Hope with me

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

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

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

Love,
Tina

Makris Family Vacation

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



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


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

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



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




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

Going with sad........

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

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

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

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

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

Love,
Tina

Holding on to Hope

Dearest Family & Friends -

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

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

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

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

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

God Bless
Mike, Tina, Hayden and "Ponch"

This is how we roll

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

Let me just catch you all up....

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

Here it is my way.....

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

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

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

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

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


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

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

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

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

Tina

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

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.

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