sleepless nights

So for 8 years we have been accustomed to no sleep ... Ty was always waking up in the night, multiple times, and keeping everyone else awake too. Then I attempted keeping both boys in the same room, in the same bed with a baby gate up and I was across the hall. Still sleepless nights. Tripp would wake up multiple times in the night to go to the bathroom, when Tripp was up Ty would get up and vice versa. Today I can tell you that the boys have had more sleep in the last month than any of us have in the last 8 years! They started out in the new house in the same room and separate beds. Well that didn't work. Ty kept keeping Tripp up all night, as I started to move Ty's bed into the other room he let me know real quick that he wasn't happy about it. I asked him if he was upset about me moving his bed and he quickly shook his head yes.(I was so pumped about the quick and clear communication!) So I had a heart to heart and told him this was his last chance. He did better that night. However, the next night he didn't - he was up and down flipping on lights and attempting to open the gate. So I bought a gate that used hardware to go into the wall and moved his bed, still not sure if this was going to work?! Bedtime came around and Ty went with me to tuck Tripp in and say his prayers and then I put Ty in his bed, tucked him in said his prayers and closed the gate. I sat quietly in the living room where I could see both rooms and just waited. Ty came to the gate a few times to see if I was there and finally put himself back in bed and went to sleep. Each night got easier and easier. For 8 years our bedtime routine has been: sit in the room until the boys fall asleep, then sneak out like a ninja and hope you don't step too heavy, breathe too loud, stand up too loud .... the list goes on... I'm sure you think I'm kidding, but there have been many nights that the simple motion of moving from a sitting position to standing could wake a child from a deep snore?! So for me to walk in each of the boys rooms and simply tuck them in and walk out and call it a night - I felt like I won the lottery! Seriously, I was in disbelief and I'm pretty sure I pinched myself just to make sure it wasn't a dream. There are still nights here and there that the boys may wake up a little early or need me in the night but not every night! I have even had to go in and wake them up the next morning - that has maybe only happened once in the last 8 years?! It's the little things that turn into big things that make me smile and make me think.


It makes me think of how much God does for us. Those times when we don't think He's anywhere near us. We run around kicking and screaming and crying because we think He doesn't care, He just left me here by myself, He put this gate up so I can't get out, Why, WHY, WHY?!  He's really in the next room waiting, allowing you to grow, allowing you to learn how to control those fears and emotions that want to run rampant in your soul. If we could just trust Him, know He is on guard and know that when it's time He will come to the door and open that gate. Not on our terms and not while we are in the middle of a raging fit .... but when He's ready.

change

So it's been a crazy few months and I haven't had the time or the energy to make a post but I think it's time to...
Ty is doing pretty good - we are trying to figure out his medication and lots of trial and error right now but bottom line - he's still not sleeping through the night and is having some panic attacks here and there and seems to be anxious a lot of the time. He has been pretty defiant at times both at home and in the classroom. We are hoping to start using an AAC device for communication once school starts back in January. We have been using a laminated sheet with the words and "buttons" on it that mimic the screen for the AAC device to practice at home and they use it at school. He has done really well with this and we are hoping the device will just further his communication skills!
The trip to TN was lots of fun, the boys and I broke the drive up into two days just because I wasn't sure how well they would do traveling for 9 hours. They slept all the way to the hotel the first night and then Ty slept most of the way to Pigeon forge and we hit the ground running. I only had a day and half to spend with them because our Christmas Cantata was that Sunday and I had to get back but we packed in as much as we could in that time. We ate at the Apple Barn, shopped, shopped, shopped and shopped. Then we hit up a go-kart track and once the rest of the family made it to TN we met them at the cabin around 8 or 9 that night. The next morning we went to the go-kart tracks again at Tripp's request. He rode his little heart out with uncle Matt and uncle Josh and we played some video games at the arcade. Ty loved the arcade, there were a few games that he really liked. One was a giant fruit ninja game where you slice the fruit on a giant touch screen and get points and tickets for high scores. Then he loved the games where you drop your tokens in and watch them spin round and round but his favorite was probably skeeball. He didn't play by the rules but he kept coming back to it and pointing at the coin slot for us to pay and play lol. We also got to go to the Wonderworks indoor park which was really fun. Ty loved playing on the giant light bright board and the giant video game you get to stomp on the characters (kind of like wac-a-mole) those were probably his favorites... he did try and steel the basketballs from the basketball shoot but we were able to redirect and keep moving. All in all he had an awesome day and I was real impressed with how well he handled all the hustle and bustle of the road trip and then hopping from one thing to the next in town. Maybe I'll be brave enough to try a bigger theme park soon? Who knows? Tripp was an awesome little brother as always and I think if he could have rode go-karts all day he would have! He loved getting up and hitting the town, shopping, and just going ... he never wanted to stop.
Sam came up Saturday and finished out the trip with the boys and they got into all kinds of things and then on the ride home Ty didn't do so well... he had a rough time but they made it home safe and sound! And now for Christmas!






