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.

Fuck.

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 meter...by 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 phone.......it 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 kiddo...you 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?

I Wear Stress for my Summer.

Deep breaths.......it wont be too bad.

I step onto the scale.

I look down.

Well this sucks.

How could I have let this happen?

Stress,  Thats how.

I stress in the morning, noon and night.

I stress about Rylan, why is he waking up crying? Seizures?  Why is he twitching in his sleep???  Seizures???  Why is he staring off into space?????  Why is he so tired???

I even Stress about Steven.

I stress about the situation with his ex wife and all the motions we still need to file against her.

Yep.   That is why I got fat.

I go through stages of liking who I see in the mirror and days when I don't.   Such a silly cycle of life.

Yes I do what I can to try and work it off......

Here lately Rylan has had the sleeping schedule of a newborn.  So on an average week I am running on NO sleep.

Steven always tells me "You do not HAVE to get up every time he makes a noise"

Yeah yeah I do.

I wake up when a damn mouse farts how am I, in good conscience going to just lay in bed without checking on him,

UGH!

Plus side is Amaryssa's presence has helped me keep my mind off the 50 million things I stress about daily. I will admit it has been nice to have someone to talk to everyday.

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Due to the fact I do not remember what life was like prior to stressing about everything. I have been working on ways to control it.  Such as pouring myself into my piano. Telling you, it does wonders,  Amaryssa even asked to learn....I would like to think I "Inspired" such fantastic thoughts.

This last Friday when I went to check the mail the was a letter from the school district.  I normally dont open them as typically they are something totally useless to me.  I don't know what got me to open it, but I am glad I did,  Reading the letter sent I learned Rylan's school starts earlier then I thought,  2 weeks earlier. 

Stress!!! 

2 weeks......We don't even see who we need to see for Rylan to be Homebound again, Until the end of July,   School starts that Monday.  If I don't get the letter early enough and over to the District office in time......I may have a lot of difficulty keeping him Homebound. 

Steven and I discussed the possibility of Rylan doing half days.  However if we do so he is going to be super compromised for when he has to go under for his eye evaluation Mid August.  You know the one I am STRESSing about?

This Summer though was super fun.   I would like to think this is the summer of Family,  

Over 4th of July weekend we traveled up to Murrieta, CA.  To see my In-laws,

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Whenever we take a long trip Rylan sits in an actual seat in the car, not his wheelchair.  Due to his good trunk support this is possible.  

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We do try and make it as comfy as possible too. 

Having him sit up in a seat helps as well because it allows me to crawl back and do his feeds on the road.  Let me tell you something...nothing and I mean absolutely NOTHING tests your coordination like trying to pour liquid into a tube while not spilling it everywhere, when you are on the road. 

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6-7 hours later we arrived.   This was our first time seeing the new house since they moved.  Steven and I were beyond happy they are now in a one story.  Not only for them but for us and Rylan too!

In the main bathroom, they have a safety tub.   Steven and I thought this tub was going to be epic.   We thought it was a dream, we would be able to bathe Rylan with ease,

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This tub was a fucking nightmare. 

The morning after we arrived we tried to bathe him.  Trying to get him in wasn't a treat.  as there wasn't a lot of room.  We got him in, then due to the lack of space, Steven tried to bathe him by leaning over the tub. 

This was hard as there was no where to lean his head to wash his hair.  SO we had to work around that....then as Steven was done and went to get him out, I see Rylan slip down fast.  My heart went into my throat.  Thankfully Steven still has some quick reflexes and grabbed him before Rylan got seriously hurt. 

So the next morning I stood in with him.  Got my clothes drenched.  But there was no potential accidents.  

You gotta do what you gotta do right?  

While in California we took over the house.  Rylan's medical equipment was everywhere. Not to mention the constant moving of furniture to accommodate his chair.

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It was fun.....and I am not gonna lie. Steven and I fell in LOVE with Murrieta.

On 4th of July, we went to the March Air Museum.  What a great way to celebrate our country by learning a little but of history right??

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Then we got back we enjoyed a wonderful family Bar-B-Que. 

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Rylan's gotta have some too!!!! 

We went home the next day.   But it really was an enjoyable trip.  Since Having Rylan in school at home, it has been nice to do these trips with less anxiety over his health. 

Since getting back from California, Steven and I enrolled Amaryssa into dance.  We thought it would be beneficial for her to work on a skill while she is out here.  She is super talented and we are hoping she could work on it enough to get a potential scholarship for school after she graduates. 

Waiting for dance to get out

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It is just sad though because she is robbed of doing the things she loves because of her Mom.   you know that 1000 dollars a month I mentioned before that my husband pays for child support???  She can't take any dance classes, was told she can't do cheer anymore.....oh and We had to buy her clothes because she doesnt have any that fit. 

Because of this and the lack of support to help set her up for her future led Steven and I to start considering fighting for custody.  

Meanwhile while we add this Stress, I am still Stressing that we can not afford the bath chair we desperately need for Rylan. 

Steven was diagnosed with a form of PTSD from his time in the service, so needless to say with all the added stress between us,  I gotta be careful around him, and not contribute to an "episode".

He was getting help....so that makes it a little easier. 

This article is literally just scratching the surface of the Shit show that has been my life here lately. 

The last time I mentioned a little of what has been going on to a friend......he bought me a shot.  

I look at the calendar now, and see the moment of truth about Rylan's eye is around the corner and I am scared. 

A couple of weeks ago when one of the many talented ladies I know agreed to do some family portraits.  I scheduled for just my household as we had a family portrait above the couch of Rylan, Steven and I. Since Amaryssa was here we could finally get a full family one.   When I told my Mom she wanted to jump on board.  

Hey why not?  The last time she had pictures done with us, I believe I was 16.  Now she has a son in law and Grandchildren.  I let my friend know and she was ok with the extra people.  I can tell you.....Mrs. Hoishman does great work.

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All in all I feel like eventually the storm will calm.  I will calm. 

I may or may not be skinny again. I have to learn to love myself.  

But until then I am thankful to have my family to talk to and drink with....because I do have a pretty awesome family.