Pretend Disabled.

When Rylan was first diagnosed in 2005, It was encouraged for me to go apply for SSI.

I never liked getting "assistance" as I always like to view myself as an independent girl.  In my head I was "SUPER" Mom, I was doing this all on my own.

Rylan's pediatrician sat me down and expressed the severity of what was in my future and really pushed for me to get the help.   As a single Mom at the ripe old age of 22, I caved. He was right.....how was I going to do it all?

So I applied for SSI (Supplemental Security Income).   It did help me get some of Rylan's medical bills paid.  It also helped for me to go to school.   All I was thinking about was our future, I opted to enroll in beauty school as I knew it was a job with the potential to make a living while having the flexible hours I needed to care for Rylan.

I spent a good year living off of Diet pills and energy drinks to keep me going.

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I had a schedule of taking Rylan to school at 7am, picking him up and taking him to whatever therapy or appointment he had,  Leaving him with my Mom to go to school by 5, get out of school around 9 and work until 2 am getting home and in bed around 3 to start all over again the next day,

Then Rylan's condition got worse. 

All from one day that still haunts me,

I woke up one morning to my little boy seizing in bed. 

Due to my hectic schedule I made the choice to move back in with my parents.   So when I realized what he was doing I yelled for help. 

Both my parents came running in to help. I called 911. 

As I was on the phone with the operator.....My Mom yells with panic "Jenny tell them to hurry! he isn't breathing!!! He isnt breathing!!!!!!"

I tell them, and My Mom tells me to go outside to wave them down.  It is only 4 am at this time and super dark.  So I do.  They show up and Rylan is breathing but passed out and basically a rag doll. 

They rush us to the hospital, and get us admitted in no time. 

As we were in a room Rylan was looking very tired.  They came in to do an EEG.   When the tech got what seemed like all 20,000 wires on him, he began the test.

Not even a minute into it, Rylan rolls to me, smiles, and begins to seize again.   I remember the feeling of heart break.  I felt so helpless.   The tech hits the assist button and Rylan's bed is surrounded by nurses and doctors.  I am pushed out into the hallway.  I was alone.   That was one time in my life I really needed a hug,  I remember the fear.  Even as I write this I feel the tears brimming. 

Once he stopped seizing They put Rylan in a heavy sedation and took him for a cat scan. 

We were back in the room before too long,  and it was like we had an Angel on our side because the Neuro Doc on call was none other then Rylan's doctor.  

Another thing that was on our side was that the entire seizure was caught on EEG.  After talking to a few other friends whose babies have this awful disorder, I learned that, such a catch is rare.   

So after looking at the EEG, Dr. Talwar Diagnosed Rylan with Generalized Epilepsy.

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SO basically he has them and they do not know why.    Awesome.     So since then we take EVERY precaution.  Because anything can trigger.  

Let me tell you it is SUPER fun to live life always feeling like there is doom around the corner.  

After a few days we were able to leave the hospital, and I now had to change the way I did things, for him.

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That day was the beginning of my new journey with whom I would learn to be my incredibly medically fragile child,  BUT I was gonna give him as normal a life as possible. 

But then I missed a lot of work because of his care.  I wasnt making the money I was making to keep Rylan's needs up so I let my stuff go.   I ended up not making enough money one year to file taxes.   Because of this, the case manger at Social Security called me to let me know my benefits for Rylan will be stopped,   

So let me get this straight........Im a single Mom, struggling to make ends meet for my son, so your going to take away the only help I had for him.   Awesome. 

I then had to quit school so I could work different hours that also worked with my Mom's schedule as she was helping me with him, 

Shortly after I met the Man who would become my Husband.  The man who openly wanted to take the title of Dad to Rylan. 

I still tried to work, when we moved in together.   But then Rylan ended up hospitalized with a nasty respiratory and GI infection.  Judge all you want, but I flat out refuse to leave my son alone at the hospital.  My non-verbal child.  I dont think so not gonna happen. 

But I did call in to work and supplied them with all the proper paperwork from the hospital so they knew my absence was legit. 

But I was let go shortly thereafter. 