So I'm sure this won't go over well with some and others may have seen it coming and some of you just might not care - so feel free to stop reading here lol ...


Life in our home is about to change, Sam and I are getting a divorce and trying to keep things as normal as we can for the boys in the process. No need for details here on why and what happened ... and really it doesn't matter... bottom line is things just didn't work out. But my hope and main concern are these two boys and to keep them happy and healthy even in the midst of something like this. How does that work? I don't really know? Prayers and more prayers would probably be the best thing I could ask for. We plan to keep the boys in North Pike and at our church ... will things be awkward?? ... yeah I'm sure... but we are pretty used to awkward... this isn't something I ever thought I'd do and it was most definitely on my list of things "I won't do" but it's crazy how things change and you can't really say what you will and won't do and you sure can't judge someone for decisions they make because you don't know what they went through or may be going through that brought them to that point. So another life lesson learned and I'm just praying we can be better parents for the boys and still show them the love and grace of Jesus in the middle of the madness... So why say that here on Ty's blog? Well because it's a part of our life and our journey and it probably has something to do with his behavior issues and we just need prayer: prayers for wisdom and guidance and communication even when it's hard because at the end of the day it's not about me or sam and to just love us through this transition time and finding our new normal ... I love ya'll ... and thanks for reading.

What if you fly ...

I used to dread birthday parties, they would give me the shakes, because there were so many unknowns. Obviously we knew the person who invited us but what about all the other people? I would almost work myself up over all the little things so much that I would get a headache just thinking about all of the what if's. What if a kid picks on Ty? What if he has an accident? What if he accidentally hurts another child because he is just like a bull in an china shop sometimes? What if he slips away and runs off? What if someone stares at us and I say something inappropriate? I could go on and on but I'll stop here.

This year we have branched out and even attended a few 'outside of the family' birthday parties. Just this past weekend we went to a birthday party at a gym and the boys had a blast! When we arrived Ty went a little crazy with some doors but we were able to redirect him. Once we were in the party room he found some balloons and was thoroughly entertained with two balloons and a corner mirror. Tripp gets quiet in large groups with adults and kids and so he was over by the birthday boy not sure if he should put on his mask (it was a super hero party) or just leave it, he eventually decided to wear his captain america mask once the party got going. As we sat at the table visiting with everyone, this little girl came up to us and said "Hey Ty, Ty hey buddy". Ty was very busy in the mirror with his balloons but he did stop to recognize the little girl and just grunted and danced with his balloons. The little girl started talking to me and told me she went to school with Ty and that last year she used to take kids to his class and Ty would slam the door in her face. She said it so matter of fact and I kind of laughed and told her I was sorry he slammed the door. I explained how he loves to watch doors and he really loves to run. Her eyes got big and she said "oh I sure know that! We don't let him out the door when we take things to Mrs Raybon's class". I talked with her for a little while longer and then Ty decided he would join the conversation. He started jabbering and "talking" to her, showing her his balloon and she was just so sweet to him. I even heard her say "yeah that's right, tell me about it" almost in a motherly tone. My heart was so full in these moments. We left the party room and headed out to the gym area and this sweet little girl walked with us and wanted Ty to play with her. Ty discovered the jump from the top of the foam pit and wouldn't do anything else! He saw a boy scale the wall for a higher jump and immediately made his way over there, turned and looked at sam, pointed to the jump and said "EH!" As in Hey put me up there lol. I could constantly hear that girl saying "Ty hey look at this, there's a trampoline over here" "hey Ty, look a slide, do you wanna come with me" "Ty check this out" .... it was so sweet. Made my day to see just a friend from school who knows him and wanted to play. Tripp started off playing with Ty but he was real unsure about that big jump into the foam pit. So it took him a while to finally do it, and he was off with the boys running, jumping, scaling walls.... just doing whatever and coming back often to check on his bro and then finally making the jump off the ledge. When it was time to go, neither of the boys were ready and Ty fussed at first but he was pretty worn out so it wasn't a big fight.

