Who's Been Pooping In My Bed?!?

My title is a quote from a lady that was in the Nut House with me.

This lady annoyed the bajeezers out of me.

I could put up with, sympathize and even almost befriend the paranoid schizo guy. I could deal with the lady that pulled her hair out and ate it. I could EVEN put up with the lady that incessantly asked me if I had a hidden cell phone in my bra. For the record I did not. :-)

This lady though.......she drove me crazier than I already was.

She was in her late 40's I would imagine. She had a knee brace on both knees and was a little bit heavy. Not huge. Short hair, glasses.

The first day I got behind her in line for meds I wanted to pull MY hair out and eat it....okay not really but wow she was annoying. She had something to say about each pill she took. Some she would argue over and then realize in the end SHE was the wrong and THEY were right. She had about TEN pills to take so this took forever. Everyone behind us was rolling their eyes and complaining.

One time at group she said Danke Shoen instead of Thank You to everyone.

Give her meds? Danke Shoen.

Let her butt you in line? Danke Shoen.

Then she got her roommate saying it.

SOMEONE KILL ME PLEASE.

I'm not sure why this annoyed me so but IT REALLY DID.

I shall call her Danke Shoen for the rest of this blog.

I had group her a few times. One day in particular we were having a good session. A patient was describing his symptoms of PTSD (he was a veteran) when Danke Shoen raised her hand. I thought wow maybe the moron actually has input and she's not just annoying. The therapist asked her what she had to add and she asked him if she could go get a piece of her candy.

*blink*

*blink*

Surely I thought this woman has not interrupted A VETERAN to ask for some candy.

The therapist said "Can you please wait until we are done with group?"

She told him her throat was dry.

Then fake coughed.

At this point I am holding back my annoyance and talking myself OUT of punching her for fear they will add anger management to my case plan and I'd be there longer.

The therapist said "Well you do have a yogurt in your hand as well as A CUP OF OJ so can you just make do until group is over?"

Danke Shoen fake coughed again and said she really needed her "Caaaaaanndy".

He said fine just go ahead.

Of course she said Danke Shoen.

Another time she left group because she said "She was just too tired......". We were like a half hour into group that ONLY lasted an hour. I was annoyed YET AGAIN because why the hell am I coming to group if we can just leave whenever we want. There were plenty of times I was there that I would have much rather been napping. I stayed though. I needed to get better.

So obviously Danke Shoen did not have many fans other than her roommate

One night we were all in line for evening meds. I had figured out to NOT get in the same line with Danke Shoen because I'd be standing there all night waiting for her to argue over her meds and beg for her CAAAANDY.

I noticed she was at the front of the line....arguing when a LARGE black man behind her yelled HURRRRY UP AND STOP ARGUING THERE ARE PEOPLE BEHIND YOU!" She turned around and told him that she had PTSD and he can't yell behind her ......he should be glad she didn't reflexively turn around and beat him up.

I giggled to myself as the orderlies separated them. I imagined her with her TWO knees braces trying to kick this large YOUNG black man's ass.

Later that night Danke Shoen pulled back her blankets to tuck herself into bed. When she pulled her blankets back there was a prize for her. Someone had shit right in the middle of her bed. Under her blankets of course in the hopes of her getting in her bed, not noticing the pile and squishing her feet in it. Danke Shoen saw it before she got in though.

She went to the desk and told them what had happened. The staff showed how much THEY were annoyed by her by NOT getting anyone to clean it up until 2 AM......you would think they would have done it quickly to get her away from the desk but they made her stay up until someone from housekeeping could come.

I hope you enjoyed my story of poo.

Danke Shoen.

So I am totally in love with Makily's Neurologist.

He is the sweetest man. The last several times we have seen him he has joked around. He remembered Makily by how she claps feet and with how much force. This kid is totally limber people. Sometimes I'm appalled and impressed at the positions she sometimes gets herself into. I will go and reposition her and she will look at me, annoyed, and wiggle RIGHT BACK into the awkward position I just changed her from. She's funny with blankets like this too. You will get her all tucked in, snug and tight and as soon as you step away she'll grin and start kicking it off. She'll have it up to her waist in no time flat. Then she'll giggle while you put it back. She'll play this game as long as you will.......or until she's craving Spongebob.....she is addicted.

I allow it though.

Call me an enabler....lol.

wow

That was a rabbit trail if I ever saw one.

