Monitors for days…

Yep… after school Zeq comes strolling out the doors with yet another monitor. All are working monitors as well.

He is excited to say the least. It’s nice to see the way he gets excited about these computer parts, as simple and little as it may seem. We may not be as excited to see the 6th monitor and 14th keyboard come home. But we manage.

A few Johnny episodes this afternoon, with his but, but, but, but….. didnt last long.

A new situation has arose. He wants chicken nuggets with everything! Absolutely everything. Mom can I have hotdog….with chicken nuggets. What about pork chops with…. chicken nuggets. Like where did this come from?!?! Also who eats chicken nuggets as a side dish…. Zeq does.

The elves brought felt bunnies a d we decorated the with stickers. Zeqs bunny had every flower pot sticker on it. Tons of stickers every inch had a sticker on it. We had lollipops as well. Zeq really enjoyed them. He made a plan that we seperate the rest and divide them between them and take his to his room. We assured him there would plenty whenever he wanted another one. He was fixated on this for a good 20 mins. After he went up stairs he never said another word about it.

Life is about the little things. Especially to Zeq. Little things tend to turn into huge things. Not a lot of people take the time to enjoy the little things. But Zeq he does..

Tomorrow is right around the corner. I was thankful to see his smiling face carrying his monitor. I smiled for the same reason. We wrote our story as we always do, and will continue doing so. So until then

As always

Onward and upward

He warned me…

Well all I have to say is.. he warned me. That he did.

So last week Zeq told us he would be bringing home some new monitors… and a few keyboards.. i use the word few very lightly. He also told us he would need a big box. Well never thought anything about it. He never said much more about it. Today was like any other day. Went to school. No random text saying meet me at the steps please. Nothing not a word.

So waiting at school like any other normal day. Bell rings waiting like a regular day. Then I see him. “Trying” to carry this ginormous box half the size of him. Rylee runs and helps him get it to the car. It takes half the backseat mind you. But wait there more.. he says mom thats not all.. here look and he unzips his backpack. Yep he was right, there was more.. his backpack was filled with keyboards.. not a few but many! He said mom I just couldn’t leave them there by themselves. Well buddy I guess your right.

So then we start driving home. Meanwhile he is telling me all about his treasures. He was so excited. He also found a 5 dollar bill at school today. He went to give it to his teachers. His teacher took it.. then at the end of the day when it wasn’t claimed his teacher gave it to him to keep. He was supper excited. He put it ofcourse to his computer fund.

Goes to show how little of things can change someone’s day.

Tonight our elves brought puzzles whi ch Zeq loves to do. As well as the threat of reese eggs.

Johnny came a few times not staying long at all. Shadowy figure came and did as he normally does. Sends his troops on their way, directing them the whole way.

Just because our life isnt normal, or easy doesnt mean we can’t have a good time doing the littlest of things. Just because Zeq is disabled doesnt mean his life stops. Doesnt mean he is confined to a room with no possibility. It only means we do cool things, talk about randomness at any given point, mean maybe we cant make plans like all others but in no way shape or form does it mean we have to live a disabled life.

Life is meant to be lived, and guess what that’s what we are doing.. we are doing it our way though.

Tomorrow will be here soon, make everyday something to remember. Make memories and have adventures.

Today I smiled at his treasures, and thankful for the all the same. We will continue to write our story even if no one ever reads it. Because we can, and one day someone will smile because of it. One day it will help someone.

As always

Onward and upward

Ever wonder why?

Have you ever just sat and wondered why things are this way or that way?!?!

Sure as soon as something goes wrong we are first to look up and say why me.. but most days when things are going good no one ever wonders why, or even thinks of others. Not saying it is a bad thing or anything. Just that some don’t even think about it unless something goes wrong.

I guess I am different because I do sometimes think man this person or that person seem to be having a rough time, or that, that person has a story to tell.

Ofcourse I have thought, even talked out loud why Zeq.. why us… because before in his younger years I didnt have the knowledge, guidance, or sadly the patience. I wanted to know why. I needed that answer. Was I a horrible person in my last life that they are punishing him.

It wasnt until I stopped being angry at the world when he was different that I started asking why not.

Why not him. He is the strongest person I know. He is smart beyond words. May not be common core smart, but smarter than you and I will ever be. Because guess what he has done not because he wanted to, but because he was born too?!?! He was born with the ability to see the good in everything. When he sees something special he doesnt just say oh well that’s nice, he tells you excitedly how beautiful it is. He was born with the ability to make peoples heart grow 100x times. He was giving the ability to test every button of patience one has, and then only then make them laugh. He was given the strength to support multiple personalities in his little body.

