Fragile what?

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...

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...

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!

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

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.....

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Love,
Tina

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

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

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

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

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

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

Love,
Your MOMMY!!!!!!