Then Shortly after that Rylan was hospitalized with RSV

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So thats when Steven and I decided it would be best for me to just Stay Home,   since that decision we have had numerous stays in the hospital.  As well as our first looks in the ICU, 

Between Treatments, feeds, braces, appointments, it does make life easier.

When I tried to go ahead and apply for SSI again. I was denied because Steven makes too much money,   Even though his ex-wife takes all of it. 

No I am not a bitter current wife. She really does.  As of right now my husband pays 1000 dollars a month in child support for the one child him and her had.  She also gets 500 dollars of his retirement.  Believe me now?

Here is the BIG kicker.  

She claims she can not work because she is "disabled".  She gets SSI. 

But she has the ability to consistently harass Steven with court. Then Claims she is super Mom taking Amaryssa to all her cheer practices and competitions.  

That sounds like all the traits of someone capable of working if you ask me.  

Then our neighbor.  Retired Military,  Recieves VA compensation and just fought the system to get 90% disability.  Gets Military retirement. Spends his weekends at his home in Mexico. What is he doing.....getting ready to receive SSI as well. 

Then the woman formerly known as my Godmother.   She never worked because she was living on disability.   She spent her days on Facebook. trolling pages. 

Yes I know there is a difference between Supplemental Security Income, and Social Security Income. 

It just seems unfair to me that people who show they have every ability to work, live off of the government. But my Husband and I get to struggle at least until Amaryssa turns 18,  

Just seems a little unfair, 

So now I face the struggle......leave Rylan's care in the hands of others and try to work? Which will be difficult being I only have enough nursing help that covers a day and a half.  11 hours a week, 

Or Stay home and try to figure out how to get the things Rylan needs.  As a Special Family We are alone. 

Father's Day Weekend

Father's Day......the one day a year all about Dad.  

This year for Steven, Father's Day was a little more special.   He was able to spend it with BOTH of his kids.

But before I get into that, we have to start back on PT day for Rylan.

Every time we go to the Therapist, She always starts him off stretching. Makes sense as they recommend stretching before every workout.

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He was not feeling therapy at all.  Honestly I do not blame him. I NEVER want to workout.  As Danyle was putting him to a stand. he really started to give her a hard time.  When we heard one of the other therapist with another child out in the hallway,   

The little mat/bed she had Rylan on was directly in front of the door.   Suddenly Rylan laid his eyes upon a little beauty with long brown hair. Doing her therapy exercises on one of the pieces of equipment.  Suddenly Rylan's testosterone kicked in and he changed, I have grown to know Rylan and his Bipolar, hormonal ways.  Danyle has not......so needless to say watching Rylan bat his eyelashes and giggle at the little girl made for great entertainment.

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Ill be honest when I found out Rylan was going to be "special".  I never really thought that on top of all his other needs he would go through these changes just as powerful as any typical child does.  It makes for some very LOOONG days. 

When we were leaving therapy it was brought to my attention that our absolute favorite nurse was having her baby!  Yeah Ill admit I spent the majority of the day stalking her Facebook looking for updates.  

When Steven came home later that night, She had finally had an adorable baby boy.  I had to go meet him.  So the next morning Steven stayed home with Ry and I went up to meet Baby Brayden,

Isn't he soo beautiful?

As I was leaving the Hospital, I of course had to get back to work.   Because NOTHING happens the way it needs to.....I am forced to have to call Rylan's nursing agency to follow up with them about getting a new nurse since we requested the last one not come back. 

Of course they have NOTHING.  So I made them a deal they have till we get back from California 4th of July weekend to get me somebody.   

I am pretty sure NOTHING will still be the story when we get back,  So I am  gonna have to get all psycho mom to get the Job done.   Why can't they just make it easy?  Just do the job?

Saturday Morning we all woke up nice and early. Because we needed to be to the airport, before 9, because...Steven's daughter Amaryssa was coming to visit for the first time in 3 years,  3 YEARS!!!!  We missed her!

Steven tried to act all nonchalant about it. But you could tell, he was super pumped!

Rylan on the other hand........was not feeling it. (Shocker, I know). He was giving us nothing but difficulty the entire morning.

As we were leaving the house I ran straight into the kitchen table and jammed up my toes on my right foot. Awesome.

With my foot in a lot of pain, I drove us all to the airport.  We got Rylan and went in to wait.