ANYWAY

I love the doctor he's friendly and sweet to Makily and he also is the one that admitted the misdosing on Makily's diastat. Most doctors would have blamed everyone else and their brother or just avoided the topic altogether. Not time. He said right up front that the Nurse Practitioner had written it that day and that it was their (as in his entire office) fault and how sorry he was. wow.

Dr. El Bohy feels that we should change NOTHING right now even though Makily had a suspected seizure.

He says since the seizure did not affect her respiratory system or heart rate that it's worth the gain in progress towards walking and communication.. I agree wholeheartedly. Now if she starts having longer, more frequent or respiratory compromising seizures then we will obviously rethink this.

I'm pretty confident in this decision as Makily was totally interactive, giggly and happy today. She didn't nap ONE time. She's just overall happier.

I'm holding my breath and hoping that we have no more issues from here on out.........we'll see.

It started out to be a great day.

I got up this morning and did Makily's morning routine with her. The same routine I do every morning before school. I was on time and proud. I say that because I am HORRIBLE in the mornings. I can never find a shoe, Makily's AFO's, the last clean bib.....ugh. Half the time I can't find a bra and so I will run out of the house making sure to wear a shirt with a picture on it. Since as my friend Whitney says "It's ok to go bra less as long as your shirt has a design on it." Ever since I came home from the nut house I have been much better in the mornings and I actually am on time more than I'm not these days.

I hurriedly got both the kids strapped into their car seats and jumped in the drivers seat. I glanced down at the clock. 7:31 AM. Damnitt I think. I can make up the one minute so long as we hit ZERO traffic. The windshield wipes squeaked loudly. You know the squeak they make when your windshield is not quite wet or dry? Makily BELLY laughed each time it squeaked and I clicked them on and off to watch her laugh over and over. It made me happy.

I got to the school, one minute late but since it was raining the buses were slow so thankfully they were still out waiting for us. I dropped off both the kids at school and went home. My friends Justin and Trish called and asked if I wanted to hang out this morning. I drove over to their house and we had some of the funniest conversations. We laughed and joked about all kinds of things. It was a relaxing happy moment. My phone rang at one point and I said "Ugh I hate it when my phone rings and Kily is at school, makes me nervous every time."

I went and picked Jakob up from school and took him grocery shopping. He was such a good boy and even helped me check out each item at the self checker. I stopped to get him a Happy Meal at Burger King and we headed home.

Halfway to the house my phone rang. I got anxious but when I picked it up and saw it was the school my heart jumped into my throat. I answered hoping and imagining it was just going to be a question about paperwork or a reminder to bring wipes to school. Instead it was someone asking for Makily's mom. She said Makily is having a seizure.

The world stopped.

I hung up and threw the phone and immediately turned the car around.

I went from completely calm to panic attack in about two seconds.

I turned my hazards on while I cried and began dialing Allen.

No answer.

I called again....no answer.

All the while I'm shaking and trying to drive.

I called my niece Tara and said "Tara Makily is having a seizure please call Allen, I've been trying and he is not answering and I can't have a panic attack, drive and call anyone else." Tara said she would call him immediately and let him know.

At a stop light I sobbed, all the sudden I hear Jakob's angelic voice say "Makily why cry?". He repeated it several times and I just had nothing for him. I couldn't answer him....looking at his sweet face broke my heart. I could see the fear in his young eyes and I hated Emanuel Syndrome again in that moment for scaring not only me but my baby. When we got to the school I have never seen Jakob move out of the car so quickly. I threw him on my hip and ran. Typically he would have complained and yelled "Mommy I WALK", but he knew something was wrong and again started saying "Makily why cry Mommy."

When I walked into the class room someone took Jakob and I walked over to Makily laying on the floor being assessed by the paramedics. Her eyes were not her own but she had already come out of the seizure and was moving around. There was some concern about her oxygen saturations and because of that I opted to have her go to the ER just in case. The last time this happened Jakob's teacher kept him until someone else could pick him up so I could ride on the ambulance with Makily.

I asked if that was okay to do again when the woman in charge said that "Due to their special staffing circumstances that it was not possible." Makily's teacher piped up and said well he could just stay in this room with us and we will watch him. Again the woman in charge said "We are just too short staffed." I wondered how hard it could be for a school with two pre k classes to keep ONE Jakob (although HE IS a handful. lol). I looked at her and said that's fine I will just figure it out. She then explained that I could ride in my car behind Makily. I told her I knew that but there's a difference. Either way I got it. A few moments later as I was leaving she said she worked it out and they could keep Jakob. I thanked her.