So I guess all of that to say, birthday parties aren't that bad anymore. Yes some fears will always be there but if you go through life wondering "what if" and not doing something just because you're scared. Well then you will never do anything... there's a quote that says:

What if i fall? Oh, but darling, what if you fly?! - erin hanson

Ty was fearless on that foam pit jump... I have a few blurry pictures of him falling just flat out, face first-belly flop, into the foam. Not a care in the world and so excited. It makes me think of how brave he is, how willing he is to just fall, arms wide open, grinning and squealing with excitement... and how he can just fly .... That's exactly how we should be, we should be willing to let it all go and just fall face first into the arms of Jesus.... These boys of mine teach me something new every day, I don't know what I would do without them. Thanks for reading :) love y'all!

Here are a few blurry shots of Ty falling into the pit and a few of Tripp and that sweet little girl who played with Ty:

just a little outing and an update

So, me and the boys went to Apple Bees for lunch (bc we had a gift card) on sunday. We sat in a booth, all on the same side, and throughout lunch Ty was pretty active ... he wasn't terrible just jumpy and laughing and did get obsessed with a few things here and there - like a picture on the wall that had a basketball, he just kept trying to take it down, luckily it was screwed in pretty good! Ha! I wrestled him a few times to get him to turn back around in his seat all while still trying to give Tripp attention etc. Tripp kept himself occupied with his kids menu games and he and I had some mad games of tick-tack-toe going on in between me feeding and wrestling with Ty.... Well as we were wrapping up lunch this man comes and sits in the open side of our booth and then tells us that he likes to acknowledge when he goes out to eat and sees well behaved kids, and told us how sweet the boys had been through lunch and then gave the boys $6 to split between them. As we walked out we gave him and his wife a Ty bracelet and Tripp thanked them one more time and Ty told them "bye".... it was definitely unexpected ... I probably wouldn't have said Ty was "well behaved" that day but this man did, so maybe I need to not stress so much over all the little things and just let them be kids .... and to encourage both of them in the good behavior that they do show. Tripp is such a big helper, he does so much and thinks about a lot of things most 6 year olds wouldn't have to think about ... it was just really kinda crazy to get that kind of acknowledgement from a complete stranger.

Update on Ty:
We have started Ty on a new medication and the doctor said it will take a couple of weeks before it really gets in his system. So far there has been no change. He's been very defiant lately and throwing tantrums and even at times hitting. The last time we tried medication we went through 2 or 3 before just taking a break from it all and he ended up balancing out on his own and listening more, behaving, etc. As school started back and we got more into the everyday routine his behavior just became worse and worse so that's why we decided to give medication another try. We may end up trying a few different things before we know what med and what dosage works for him. But I'm hoping and praying we get the right one that still lets Ty be Ty and just takes away a lot of his anxiety and defiantness (if that's a word?). We will see. Prayers are much appreciated in all of this.

Today is a good day!

Today my boys are in school! 7 days behind the others, but in school so I should just be grateful.... The end ... right?

Don't get me wrong, today is a good day, a really good day! Because I finally got to tell my 6 year old, who has been begging to go to school with his big brother, that he could go. He did a happy dance last night because he was so excited and then woke up and asked me again "do I really get to go to school today?" I just answered "yes, buddy".