We were sitting in one of the airport lobbys waiting for Amaryssa to come down the stairs.   It was oddly quiet.

We continued to hear the announcement the airport plays welcoming passengers, yet we saw no one.

My phone dings it was Amaryssa saying her plane landed early and she was here,

We decided we needed to look for another lobby,  as we were walking down we noticed a large group of people.  Well that is where she probably is......

We got to the lobby just as she was walking down the stairs,   Whew!

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This girl has grown.   Damn. 

Once we got her luggage we headed out.   Rylan was all good till we got home.  Then he was losing his mind.  I don't mind him being in a bad mood.  However he has this whine he does incredibly loud that hits a certain level where it rattles my nerves.  

So I suggested the pool.   Steven agreed and went to blow it up.   as we were waiting on the pool we got to see how much Amaryssa has blossomed in her dance. 

ouch!

When the pool was ready we got Rylan in which perked him up.  But the pool needed to be cleaned. It was hard to enjoy yourself when all you feel is the nastiness of sliminess on the bottom of the pool.  So we all got out quickly.   

Since that was out Amaryssa and I ran to WalMart.   

On the way back she drove my huge ass van

pardon my berry tongue

I know this may not seem like a huge deal, but she is only 16 years younger then me!  I still feel like I am 20.  So when she shows up with the ability to drive, I cried a little on the inside. I almost have to force myself to acknowledge that NOPE I am 32, with a 10 year old and 16 year old. 

Later that night Steven had to leave to take the neighbor to the ER.  Yep were all super friendly and shit, that our neighbors rely on us.

So I cooked dinner for us.  Well me.  

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They all passed out on me!  I couldn't wake them up.

Oh well Dinner was DELICIOUS, 

That leads us to Fathers Day. 

Steven was up at 5 am...Why? 

To go golfing with my Dad and Brother of course! 

I was excited because he hasn't been in so long! Why the early t-time you ask?  It was gonna be almost 110 degrees.  Get the golf done early!

While the boys golfed My Mom brought my Niece because We were gonna make a nacho buffet.  

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It was nice.  Amaryssa shared with us some of her dance routines, making Jayde fall in love.  SHe followed her everywhere.

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It was seriously so cute to watch how much she loved her.  Then it dawned on me I had a pic of them from 3 years prior.

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We had to remake it of course. 

I felt a little bad for Rylan though.  He seemed like he wanted to play with them too. But of course couldn't. So I tried to hang out with him and keep him happy

what felt like a good 6 hours later the boys came back.  We finally could eat.

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My Mom makes a mean nacho.  

Sits like a rock in the gut.....

But it is sooooo good! 

Once our Golfer Dads finished eating....it was all over.

Add caption

The rest of the family left later.  It was nice to see Steven enjoy a much deserved Father's Day,  I really wish he could have that day everyday with how hard he works. 

Later that night we had Family game night....We rocked a little Battlefield 3

To finish with some UNO!

Rylan pooped out on us!   

Needless to say it was a fun weekend,  Nice to be able to have my complete family here.   I get to learn how to be a Mom of 2 for the next month.  Learning how to be a Mom of an independent teenager who can talk back is an experience, as I am used to my Non verbal, relying on me for everything child.  

But so far its super fun.

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Manic Monday and Her Enemy Time.

I hear Rylan yell.

Open my eyes and look at time....6:30. Shit.  

Jump out of bed and go check on him.

" Good Morning Rylan!" Those Beautiful eyes look up at me and then at the television. As in "Good your here turn on a cartoon".   I miss those days when was actually excited to see me.

So I turn on "Barnyard", change his diaper, and let him know Mommy needs just a quick cup of coffee and ill be right in.

No sitting and enjoying that magical beverage for me.   I have to chug it and get him up, the time he needs his epilepsy medicine is fast approaching.

I finish my cup and start his morning routine.  He is cracking up laughing.  Good he is in a good mood.

As I am getting his shower ready, Steven wakes up.   Says Good Morning and travels outside to have that Morning smoke.  I get Rylan in the lift and into the shower,

Now Rylan's shower chair at this moment is a joke. It is unstable, has no straps to lock him in, and is quite frankly getting too small.

