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.
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| Isn't she cute? |
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.
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| 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.
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,
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