So why not him!!! Disabilities aren’t a death sentence. He knows no different! He knows no hate.

So I could sit around and say why him, why us.. but I dont wonder that anymore. All I know is why not.

One day he will teach us how to be humble. That if he can do it every single day that we should be able to as well. One day he is going to show us all how to be appreciative for things we have rather than what we don’t have. Because we are too quick to say damn that was a bad day because we broke a nail, or lost 5 bucks, but after 20 personalities run their course through him he can still have a good evening doing a simple project. He will do great things I have no doubt of that. Not because he is my son do I think that, but because he has already gone through more than you or I ever will in our lifetime.

So we can say why me, why us.. looking for a clear cut answer. But instead maybe we should just be saying why not..

Tonight our elves brought us some wooden ornaments. Zeq was indecisive between two but finally went with a boat wheel. He was happy with his choice. John and Johnny have came and gone today. Nothing out of our norm.

Tomorrow is a new day. New adventures. New day to live. So why not write your story. Tell it your way.. dont let someone else tell it for you.

I was thankful for chicken nuggets today, because apparently he eats them again. I smiled at him!! Because he is who he is.. theres no changing that. As always we lived our day, we wrote our story and will continue to do so..

As always

Onward and upward


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When in doubt don’t throw it out.

This should be Zeq’s live moto.. because this child doesn’t throw anything away. When I say anything, I really mean anything. He saves everything because it can be used for something else. I mean he does have a point, in some sense. But when it comes to empty boxes, yea they can be recycled or thrown away. Strings again I have no problem throwing them away. But not him, no way he will save it until the end of time if he could.

But he can only save it as long as I allow it. Everything I throw something away, he knows it. I tell him my logic around it sometimes it is a good enough explaination and sometimes it is not. Either way if I would allow it his room would be filled to the brim with all of this. One mans trash is Zeq treasure. I think of this everytime I step foot into his room. It makes me laugh everytime. But I know in my heart it is true. That is why when he is out of the room for a little bit I try and make my round.

Today was another quiet day for him. John showed up with his grumbly self. Off and on you could hear him complain. Johnny came a few times as well, hyper and high pitch. He only stays for a few minutes most days. Mainly comes searching for the mommy kitty. Zeq again had a headache this morning gave him medicine and was fine after. Saturdays are his and all the personalities favorite day, there is no need for pants, shirt or shoes, and usually can skip bath. So best day of week for all.

Tonight our elves brought felt bunnies, chocolates, and chocolate marshmallows. Zeq didn’t want either, and he is still “saving” his blow pop. I use the term saving lightly, because the truth is he is never going to eat it. It will be one of those weekly things that is thrown away.

Tomorrow will be here before you know it. It is what you did within today that will set you apart from all the others. You can choose to do nothing and miss out on everything you could be seeing, all the adventures that are just waiting to be had. You could miss out on all these treasures that Zeq is finding. Today may be over but tomorrow is waiting to begin. How will you begin tomorrow. There are stories to be told and life to live.

Today I smiled at him still saving his blow pop. I was thankful it was Saturday and as we do everyday, we wrote our story and we will continue to do so.

As we always say

Onward and upward

No more bottles!

So for the last.. well I would say 6 years, Zequal has used these plastic bottles that have different pictures on them. Some have emjois some have words. We probably own close to 25 of them, maybe more. We have gotten new ones, thrown some away, left some at peoples houses, melted some in the dishwasher. You know the normal. Well yesterday he or whoever was here decided he can no longer use these bottles. Apparently the lids smell like soap(over the last day I have smelled these lids thinking I did not rinse enough) To no avail… they are fine.

But not to Zeq, he refuses to use them. So today we got some cups with lids, mind you still plastic. Just regular plain jane cups. Nothing special, nothing cool, not even cool picture on them. When he got home from school I showed him them. He was very excited. Got some tea and all was well in his world once again. I have ask him various times throughout the evening if the cup was doing ok and he said they are. That is all that matters.

He has been more quiet again this evening, as he was last night. But he is himself mainly. Occasionally Johnny surfaces, and this unknown person. But he has not stayed very long with each visit. But he is pretty withdrawn none the less. Hoping for more of himself tomorrow.

For the past 3 days he has had a headache, I am not sure if it is due to weather, or maybe the personalities that are coming are causing them. It is not Henry because he has not ask for liquid medicine, that is a plus also.

Our easter elves brought some pom pom bunnies and chicks. Our treat was blow pops(only 1 grape in the bag, thank goodness for it is the only one Zeq will eat) and pixie sticks(everyone tried them)

Another big deal is this blog now has its very own domain. It may not seem like much to anyone but it is a pretty big deal to me. I appreciate each and everyone that chooses to view my blogs, and let my family into their lives.

