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.