are prepared to give Hayden everything we can - and we know he can do it.

God Bless

Dads Night Out

2008-08-16T12:39:00.000-07:00

The one thing I've learned so far in this experience is that we are not alone. For the first few months after diagnosis Tina and I felt so alone - like this has only happened to us and our lives are just finished. We then came across the Fragile X of Michigan support group which has been tremendous, and Tina has made some friends with a couple of the ladies and they do Girls Night Out and other things - which again, is so great because you really spend time with people who get everything you are going through.

Well until last night - I never really found a Dads Group of guys who are going through the same experiences - not that I was even actively looking for one. Through the friendship we have developed with Ted and Mary Beth I learned about a group of guys who gets together in Dearborn at the Futures HealthCore Therapy Center and the gentleman who is volunteering to host the group is Rich Ham-Kucharski. Again - my skeptical self I thought this would be some boring "Hi, my name is Mike and I have a kid with Fragile X" kinda thing. And again - I was wrong.

The center provided pizza and pop and there were four of us - Rich, Ted, a guy we met named Seamus, and myself. We talked about everything - how we handled the diagnosis, what our fears were, how we handle people who see our kids act up, how we handle family, how we support our wives, what our hobbies are, politics, activism, and I could go on - but it was just great to have a group of guys who have children with disabilities that we could just sit around and shoot the breeze with. I thought I would be really nervous - but being part of this "community" the understanding that everyone has for each other is really heartwarming. I mean - we didn't sit around and hug and cry and stuff - we're men for goodness sake :) - but we understand the feelings each other has and it's really great.

I know I plan on going again and I think Ted does too. We learned that Rich was an avid bowler years ago - and of course my Mother owns a proshop - Rip The Rack (check out the link to the side - plug, plug) and we are thinking of maybe scheduling the next Dads Night Out at Rosebowl Lanes.

We have each other, we have Hayden, and we have family who love and support us - and that means the world to us - it's hard to put into words. These people we've met though and these groups we meet with - they are really helping us get through this and to understand that all over Gods green earth - there are people who understand us - and that feels really good too.

God Bless - Mike

August Update

2008-08-13T18:41:00.001-07:00

Typically I would send an email out to everyone we know with updates on Hayden and things going on in our lives. Now that I'm a "blogger" I'm going to post those updates here.

So whats been going on? Well one big change in our lives is our eating habits. Tina has done a ton of research about gluten free diets and organic diets and all the chemicals we put in our bodies that come from our food and the effect they are having on us. Well through her research she suggested that we try going to an organic diet - at least for Hayden. I'll admit I was skeptical - but boy was I wrong. Has he started talking full sentences - no - but the progress he has made since we went to organic in just the sounds he makes and his comprehension has been remarkable. He hasn't lost any of the words or sounds he has learned - when in the past he would learn Dada for instance but a few weeks later it was gone. Now he just babbles like crazy which is light years ahead of where we were.

I will say though - organic is expensive. Not so much with condiments and all the stuff you buy just once in a while to keep in the house - spices, canned goods, etc - but meat is crazy expensive. I can get boneless skinless chicken breasts at our local meat market for a bulk price of $1.99 per lb. Buying it organic takes the price to about $8 or $9 per lb. We've really liked going to Whole Foods Market - but there are only two in the area - and they are about a 30 minute drive. One is right near my office - so I'm able to go at lunch now and then to pick up stuff. I tell everyone this - but organic food really tastes better - I was actually very suprised. It has been good not only for Hayden but for Tina and I as well.

Another new thing coming up is that Hayden is starting school on September 3rd. Our school district has started a brand new ECDD Program (Early Childhood Developmental Delay) at the school 6 houses away from us. The Special Ed Director invited Tina to be on the hiring committee for the new teacher which she was very honored to be part of.

We have already bought him a Little Einsteins backpack and I've taken the day off so we can film the whole thing. He will be going 5 days a week for 2 1/2 hours - so it will be a big adjustment to Tina's daily schedule. Alot of new free time - but I'm sure she will really miss him.

Other than that - not too much more going on. My sister and my sister-in-law are both due to have babies towards the end of August. We are looking forward to being Aunts and Uncles again. We pray everyday for them for smooth births and beautiful healthy babies (my sister is having a girl and the other one will be a suprise).

I will sign off with a saying my wife put up on a chalk board in our house:

See your child before you see the disability. This is a child who has more to offer than you ever imagined. This is a child who will teach you more than you ever learned in school. This is a child who will bring out the kind of love in you that you never knew you had.

Amen to that - God Bless - Mike

FXAM 5k Fun Run & Walk

2008-08-13T18:19:00.000-07:00

This past weekend we participated in the 5k Fun Run & Walk put on by FXAM (Fragile X of Michigan). It was another great event to be part of. With the support of so many wonderful people we outreached our donation goal of $1,000 !! The support was amazing and we are so thankful to all who helped us.

The day started out with a Starbucks run because we knew we would need that extra energy - and we found out that Hayden loves Chia Tea Latte's - his Nanie's favorite. I think he drank most of it.

Thanks to Ted and Mary Beth for being so generous at the gate when we got there.