Tomorrow will be here shortly, its not what you didn’t do in a days time that defines you, it is what you did do that makes you who you are. Today I am thankful for Zeq being himself more than yesterday. I am grateful to sit here and write these blogs, and actually have some people who read them. I smiled when he got so excited that there was a grape blow pop(which he is “saving”) As always we will continue to write our story, whether a million people read it, or just one person reads it and it helps them. Either way it is a win for us.

As always

Onward and upward

When things go oddly quiet…

Well Zeq has been very very very…quiet. he has been withdrawn from a lot. When he talks it is matter of fact. So we know it’s not him. But who is it? I’m not sure. At first thought John but he is not grumpy or OCD.

He is more of.. can I have 2 hot dogs and 8 chicken nuggets. He is while doing project(color own stickers) very disturbed by fact that he messed up coloring, wishing he would have left the firetruck blank. Or how the black looks green, shorts smell weird kinda person. Not sure who exactly we are dealing with.

But it is not Zeq, I havent heard anything about computers today. Or even about a game or anything. I was told he doesnt eat reese cups. As well as he doesnt want to drink tea our of the normal bottles we have. He needs an open cup. Not playing his game, but instead just listening to YouTube.

Hes not talking to anyone, unless he is spoken too first. This personality has been here all day. Longest ever. Zeq peaks through every once in awhile

Odd strange evening to say the least.

Tomorrow will be here soon, and we will see what it brings.

I was thankful today, for today another day to tell our story. I smiled at Zeq asking for dinner so precisely. We wrote our story as always.

Until tomorrow

As always

Onward and upward

Blood work/pancakes/IEPs/projects

So as the title says that has been our days here of late.

First off.. blood work.. can you just say uggh?!?!!?! Funny story about this so rylee had a doctors appointment earlier this week and had to have labs drawn. While talking about Zeq said I hope I don’t have to do that soon. Me… you shouldn’t (biggest mistake ever) the next day I am called he has to give blood. Ugh ugh and ugh. Oh and best part is he has to fast. So decide to do this monday talk to him about it.. we agree we will do this, he can have the day off from school and we can get breakfast after. Deal!

Monday comes we go. So far so good. I sit down, he sits on lap, I cover his eyes. Still ok. Needle goes in.. full blown panic attack, hyperventilating. Needle is already out. Still hyperventilating, sweating, crying. Uggh get a drink and calmed down. He never ever wants to do that again.

Whew over. We proceed to Ihop. He cant decide what he wants. Finally does. His breakfast…. one regular pancake with whipped cream and chocolate chips, 2 pieces of bacon, plate of onion rings, and a sweet tea?!?!?! Who eats this… oh well made him happy. Blood work done out of the way. The reason it was a rush to get done, they wouldnt release his anti physcotic medicine until it was done.

Onto IEPs. My most favorite thing in the world. Go in.. first and foremost remember last years field trip that he was left out of?! Well yet again. This year is Washington DC an over night trip. Guess what.. yep you guessed it again excluded(well we were offered to follow behind and pay for everything) so how story goes. When first heard of trip I went in that day and ask. They were unsure how would need to be done. Told not to pay because he would have to stay in room with me no problem. What would the balance be for rest of trip.. unsure will get back to you… nope never did. So Zeq was told one day at school you did not pay, you can not go. Ok… why?! Why tell him? Did anyone send note home? No.. did anyone try and contact me? Again no. This was all addressed at IEP. If nothing else comes from it maybe just maybe they will plan all trips so that everyone can go without a problem.

Rest of iep was about transistioning into high school?!?! Yep high school. We decided as a team that all classes will be in special education. Class size will he 12. His elective class will be constant supervision, as well as his lunches. A lot of modifications that should help going forward. We hope anyways.

Our Easter elves have brought color dinosaurs, pom pom bunnies, and felt egg pillows . As well as the night treats. These are always a good way to wind down our evening. Everyone enjoys them and the routine helps Zeq. We have had many personalities over past few days. I can only assume it is because of blood work, missing a anti physcotic, and just life in general. He didnt sleep for a whole entire night, then the next night went to sleep oddly early without being told.

We never live a dull life for sure. Life isnt always pleasant and it’s not always fun, but it is ours and we will do our best everyday. I am thankful to be able and do the projects with him, and be able to be in his mind his hero and let him sit on my lap for blood. I have smiled over his choice of breakfast, and no matter what we write our story.

Life is to short not too. Obstacles come, and we deal with what life hands us, and we continue on. Because tomorrow will be here before we know it.

As always

Onward and upward