How do you know when....

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

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

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

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

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

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

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

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

Yeah I think I married the right man...

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

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

Love you all,
Tina

Where are your pants?

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

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

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

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

Hayden with his uncle Samuel :)

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

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


Love,
Tina

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

Hope with me

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

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........

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

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

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.