Thursday, July 30, 2015

Popping our cozy Bubble

I LOVE Rylan's Pulmonologist.  She has NEVER in the 10 years of Rylan's existence led me wrong.

So 3 years ago, when she told me Rylan wasn't gonna last too much longer, I of course went into a panic driven, anxiety filled fog.

So we then Homebounded.  Steven and I created this germ free, safe bubble.  We stayed away from nasty little kids and sick people Everywhere we went.

It seemed to work, Rylan stayed good.

She wanted me to wean him off meds......ok.  I stayed positive my boy was good.

SO Fast forward to today I kinda felt on top of the Special Needs Mom world.  Rylan hadn't stepped foot in a hospital in a long time. His spastic muscles are under control due to my tenacious behavior of keeping him stretched.

Life is awesome.

Then we go see the Pulmonologist. You hear that sound....yep, that would be the faint sound of her stomping on our bubble.

She was impressed, Rylan was doing so well.  BUT encouraged him to be back in school.

"He needs to get sick, build his immune system" she says.


Steven is on board.  Agreeing with the fact he really does need to get that immune system up there.

So we discuss him going back to school.   If my stress were measured on a now Im hanging in the red zone.

In all agreement we figured to have him homebound for the month of August due to going under at UMC toward the end of the month and we need to keep him good.

But as I thought about it, how odd would that be?  Him coming in a month after everyone has already started.   He deserves to be there day 1 too.

So I made the very difficult choice to send him to 5th grade.

School starts Monday.

It's Thursday.

I just plopped a big ol' glop of more stress on my lap.

So Steven and I go to the school to talk with Sherry.  She has been the amazing teacher that has done all the Homebound schooling with Rylan that last 2 years.  So we built that trust.

She showed us the whole school and went over a lot of  what they do.  I made sure to cover all my concerns with her, the aide and the teacher.   Making sure there was extra emphasis on watching his health,

Steven suggested to just have Rylan go the entire day,  As half days were an option.  I like his mentality if your gonna do it.....go all in.  Meanwhile I am freaking out.

We left the school and ran to Walmart to get him his uniforms and school supplies needed.

We get home and I have a text from Sherry saying we need more paperwork and bring all the necessary documents needed to get him registered.

So we head up again.  This time its just me and the kids.

I fill out what I could and Sherry takes Rylan to introduce him to everyone,

Rylan seemed happy. That makes me happy.

By the time we leave the school I am exhausted from stressing about this transition.  I know we will see the inside of the childrens ward this year.  But when?

On the way home, my phone rings.   I am thinking its a bill collector so I was hesitant on answering.  But I did.

It was a Case Manager from United Healthcare.  What the fuck?

She is calling to see if I was satisfied with everything.

I have 6 denial letters for a bath chair because your company thinks he should be sponge bathed. No im not fucking satisfied.  If anything I think you guys suck!

As she apologizes to me for everything and wants to help, the line goes dead.  I look at my fucking decided to restart.  Are you KIDDING ME?!?!??!

Once it boots back up I go to my call log, and the number isn't there.

Yep....this shit only happens to me.

I get home and throw Rylan in his chair to feed him, get his bed made, put his leg braces on and make dinner.  

The United HealthCare Lady calls me back...not trying to help me but Trying to promote herself as an advocate.  Thanks Bitch but I got it.

I am tired. I am desperate for a break.

I know so many stay at home Mom's that love it.

I gotta be honest I dont.  I spend everyday not stopping. Don't get me wrong. I am super thankful to be able to stay home and give Rylan the care he needs.  But much like Everyone else who work for an employer...Everyone gets a vacation day or 2.

When you stay home to care for your Special Needs get nothing.  I get up ,and if I am lucky I can drink all my coffee before I get to work getting Rylan up.  This goes all the way till I go to bed.

So I am crying (not literally) but I am whining and I am tired......I WILL be a little kid stamping my feet.   I want a day....just ONE day where I reset and recharge.

I don't see that happening anytime soon.  So I shall press on.

But this has been a lot of shit lately,

All I want is a strong cocktail.  is that bad?

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