Yet we can't get one because the insurance companies deem it "Unnecessary".  "Why can't he be sponged bathed?"  Fucking really? I am supposed to give my adolescent child a Spongebath? Everyday???   It's like they fail to recognize that just a few years prior they paid for a damn remodel of our main bathroom to make it a handicapable for him to roll into the shower with ease? Now they want him Spongebathed?  ARGHH!!!!! He is one of few kids that get bathed EVERYDAY! I can't not bathe him........He is a boy.....hitting puberty, that wears a diaper. There is nothing that sticks to your nostrils more then the scent of "balls"....I mean seriously its gross.

I am currently on the mend of a back injury that was worsened by said "Chair".  I went to wash his back one morning and he fought back tipping the chair....so I had to play super mom and stop an accident ready to happen.

Anyways....now that I lost track of the story at hand..oops.

I got Rylan in the shower,  He of course is super excited, moving all over the place.  So I of course am freaking out trying to hold him in place and lock the wheels. Freaking out he is gonna roll right out of it.....

 Get him out and dressed and Steven assists in getting his treatment going.   I figured this would be a good time to try and go for a run with Lucy before it got too disgustingly hot outside.
As I am out with her Listening to the Alt Nation countdown on my phone, My run is going good...I am thinking what a good day this will be.   That was quickly shut down by the realization that i am huffing and puffing feeling like I am running super fast only to see my dog speed walking.... Screw that....I stopped running and walked back with her.

When I got back in it was after 8 so I put in a call to Rylan's nursing agency.  Thankfully they are sending a new nurse out this week as his current one feels any interaction with him is out of her "job description"

To confirm the nurse will be coming for sure she wants to call me back.... Ok.

Well while I drink my protein, I decide to call the lift folks and see how I need to go about getting a bigger sized sling for his lift.   Well I get to wait for a call back from them too.

 I finish my Protein shake only to run to the bathroom for the oh so glorious "Protein poop".  (don't judge you know protein makes you poop too.), then a shower.  When Low and behold my phone rings, thinking its the lift people I hurry and answer. Literally stumbling out of the bathroom trying to grab it before I miss it.    Seriously I know my Special Mom's know that when your waiting for a phone call sometimes you gotta drop what your doing and grab it...otherwise its another battle and waiting game to get a hold of anyone again.

I reach the phone in time to discover an Arizona number....not the lift people. But the nursing people.
I answer......confirmed, we meet the new nurse Thursday at 11.

Ok.....well Now I need to get my ass in the shower.  I start the shower, phone rings again.  Still not the lift people but it is an unexpected call from The Children's Clinic. Awesome we get to go in for the new elbow splints tomorrow.

I jump in the shower really quick, get dressed and...oh you guessed it....the phone rings again!

The Children's Clinic calling back because Rylan's therapist requested we stay late on Thursday and do his braces then.  Not thinking of the meet and greet I just scheduled I agree, only to realize the New nurse was coming that day and we live an hour away 9 am therapy will get me home close to 11.  so Yeah not gonna happen.  So I call back and get that rescheduled.

Today I normally try to fulfill the Laundry part of my domestic duties.   So I start that.  Steven decides it would be a good time to work on Extending Rylan's head switches.  This is when I am truly grateful to have such a handy husband.  Using the Kydex we ordered he was able to make some awesome extenders that will be able to extend even more!

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Pretty creative right?

He ran to get what he needed but forgot Velcro. 

By this time I started Rylan's arm braces, I came back remembering forgotten velcro so one of us Needs to go.  I do know it sucks to have to turn around and go back out SO I did it for him.  After all Rylan needs his talker.  

I get back home and pull into the driveway.....Phone rings again.  New DDD case manager reminding me of the meeting.   Yeah your supposed to be here in an hour and a half. I didnt forget. 

Steven switched Rylan's braces while I was gone so I had a good 20 mins to get laundry changed over.  Steven went in the garage to drill holes and I continued my Domestic duties...... I start the  new load and Steven and I put Rylan in his stander.   We grab a bite to eat and Steven decides to go back out into the garage when something stops him......

Water. Lots of water. 

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Our Laundry room was flooded and it was making its way to the kitchen.   

Now this happens when Rylan has about 5 mins left in the stander, and the DDD nurse is parked outside our house. 

