Monday, December 19, 2011

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

Thursday, December 1, 2011

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

Tuesday, November 15, 2011

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

Thursday, November 10, 2011

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"

Wednesday, October 19, 2011

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.

Friday, September 23, 2011

Bitter Sweet

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.




Friday, September 2, 2011

Dry run!

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

Thursday, August 25, 2011

Get out of Dodge

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.

Saturday, August 6, 2011

The calm before the storm










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

Monday, July 18, 2011

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

Thursday, June 30, 2011

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.

Tuesday, June 7, 2011

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.

Sunday, May 8, 2011

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.

Wednesday, April 27, 2011

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

Saturday, March 26, 2011

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

Friday, March 18, 2011

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!!!!!!

Wednesday, March 2, 2011



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