Outings…

Do we get everything right in life? Ofcourse not. Do we plan and plan some more to only see we forgot something.. everyday. As parents we try our best.. sometimes our best isnt good enough. It is a normal thing especially when it comes to outings. We usually try to do something every week, month at our house. Things do become difficult. Zequal hates leaving the house. He absolutely fears the unknown of new places. Do we make it out of the house unscathed 9 times out of 10 it is a big no.

We try doing things that all 3 would atleast semi enjoy. Some enjoy more than others and so on. Sometimes it is a nightmare to just get out of the house, sometimes we have to stop 15 times for a drink or to pee(mind you we are only usually going maybe half an hour away) sometimes we get lucky and everyone seems excited.

This time we went to the zoo. Zeq was the only one home because Rylee and Hayden were on their own adventure. But we decided to go to the zoo. So we tell Zeq. He is super excited. Next day gather up and head out. Not without changing his shirt, and shoes.. twice.. making sure we were going to get him a drink, and food he likes. We got this, not our first rodeo with him. Start our adventure he eats lunch on the way, because we are going to have lunch when we get to the zoo. But getting lunch is much easier for him and us as well.

We arrive at the zoo, he is fed, phone charged. Get inside and sit down for lunch he even has a small piece of sandwich. He only had a few bites but hey that’s more than usual. He ask me if we can go ahead and go to gift shop incase it closes before we get back to it.(for fear of missing it) Ofcourse we can. While everyone is eating we go. He carefully, thoughtfully makes his choice(after 25 mins and talking to all the stuffed animals) he carefully chooses a tiger. Which he now sleeps with every single night and he comes down to have breakfast and meds with him every morning.. his name is…… tiger.

Lunch done… tiger bought…bathroom stop… on to the animals. We walk and he squeals at some of the animals.. pointing them out to us. Or hey did you see. We learn some new things. We take breaks along the way, lots of them. We make sure to find the elephants so he can take a picture for sweetiepie. We walk at our own pace, and allow others to go in front of us so he can avoid the crowds. We stay extended times at the aquarium tanks because it is his favorite. We take pictures, we talk to the animals.

At the end of trip he had a lot of fun, he bought a new best friend. We did this all not perfectly but in our own way. There was screaming in the car, crying because he began sweating, frustration because the lion was laying down. But at the end of the day none of the trying times mattered, especially when walking upstairs you overhear him introducing tiger to buddy, bunny, and beary.

Yes we try each month to do something that they will have fun and make memories from. No it never goes as planned. There is always something. But the moments of a smile, a new best friend that make all the exhaustion worth it.

Life is what you make of it. You can choose as parents of a disabled child to stay home because it is the easy route. So no one looks at you when your kid melts down.

To me..let them look, let zeq cry when theres no chocolate milk. Nothing will ever be perfect. But if you push through to get past all the not perfect things, you will end your days with story’s about elephants teeth and a new member to the family..tiger.

Dont let the fear of others reactions/opinions be the reason not to do something.

Onward and upward

Brain scans..

Zequal has had many test throughout his life. Some just simple talking tests, some written, some in the hospital. This was last year he had to get an MRI, and an eeg. He was not a happy camper.

He was convinced that during the eeg they were going to send some sort of waves into his brain through these sticky pads. I mean if you think about it he has a valid point. These tests are never fun, they exhaust us all. That day these stuck out so much because it had its funny moments. So initially thought they were putting waves in his head from these computers.. we assured him they were not. So down a few flights of steps for the MRI. Hes not going. Hes not getting an iv, and they are absolutely not taking of his pants… wait what?!?! Backup.. why would they be taking off your pants?..!? Tears mom I dont want to take off my pants. Ok buddy they aren’t taking them off, hence why you wear softpants. Still doesnt believe me. So before the nurse talks to him, I pull the nurse aside(like I do at most appts) and tell the nurse “you need to tell Zeq that you are not putting an iv in him and you are by no means taking his pants off” the nurse laughed and ask why he would think that?!?! I said probably for same reason he thought the eeg was going to send weird waves into his brain.

But they gave him some happy medicine to relax him then he went and got his tests done. When he woke up he had pants on and no ivs so all was well.

They were looking for anything that could be wrong from his brain down his spine. He has no reflexes when he is tested. When he sticks his tongue it goes sideways. You know special case.. nothing showed on the tests so was a good day.

This story makes me laugh about needing to make sure he had pants on.

Onward and upward