I grab towels, Steven puts one towel down and realizes, that isn't gonna do Dick.  There is too much water. 

So he grabs the shop vac and starts sucking up water, meanwhile I am trying to help Steven while watching the clock and Rylan, as Well as checking the door to see if the nurse came up. The Damn Shop vac was sooo loud!

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We get the water cleaned up just in time to hear the doorbell.  

Time for the meeting. 

Steven helps get Rylan situated and fed.  I tend to the 3 women that hold Rylan's care in the palm of their hands. 

Thankfully I like all of them! 

The only thing that now leaves me uneasy, is it was suggested that because he has been hospital free for a year he goes back to school. 

Man. I am really on the fence about this one, I think he has had so much progress and been so healthy.  I am really freaking out we are gonna back track. 

They seem to think he is older and stronger and will do fine. 

*deep breath*  I guess he is gonna go back to school.  But half days to start.   

Now I am anxious about August. Yes the entire fucking month. 

He will get his eye checked out and be around nasty snot monsters.  I am unsure about both outcomes. 

Now that stuff is complete and I was able to finish my last load of laundry without a water explosion again, I feel like I can relax. 

But No Rylan wants to have a meltdown.  

Is it sad I need a drink?

All in all I felt like I really didn't do a lot today, but what I did do took fucking forever.   I seriously Can't wait to go to California to see My in laws....and the beach.   Kinda feels like it will be a much needed breather,  

But for now we get to prep for Amaryssa's return.  Till next time! 

Splashing to keep from Melting.

Rylan has been bored.  SUPER bored, and wanting to get out of the house but it has been too hot to do anything,

Its 100 degrees here.

Like seriously hot, when I watch Movies or T.V. shows I see kids enjoying Summer outside on their bikes, going to each others houses, etc etc. Not here.   The roads are empty.  The pools however....are not.

Due to his Mic-Key button I will not take him to the public pool.  I mean c'mon its an open hole to his stomach, all I can imagine is it's like him drinking the pool water and we know how clean public pool water can be.

I can't take him out on his bike without fear of a heat stroke.

We can't take him to the zoo.....again too hot.

So here we are trying to figure out what to do that won't cost an arm and leg that is in the cool indoors.  Tucson is such a "happening town",  the choices are nonexistent. I come up with the Tucson International Wildlife Museum,   That seems doable.

After some thinking though we decided to hold off on that, as Steven's Daughter Amaryssa will be here in 2 weeks.  This way we can bring her with us to enjoy it,

Then it hits me.

What if we buy a little pool?

Seriously I do not know why I did not think of that sooner.

Quite stupid I know. I am actually smacking myself for the lack of brain usage.

So off I went to good old WalMart and actually got a pool perfect for us for a good price!

As soon as I got home the fun began.

I tried to talk it up to Rylan, but he was such a grump he refused to care....I even got him ready into his swimsuit and all! 

grump

Steven and I in our excitement are like little kids........I dont care if its a tiny little blow up pool. Its a damn pool...with cool water.   We really didn't care Rylan wasn't having it.

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When the pool filled up a little we decided to get in.  We were not gonna wait. Plus I was SOOOO excited for Rylan to try out his new pool.

Pardon the bricks we are still working on our yard. =)

His unsureness was almost comical.  He seemed like he was torn from letting loose and having a ball and trying to show his displeasure for us making him enjoy something he hasn't been in.  (I know I am a horrible Mom!) I was just uneasy about pools since he got his Mic-Key. Paranoid I know!

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Before long he was having a BLAST,  Laughing and squealing!!!  I know being in water has benefits for people suffering from Cerebral Palsy.  SO seeing him move around so much and having a blast made Steven and myself soooooo happy!

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I kept the water kinda low at first....I was paranoid he would slip from our grip and go under. I know your probably thinking....If your holding him how will he go under? Well He still is an 80lb kid when 80lbs is wet and wiggling around a lot the possibility is very much there!.....but he really did great.

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It seriously makes me so happy when I can find something new to do with him that he enjoys! Steven and I worked together to sway him through the water, let him lay and feel the motion himself. I tried spinning him around as he lay on the water, and at one point he curled up next to me like he wanted to fall asleep! 