When we got to the hospital Makily was acting like her normal self. Her temperature was low and her oxygen sats were still in question. They couldn't figure out if she truly was satting low or if the probes were just bad. I, for obvious reasons was not comfortable leaving without knowing which.

The ER doctor called Makily's Neurologist and at this point we are going to do nothing.

This seizure was different than the last. She just went totally limp, her pupils became fixed adn dilated and she was unresponsive. It lasted about two minutes and they were just laying her down for a nap when it happened. So she wasn't overstimulated.

I don't know what we will end up deciding or doing when we see Neuro on Wednesday. Part of me wants to wing it and keep doing what we are doing now and if we have to deal with a seizure every six months then so be it. I am so proud of the progress Makily's made in just the three weeks she has been off the meds. We got this note home from school just TWO weeks off the Keppra.


I just can't imagine putting her back on a second medication when the last one drugged her up so much. She was regressing and not making progress and now I see how bright eyed she is and we are seeing progress again. I hate that I have to make decisions like these.

I don't know what to do.

Thanks For the Doggie Biscuits.

So Allen and I are horrible neighbors.

We don't associate with any of them.

I sorta know the old guy catty corner to us but we just wave at each other.

There is another old man that sits on his walker down the street and waves. He is always outside on his walker.

I bet he's bored....anyway....

Jakob plays outside all the time.

My neighbor behind us came over the other day with a variety of things from my yard. I'm immediately embarrassed as she tells me she found all of those things in HER yard.

Someone threw them over the fence.

I start apologizing and saying I will take care of it and make sure it doesn't happen again. She then tells me that it hadn't happened before and she thought it may have involved other kids in our yard....the day before we had friends over with their kids so it was possible. I thanked her and apologized again and she went home.

Yesterday she shows up at my door with her two year old on her hip and a bag of doggie biscuits. I'm in sweats and a t-shirt with glitter on my face from having had my makeup done by Trishtwo the night before for her portfolio (she's a makeup artist). I'm just disheveled.

Portfolio costume makeup by Trishtwo. I'm a devil.


She tells me that she coupons and got an entire case of doggie biscuits for free and so she brought us a bag. I realize at this point she is trying to make friends. I took the doggie treats and thanked her. Jakob then comes barrelling to the door screaming with SallyWaWa on his heels barking away. He runs into me throws up his arms saying MOMMY I UP...I UP! I pick him up as the neighbor lady is discussing how to coupon and bla bla bla all the while Jakob is reaching over me to ring the door bell. If I didn't let him ring it he fought me more and made me look like EVEN more of an idiot to this nice doggie biscuit bearing neighbor.

Each time he'd ring the bell he would hysterically laugh and say "Mommy I bell".

Someone kill me now please.

The lady continued to talk while Jakob and I did the doorbell shuffle. The entire time her little boy was perched perfectly on her tiny hip, quietly holding his sippy cup.

I remember thinking this lady must think WE ARE FREAKING NUTS.

I told her I would try to stop by one day for coffee and we could chat and she could show me how to coupon.

She said coffee gives her acid reflux.

I think she changed her mind about making friends.

Ha.

Learning How Not To Strangle The K-Mart Check Out Lady.

So one thing that has been helped NOTICEABLY since I got out of the nut house is my temper.

It does not flare up nearly as much as it used to and I am much calmer about things when I do get pissed off.

I won't say that before I was tyrant or anything but when someone ESPECIALLY someone in customer service would piss me off (because they were lazy or just didn't want to do their job) I would lose my shit and not care who was around.

I went to K-Mart a few weeks ago. I am slowly redecorating the house right now and they were having a sale "ALL HOME DECOR 50% off".

So to me that means well.....ALL HOME DECOR is 50% off.

Yes I K-MART decorate my house and I AM PROUD.


I picked up several pics for the walls, decorative pillows and a really cool matching mirror set. I had a few other things and they were all home decor BUT I know how K Mart can be sometimes. I knew I'd get up there and this or that would be marked full price. So I just decided I'd have the cashier price check the items that I knew would be questionable.



Of course there are like two cashiers working and full lines so I wait forever to get checked out. Those that know me KNOW I am not patient person although I AM WORKING ON IT so I was already a little irritated with the wait.

I always get behind the person that says YES.

When I got to the front of the line I had all the items I wanted price checked together. I put them on the counter and said:

"These should all be on the 50% off sale but I just wanted you to double check they are truly on sale because I know sometimes it doesn't ring up right."