Some of you might be thinking "why not just move into the district?" or "maybe you should file your paperwork sooner". Well I sent my paper work in to be released based on the 30 mile rule back in March. The North Pike board didn't act on it until July. (I'm sure there is a rule or something for why?) For those that ask why not just move? Well we had very little notice and were strung along on the possibility that this would be fixed and we had no reason to think this year would be any different than any other year as far as being released and accepted out of one and into another district. When we planned on having kids, we never planned on needing a public school. We planned on sending our kids to the private school. So it's not like we planned on living in just the right strategic location to not pay taxes and reap the benefits, I mean if that were the case we should be 1 mile in a different direction?!

Because it's that 1 mile that started all of this, we are 1 mile closer to another school in an adjacent district....so because of this mile nothing else matters. The fact that I have letters stating that it would be detrimental to Ty's education to move him didn't matter. Some of you may be thinking well he's just in the second grade. You are right. But he has been coming to this school since he was 3 for early intervention. Even though most of his early intervention therapies were done in Hattiesburg at USM, he started at North Pike and has been familiar with the school because of it. So he really is established here. He is loved here. His teachers and the faculty and staff here know him and love him. He thrives in his class room. He has friends. Those friends greeted him today with open arms! They all yelled "Ty!!!!" as he walked in the door. His teacher has expectations for him, she challenges him, speaks his language and encourages him to be who he is! And that alone is worth fighting for. So for now... today.... it's a good day. My boys are in school, Tripp is right down the hall from Ty in class with an amazing teacher and friend! I am excited to see what this year holds for my boys. Because it was a heck of a ride so far.

I received my special release Thursday night, showed up Friday morning with my registration paperwork and dropped it off. Penton tried to give us the run around on when we could register and did his best to make this as difficult as possible. But I will say that staff has been very kind and helpful through this process.

For those that ask, what about next year? I'll get back to you on that, right now I will bask in His glory and this victory... I feel like I have been wrestling a bear for a few months and just won.

still fighting and waiting ....(long post)

Here we are, the week of school registration and my kids are not registered for school. Not because I don't want them in school but because of all of this red tape we are still fighting. Our home school district, Amite County, has released us under the 30 mile rule and is somewhat baffled by the North Pike School District not accepting us. There are probably 20+ families affected by this and some have chosen to attend private schools while others are still fighting to get into North Pike and I believe others have made efforts to move into the district. We were told in our denial letters (that we received in July) that we could attend North Pike for just this year if Amite County would re-release us under a different rule, the "general release", however, according to Amite County there is no such release and they are now waiting to hear from their lawyer and school board to determine what action they are allowed to take at this time. I am blown away by this entire situation and how it came about. We were told in one of the school board meetings with North Pike that they mailed us all letters back in March informing us of this new rule and that we would be reviewed and possibly not be able to attend this year. No one received a letter. No one. When we asked for a copy of the letter, it wasn't given. Today some of the parents and myself met with one of our state representatives and had a phone call with the state attorney and asked questions about clarification of the 30 mile rule. As of right now we have been denied acceptance to North Pike because they said it is against the law for our kids to attend due to us being one mile closer to another adjacent school. However, the law reads that we are allowed to attend an adjacent nearer (nearer than our home district) school because we are released from our home district based on being 30 miles outside of the bus route. Everything comes back to the bus route and North Pike did not determine our acceptance based on bus route, instead they based it on a direct route from our homes to each "nearer" school via map quest. Which is wrong according to the law. So here we are still waiting and trying to get answers and find out if we can be accepted based on the information we were given today. I don't know what will happen because it will still be based on the opinion of the board. I am praying that they allow us to stay.

We asked our state representative if this was the intention of the law? He said "no". Our hope is that we can change the law and allow our kids to continue to learn in an environment that will benefit them and challenge them and allow them to grow and learn with the teachers and staff that they already know and love.