 We spent a good hour out there before we felt our energy starting to disappear.  I still gotta cook Mexican Pizzas! 

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We worked together to get him out and in the house,  Let me tell you something, My grumpy kid is no more.

The Missing Plug......and Wheels.

Sometimes you really feel the strain of a non-mobile child. Today was one of those days.

Last night, it all began.

After taking my adorable Niece to the Water Park by where I live, we took her and Rylan to my Mom's. 

Isn't she cute?

Steven and I went to grab a bite to eat really quick and went back and picked up Rylan.

Now I have the pleasure of driving a Ford Transit Wagon.   This is a Handi-Moms DREAM!  Yeah I am gloating a bit....its the first vehicle I have had where Rylan and I are Comfortable and I have plenty of room to care for him on the road.   

I have the vehicle a total of 3 months.  

Well back to my story,......we left my Mom and started driving home.   As we were driving Steven mentioned how hot the seat felt on the passenger side.   Confused I pull into a parking lot and we switch sides. Sure enough the entire ride home I felt like I had a heater full force on the back of my legs with a burning smell.  

Being the car is still under warranty, Steven suggested to take it right in.

So this morning....5:00 am I was up getting ready so I can have it to the service area by 7 in Tucson.   Sahuarita is a pretty decent drive away, Not as far as other places . But we have to go there for all of Ours and Rylan's appointments,  Most days it is not too bad.  Needless to say I get up early to account for the driving time to get up there.  It is mainly one lane each way so I try to prepare for getting behind work trucks and there are a lot of work trucks. 

As you can see we are at the bottom of the map

I head up to Ford, and get there around 7:15.  I am thinking a couple hours while they check it out.  The guy tells me nope it will be there all day. Ok.......now I start to panic.  

When will it be done?

My Husband works nights...how will I get up here?

What about Rylan?  Nobody drives a vehicle that can fit his chair?

The Service Man tells me the shuttle can take me back home.  

"to Sahuarita?" I ask

"Yes, just sign in over there"

So I do.  10 seconds later

"Jenny, we don't go down there."

"The guy said you did"

"Well we don't"

Fuck.

So I try to call my Husband. No answer. 

My Mom. No answer

Back to my Husband. No answer

Back to my Mom....yep you guessed it No answer. 

By now I am getting frustrated.  

Then low and behold Steven calls.  I tell him whats going on, and he jumps on coming to get me.  But Rylan is still sleeping.   

As we all know an epileptic child with a HORRIBLE sleeping pattern sleeping comfortably is a gift.  So I suggest to hold off waking him up and I will try and see if I can get My mom to get me and take me to her place and he can pick me up there,  

I hang up and try to call my Mom again...She answers. I tell her whats going on, so her and Jayde come to get me.  

So I call Steven back to let him know and Rylan finally woke up,  So I wait at Moms house.  

I wait for Rylan to have a bath, get dressed , treatments and a feed. Do to the fact we only have one vehicle big enough for the chair he has to carry him to the car then come back and lock up.  

Finally he tells me he is on his way, 

Then my phone rings, it's Rylan's nurse.  FUUUUUUCCCCKKKK!!!!!  She is at my house.  Great there goes some hours. FUCK! 

Steven shows up and we hurry back.  I feel absolutely terrible, I can not believe I forgot about her! I suggest her to go get coffee while we are on our way,  Guilt seriously eating me up. 

We get home and get Rylan unloaded.  I feel terrible because Steven has a herniated disk and is carrying this big 80lb kid.  

Once we get Rylan situated with the nurse, I join Steven for a drive to get his part for his "toy" car. 

On the way back I call to check on the car. Again, Steven needs to go to work, the nurse is only with us a few hours, and I need help with lifting Rylan. The Service Man tells me they thought it might have been something simple, but it wasn't. Now it has to go to another part of the shop and be looked at there. Ok....we have a while. Now I am really worried about how I am going to transfer him. I never thought his wheelchair would be so important to me. 

SO I suggest Steven dropping Rylan and I off at my Moms, and then getting somebody there to give me a ride to Ford when it was ready,  My only issue was how am I going to get him out of a big vehicle??????