She looks at me....annoyed....and says "Didn't you price check these yourself using our in store scanners?"



*blink*

*blink*

My first thought and answer WOULD HAVE BEEN:

"No you DUMB ASS, I did not. Had I done so WHY THE F*CK would I have gotten all these items into a pile together and then asked you to do it? FURTHERMORE, YOU are the cashier I AM THE CUSTOMER, will it kill you to scan FIVE items and tell me the freaking price so I know they are on sale....ISN'T THIS YOUR JOB....WAIT A MINUTE did I accidentally go to a SELF CHECK OUT LANE.....is this my mistake?....NO WAIT...IT'S YOURS....price check the items asshole."


Instead of going off on that tangent LIKE I REALLLLLLY wanted to I said this:

"No ma'am I didn't see any self checkers in the store and......."

She cuts me off and says

"Well THEY ARE ALLL OVER the store."


*blink*

HUGE SIGH

She's really trying me now. Basically saying I'm blind or just a plain lazy idiot for not scanning MY OWN items IN THE STORE...WHEN SHE IS THE PAID CASHIER.

l
sigh

I just said "Well I don't see any...."

Then she cuts me off AGAIN and says that she isn't supposed to price check my stuff because they are on a timer and it takes too long to price check.

I pause for a moment to do this in my head.....



I ooked at her and envisioned JERKING her out from behind the cash register and QUICKLY scanning the items myself to show her how fast it can be done.

BUT AGAIN.....I still had a shred of restraint and said...

"Well what if a customer is like me and does not know this rule....and let's face it......not many are going to know it......are they just OUT OF LUCK AND FORCED to buy something at full price that should be on sale....I'm sure you have elderly people that come here that don't even know how to USE the self checkers throughout the store.......much less see them."

Then she said that she was going to do it for me this time (how effin kind of her, she's doing her job for ME this time) ....and would you believe that two of the items rang up full price?

When I argued and said "Aren't all home decor items on sale?" She just looked at me and said YES. I said "Well isn't that wall picture HOME DECOR?" She said YES and then just stared at me.

I asked why it was ringing up higher she just said it must NOT be on sale.

I told her I didn't want it and got the rest of my items and left the store.

I'm trying to change....really trying but sometimes people really know how to make it difficult.



*BTW I realize there is a paragraph that is a link to one of my pics and I can't figure out how to get rid of it....so I left it there. SORRY!*

Is this what numb feels like?

I have found that if I take my meds later in the day then usual, I typically have more emotional moments.

In fact if I'm crying, typically the first thing I think is "Have I taken my meds yet?"

Today the answer was "Whoops...NO."

This morning I was driving home and it seemed as if every song on the radio knew how I felt.

I'd change the station and THERE it would be again.

It's like it was chasing me.

So I listened to the music that reminds me of the things that make me sad.

I cried....wondered if I took my meds.....realized I had not.

So then I cried little more.

I wonder if these meds are just numbing the pain I have or if I really am getting better?

Has the medication just put a huge band aid on a wound that will never heal? Like a shot of Lidocaine, it burns like a bitch at first but then your numb.

At times I feel like I NEED to cry but I just CAN'T which is a bizarre feeling.

I guess it doesn't matter either way because all I know is that for the most part, I'm happier than I have been in YEARS.

The thought of going back to the dark place I was in is JUST NOT an option for me.

I won't let myself slip that far down again.

Awakenings.

The last two weeks I have watched Makily's eyes become brighter and she is smiling all the time.

It's funny that in the beginning all her weird quirky movements would have made me uneasy for fear someone would stare at her. And now, nearly eight years later, here I sit still writing in this blog....watching her rock and shake and grin wildly and it makes my heart soar because all these things mean Makily is happy.

That's all I want and need.

I've said so many times I just want to see Makily dance on stage in a tutu.

My Prima Ballerina.

She's sure got the legs for it. Long, thin, dancer legs. Each time someone comments on her ballerina legs inside I am cringing. Wishing they were legs that she would leap and jump gracefully with.

Then today....really just now as I am writing this I realize that dancing in a freaking tutu may be awesome. But how can that EVER.....EVER compare to what she can do and on top of that what she does without even being able to speak? My kid's videos and blog has comforted more people than I will ever probably know. THAT'S HUGE. That's humbling in ways that I can't even begin to express with words. I don't feel like I am "great" enough to have this blessing (and yes in sad times...this curse) bestowed on me. I'm just me....I obviously can do this but doing this nearly drove me crazy.