Let me just take a moment to say how wonderful it has been to get to know Ted and Mary Beth - we had such a great time together at the conference and have become close friends - they are amazing people and we are blessed to know them.

The weather was absolutely perfect for a walk - and it was totally not a typical hot and steamy August day - so it was great. We had Hayden in his walking stroller and he had all the amenities - toys, food, books, and someone to push him. Got a little antsy a few times and wanted to walk - which was pretty cool. He likes going for walks with his Mommy so I think he really liked it.

After the walk was the FXAM picnic. Again - another great event to get to know the people in our "community". They had bounce houses and stuff for the kids - it was really great to watch. Tina's Mom was with us and she got a chance to really see and meet all the wonderful people in our lives now.

A great event put on by FXAM and now we look forward to the golf outing in September and then our monthly group meetings start in October. The national conference is in Detroit in 2010 so I imagine we will start planning for that right away.

God Bless

Back from the conference and...........

2008-07-28T17:12:00.000-07:00

......wow does my head hurt. :)

My wife and I attended the 11th International Fragile X Conference this past week (7/23 - 7/27) in St Louis. We now think of our life as BC and AC - Before Conference and After Conference. Being newly diagnosed in October 07 we were doing everything we thought to be the best parents we could be for Hayden - and we gave it 110% all the time.

We weren't bad parents - but wow is there so much more to this than we thought. We met some unbelievably dedicated people to the Fragile X cause - therapists, researchers, psychologists, parents, doctors, and the list goes on.....all dedicating their respective talents to helping the kids afflicted by this disorder and in trying to find treatments and cures.

If I would say that I went to a dinner reception 5 days ago and was able to spend time and meet with some of the most high profiled hollywood actors or sports stars - I would have been pretty impressed with myself. Now 5 days later - I can say that I spent time with Paul and Randi Hagerman, with "Mouse" and Tracy, with Marcia Braden - and I would tell you today Tiger Woods who? George Clooney who? Don't get me wrong - maybe Tiger and George to great things for charity - but their lives are a more high profile than the other things they do.....these people we met over the last 5 days - they are my heroes and my sons too.

I became a new parent over the last 5 days. Do I love my son anymore today than I did 5 days ago - not at all - I still love him with every part of my being just as I did before. But something changed in me - and I'm sure it will take time to actually now how that change will manifest itself - but I feel different. I look at my son different. He's no more or less special than he was - but I know so much more about him now than I did before. Maybe that's it - maybe I've become closer with him because I now know more about who he is. I don't know - it was a really strange feeling coming home after those 5 days. It was a new home and new time in my life - this experience was truly life changing. I know my wife feels the same way.

Back in February 2008 we learned about a support group that meets monthly as part of the Fragile X Association of Michigan. This is where we learned about this conference and are so thankful that we went. I plan on becoming much more involved with FXAM and through that probably much more involved in the National Fragile X Foundation as well. There are some advocacy days in March in Washington D.C. to lobby for more funds and research. I've always wanted to dable in politics and this might be my way.

Life is different - it's definitely not the way I thought it would be - I don't think any parent has any plan for this kind of life. But I look forward to every day, to every challenge, to every victory - I know God has a plan for me - I'll be sure to ask Him why it was this plan when I see Him - but He has a plan and without this plan Hayden would never have been part of our lives - and I can't imagine our life without him.

God Bless - Mike

Fragile X of MI 5k Fun Run & Walk

2008-07-02T09:52:00.000-07:00

On August 10th my wife and I will be participating in the Fragile X of MI 5k Fun Run & Walk. This is a great event to help raise funds to support Fragile X families in MI going to local and national conventions, helping our local support group, and funding the National Fragile X Foundation for testing and research.

We have set a personal goal to raise $1,000 for this event - and already through July 8th we have raised or had committed to our fund $1,320 !! It is truely astounding - and the prayers, well wishes, and words of encouragment have been amazing.

You all are truely angels - God Bless you all !!

If you stumble upon this blog and would like to support us as well - please send an email to ourfxjourney@gmail.com for info on how to donate.

The Fragile X Factor

2008-06-30T13:40:00.001-07:00

A great article in Time Magazine this month about Fragile X.....

http://www.time.com/time/magazine/article/0,9171,1818268,00.html

.....really helps explain it in less technical terms.

God Bless.

Moving Forward

2008-06-21T21:12:00.001-07:00

I've created this blog to share our experiences, struggles, and triumphs with Fragile X Syndrome. My son Hayden was diagnosed with Fragile X in October 2007. Since that time our lives have been completely changed. What we thought was normal and what we thought our life would be is nothing like what it actually is or what it will become.

What we have learned though in the past few months since D-Day "diagnosis day" is that our lives have not come to an end - but yet have only begun. Each new day brings it's own set of struggles and challenges - yet each new day also brings the joy, excitement, happiness, and the true blessing from God of being parents to in our eyes the most wonderful and special child in the world.

It is a struggle, but each day we move forward - each day is better than the previous and each day is to be cherished to its utmost potential. In the past few years - and especially the last 12 months - I have learned that nothing is to be taken for granted because it can all change without your approval. As I write this first post I make a personal commitment to live each day to the fullest and to move forward when life knocks you back.