The three of us head into town and grab some lunch near the car dealership.  I asked if we can stop and see the status.  She was parked where she was this morning.  I go in to see if she is good to go. As I ask, I see her drive off. Well there was my answer.

SO we bring his Special Tomato Chair with us so he can sit with my Mom in her office while she works.  We get there and all seems well......then I notice.  I forgot the backpack. The backpack with his Special formulated food, seizure meds, inhaler...everything he needs in 30 mins.   

Seriously! DAMN IT!!!!!  Of  course I have NO WAY to get home.  My Brother is at my Mom's, SO I ask if he is willing to give me a ride.  He is like "Ummmm, No". My Mom offers to let me take her car.....but she needs tags.......My luck I would get pulled over. Then My Bro offers me to take his car, Done.   

My Mom warns the air isn't that great.....I'm thinking the old van had crappy air and I survived. SO I really was not worried.   The Niece wanted to come so We loaded up and off we went. 

OH MAN.......my Mom was not kidding......His air did not work AT ALL.  It was like a blow dryer being blown in your face while outside its 107.  So in this extreme heat Jayde and I melted all the way to my House.  I feel really bad for her so I grabbed Rylan's portable fan to hook her up.

 

Seriously......it is HOT.   So we do our best to beat the heat back. Which literally seemed like forever. 

As I pull into My Mom's neighborhood, I get the GLORIOUS phone call, I can get my car.  

Apparently a BIG plug fell out, leaving a huge hole. All this ass pain for a fucking plug?   Oh and surprise surprise, they have to order the part.  SO for the next week I have a duct taped contraption in its place.  Ok.  

Well I get into Mom's house and hurry to feed Rylan who I knew was probably starving.  As well as calm my brain because he is getting his meds.  I discuss with her my need to get to Ford ASAP. 

Here comes the What to do with Rylan? She asks if I want to wait till 5, So my Dad could help.  Trust me I would have been on board but with Rylan's growth pattern he REALLY needs to get in his leg braces being its been a few days before his 6:00 treatment and feeds.  She understands so we come up with plan one. 

See is Josh will sit with Rylan and we will run up there and then I will come back and grab Rylan and everything else.  Josh was sleeping before he hit up his second job. So came plan two. 

My Mom insisted on coming to my house to help me get him unloaded.  I agree. So I pick Rylan up and put him in her car.  Which was a fun workout. (eye roll).

We get up there and I am thinking ok ill run in see the cashier and get my car and go.   As My Mom is losing gas by the second sitting with both kids in the car. All Arizona friends know when it is that hot outside you seriously have to use the air on FULL blast.   SO I tell her Ill meet her at the Fry's gas station as I needed gas and then we will go back to her house so I can grab his special chair, then take the journey home.  As it will take awhile since it is the beginning of "Rush Hour". 

I go in and she heads to Fry's.  The Cashier checks me out and tell me to wait while they grab my car which should be quick.  5 mins later, I go in and ask Expressing the urgency that My Special needs child isn't going to tolerate sitting in a car with the minor stimulation of his toddler cousin for too much longer.  It is hot.......I need to get him home. 

Again nothing.  I let my Mom know as she starts to head back over.  Then a gentleman approaches me telling me they have lost my keys and his supervisor is on it. 

Well you know the word I screamed in my brain "FUUUUUUCCCCCKKKK!!!!!!!!!!!!!"  I quit today.   

Shortly thereafter my keys were found and I got my car and head to Fry's.  

Well that was cut short as people are assholes.  It took me getting cut off when I went for a pump twice, That I said Fuck it,  

Got Rylan's stuff from my Mom's and hit up a Quick Trip.  This way I could put some gas in my Mom's tank.

Finally made it back and ignoring the strain on my lower back lifted him from my Mom's car to his chair.   Then finally to the floor for his braces.   

After today I realize how hard the journey is going to get. It bothers me that I have depend on stuff so much now that Rylan is getting huge. But I am SUPER thankful to my Mom and Husband for being there to help.    

But between the heat and driving to and from home so much. I am beat.  It may not seemed like a lot.  But it was a hard day, which I believe would have been easier should Rylan have been mobile.  But since he will never be, I gotta pull up my big girl panties and deal with days like today.

For now we are gonna finish the night with South Park,