An update on Ty. We have had a crazy summer. I just got home from a trip to Seattle with one of my best friends. We were there attending a conference, the National Neutropenia Network, for people and families living with the rare conditions that causes their bone marrow to quit working (that's the mandy definition). There are many types of neutropenia: congenital cyclic, congenital, autoimmune, idopathic and others that they haven't named. Here's a link if you wanna know more about this http://www.neutropenianet.org/what-is-neutropenia/types-of-neutropenia/. These conditions are so rare that most doctors and nurses don't know how to treat patients correctly and once they are sick and need medical attention it is critical that everything is done just right, and without proper care something as common as a cold, a cut, bug bite etc ... could turn into a major infection and sepsis in a matter of days, hours or even minutes. So it is important for them to have friends and family familiar with their care so that when they aren't able to explain their condition someone else can. The day I left for the conference I got a phone call as I was boarding a plane in LA to head to Seattle. Ty choked on a ball and they had struggled to get it out. It was extremely traumatic for everyone and by the grace of God Ty coughed up the ball on the way to the ER. Sam called me to let me know what happened once it was all over and even though I knew he was ok, it rocked my world. I hate being away from my boys especially when they have had traumatic events. I am a paranoid momma on "normal" days and I guess you could label me as a helicopter parent or maybe even worse than that but sometimes you just have to be. There are so many things that can happen to anyone in a split second and especially Ty. He has started to mouth objects a lot more and is real bad about just shoving things in his mouth; food, toys, plastic bags, just anything. We went to a golf course back in June for a Miracle League benefit and someone handed him a ball and he just put the whole thing in his mouth!? We immediately took it away but it is still scary how quick he pops things in and tries to chew on them or swallow them. Ty hasn't had any issues from his ER visit and as far as we know he is extremely healthy and happy. But this momma and his daddy are on edge watching his every move, more so than normal. We are so blessed to have our boys. After spending a weekend with mommas who fight for themselves and their kids daily to live with a condition that no one really knows much about. A condition that makes hospitals a second home and that forces them to face the reality of life and death on a regular basis. It made me want to embrace this life and each day with a different attitude and to really take advantage of every opportunity I am given. To not be satisfied with mediocre living but to give, love, laugh and enjoy life daily with those around me. To share the love and joy of Jesus with everyone I meet! To not just say "one day we will do ......" but to just do it. I hug and love on my boys all the time... but this past week has made me want to hold onto them even more, give them more kisses and tickles and to fight harder for what Ty needs. To fight harder for what Tripp needs. To give them everything I can in this life and to show them the love and joy that comes from giving your life to Christ. I hope and pray that my boys will see Jesus in me and I hope and pray they will chose to follow Him when that time comes. Our lives are just vapors and I see that more now than I ever have before .... So all of that to say hug your loved ones and tell them daily what they mean to you. Thanks for reading... I know this was kind of all over the place ... we have just had so much going on and it's been kind of an emotional roller coaster in more ways than one. love y'all!

#lettystay maybe we will get some answers on school asap!!!

Ya'll are amazing!

So I really need to just write a post to say thank you! Thank you to everyone who has read our story, who has shared it on facebook, so many of you have changed your profile picture and shared our hashtag on facebook, twitter and instagram... and I am so grateful! There are so many families who are affected by this right now and I hope and pray that bringing awareness through Ty we will be able to change some things. I have met some amazing parents who are fighting for their kids and I hope we are able to make some changes! We are still waiting on the two attorneys to meet and discuss the possibility of allowing the children on the 30 mile rule releases to be re-released under a hardship release for this year only. If this all goes through then I am hoping that it will give us time to change the law. So that we won't have to do this every year and so we won't have to worry about a new "interpretation" of an old law causing so much madness for our kids. Thank you so much for the love and support each and every one of you have shown us these past few weeks. Thank you for the prayers. Thank you for the encouraging words and most of all thank you for loving us! Ya'll are amazing and there have been so many times that I have scrolled through facebook these past few days and had people I have never met fighting for us and it blows me away! For all of you amazing friends of mine, ya'll mean the world to me! Thank you for changing your profile pictures, for sharing our story and for everything else, I don't even know what to say ... ya'll are just awesome! I am surrounded by so many amazing people and I thank God every day for all of you.

THANK YOU, THANK YOU, THANK YOU! ***insert a Ty cackle and face grab here :)

#LETTYSTAY and not just him, but all the other kids affected by this too.... lets do this!