She though...she is a ray of light. She is the one thing on this earth that I can hold in my arms and just "be" with and in that moment EVERYTHING is alright. Nothing exists except she and I. It's like Xanax.......but without the side effects.

According to the doctors and statistics, Makily should have been miscarried, stillborn or died soon after she was born. The pulmonary hypertension SHOULD have and nearly did kill her. The overdose when she was six months old, I thought for sure that was it. Then the fucking seizure.......that's the closest I have felt....closest I have gone in my head to her actually dying.

All those things, and here she is sitting next to me in her chair, watching Fairly Odd Parents and grinning at me. That's a hero. THAT is strength. She is perfection........Makily will always be spiritually PERFECT. What more could I ask for?

Is it hard? Yes.

Would I have chosen this for her? Never, but Makily's journey on this earth is more powerful than most. She has these old eyes. She looks like she has been here before. Like she knows something I don't. Like she understands why her Mother is crazy....and she forgives me for it because she understands.

That sounds crazy. Maybe I am. Maybe IT is.

I've watched her in the last several days "awaken" from the haze of TWO seizure meds. We've nearly gotten her weaned off the Keppra and she is brighter, happier and much more engaging. I look at her and my heart swells I'm so proud. I'm so lucky she is still here. Science says I shouldnt have had her for this long.

Makily is showing them.

You keep showing them my girl.

Love Forever
Mommy.

It's always an adventure with ME.

I saw Kelly Clarkson last night.

IT. WAS. AMAZING.

Worth every single penny we paid for the tickets and headache it was getting there.

I had google mapped the directions. I have GPS on my phone but last time I used it, it got me really lost and then lost signal and I was on I-4 during like rush hour traffic. I figured we would use the GOOGLE map directions and my GPS only as a backup.



We drive for TWO hours and according to the google directions we should have been arriving at any moment. We realized something was up because streets and places weren't matching up at all. For a few minutes I actually thought I had pulled up THE WRONG VENUE address. I was none too pleased. Finally we realize I had the right address but GOOGLE MAPS had it wrong and at this point we were an hour away and the concert started in 30 minutes.

I almost cried.

I have this awful car quirk.

If I am going on a car trip, if the trip should take two hours but for whatever reason it takes longer I start getting anxious at two hours and one minute. I never mentioned this to the shrink but it's annoying and weird. So I was driving in the dark on a HUGE interstate highway in a city I know nothing about an hour away from the concert that starts in 30 minutes that I paid an arm and a leg for the tickets for. To top it off I am going to be in the FRIGGIN car a additional hour. I wanted to bludgeon (okay beat...bludgeon could be a bit much) the person who had screwed up the Google directions. I kept my cool though. I did not have a hissy fit although I was on the verge of it.

We FINALLY get to the venue, park and rush inside to find that the opening act had just finished and we had NOT missed ANY of Kelly.

PHEW!

I immediately was in a better mood.

We walked down to get into our seats and the farther to to the front we went the more surreal it became. I kept looking at Trishtwo going WOW this is for real. We got to our seats and neither one of us had any words. We both just kept looking around with really goofy grins on our faces.

Don't mind my sweat!


We made fast friends with the people around us. (minus the lady described farther down) lol

We were less than 6 feet from the stage.

We went to the bar and both ordered Rum and Cherry Cokes. I didn't want to get plowed like the lady behind us.

She kept screaming a mixture of the following:

1. AHHHHH I LOVE YOU KELLY

2. I LOVE YOUR MICROPHONE KELLY

3. YOUR GORGEOUS

4. YOUR DOING A GREAT JOB

5. YOU SING MY LIFE KELLY

6. I LOVE YOUR MICROPHONE STAND.

Then she would do some Indian sounding yell. She was toasted out of her mind and her husband was trying to keep her STANDING up. Finally they ended up leaving before the concert was even over.

She sounds AMAZING live. Just as good as she sounds if not better than on the radio. She doesn't have a bunch of dancers or terribly intricate stage sets but they were still really cool. I liked how it is just HER and her beautiful voice. She's really cute in person too.



She sang all my favorites and some of them she did a faster or slower version of and they all sounded great.



When the concert was over we got a sackful of Krystals (don't judge) and spent the night at a hotel. How fun!

We drove home this morning and I have to say the last week has been so good for us. For me. For Makily. For all of us. I just hope things continue looking up.

This was the song that was my favorite from last night. So beautiful and sad at the same time.



More pics below.