Today is today... How to not freak the heck out, all of the time...

Today is today.

In light of a recent change in the wonderful state of Indiana's Medicaid Rules, as of Jaspers next recertification for his nursing hours, he will no longer be able to attend public school with his nurse.  The new rules state that the school is responsible for providing "adequate" nursing supervision.

Ok, so what that means for us is that the teacher will have to take care of his feeding and toileting needs.  As some of you know, Jasper eats by a g-tube.  He does eat some by mouth, but I just do not let very many people feed him because of how risky it is if you do not know what you are doing.  So, back to the g-tube feedings.  It is administered by a pump and not really that big of deal if you know what you are doing.  IF YOU KNOW WHAT YOU ARE DOING!!!!!!! If you don't, and you just so happen to leave the feeding pump stuff attached to his belly and let him out of his chair and he POPS his feeding tube out of his belly you are left with a hole that needs to be immediately replaced with either a temporary tube or a real tube.   Again, this is not a big deal for me or a nurse to do.  So heres the deal, teacher and school nurses are not allowed to do that.  Which I agree with, but what that leaves them doing is calling me to drive 30 minutes to his school and then have to take him to Riley to have a new one put in SURGICALLY, in the event that his hole has closed.  Awesome.  So his tube could get caught on something and get tugged out of his little tummy at any time of the day and no one in their building would have the rights to put it back in.  Sure, I would love to leave my kid there with no private nurse.  Nope.

Oh, hows about I get started on the fact that he is non-verbal and I would NEVER IN A MILLION YEARS leave my Jasper in a situation where I do not know that he is being taken care of.  Its not that I don't trust the schools have his best interest at heart, I know the teachers do.  But how can one teacher, and 2-3 teachers aides adequately take care of him in the case of emergency or in countless other situations and tend to the other students.  He needs one on one care.  Not quite fair to any of the parties involved.  

So, Teacher Friends(special needs or not), tell me your thoughts on this.  Would you want to have the liability and responsibility of dealing with this?  His current emergency plans revolve around his nurse carrying him or getting him in his wheelchair.  She does all his diapering needs, helps with all of the chair transitions and helps him use his walker.  He has to have hands on assistance use his walker.  He does a great job with the walker, but he is not steady all the time and even on my watch has fallen.   How can we ask a teacher to also be a nurse?  I refuse.

With all that, what I am left with is the need for solutions.  I was a little pissy about all this yesterday to say the least.  I am sure I could write a lovely letter to the lawmakers, but I could also write one to Santa asking for a new Mini Van (a Toyota, 2014, 7 passenger with leather seats).  Then I realized that today is just today.  I can look up all I want about homeschooling, playgroups, and trying to fix all my problems as fast as possible, but I don't have to do it all today.  I can not do it all today.  Probably not even tomorrow.  But it will get done, and I can make it work.  I can make anything work.  I just may need chocolate, time to go kill a spin bike at the gym and possibly Channing Tatum dancing in my living room.  Life will go on and its really not that big of a deal, just an annoyance.  I want to freak the heck out and cuss (a lot), and be mad at the assholes that think this is a good idea.  But I won't.  Whats the use??  This is about money to them, not about my child or what is best for him, his teachers and peers.  Money.   So I have to take it in my hands to do what is best for him and just hope that they see the light eventually.  Or get an STD.  A bad one.

Oh, so I just had to relay all of this to Ryan by phone.  That was super awesome.  I love him.

Ok, I should switch to something less crappy.

Ryan comes home in less than a month.
This secret unnamed baby comes out shortly after that.

Maybe I will elaborate on why I did not want to talk about being pregnant in a few days. Maybe.

Heres a cute pic to lighten this bitchfest up...

Woo, sorry that was a wordy one.  Yikes.

How to Be Away- Part 2, Tempe's Birthday

Just a warning, in the event that you don't know how hard my little girl worked to stay alive, talking about it for me sucks. A lot.  It's amazing and phenomenal, but Sept 28, 2010 was the start of the scariest time I have ever had in my life.   Given Jaspers crazy history, that is really saying a lot.  So even seeing that the date is approaching brings back snapshots of that time.

For me her birthday is a celebration that she did not die.  Yes she had a stroke, and a lot of other scary stuff, but I celebrate that she can walk, talk, and all the other amazing things she does everyday.  Her birthday is a celebration that I never stopped knowing that she was going to be one of the greatest teachers that my life would hand me.  I knew that she was gong to be the cheerleader that she is for Jasper.  I knew that she would love with a heart that is unstoppable.  I knew that she would light up every time she sees my mom.  I knew that she would be musical and love to dance and shake her little blonde hair around.  I knew she would live.  I knew she would live.  I knew she would change my life.

Tempe is ECMO baby at Riley Childrens Hospital #693.  There are a few ECMO nurses and her flight nurse Sara that I thank everyday for getting me and her through that time.  I can only hope that know know how eternally thankful I am for them and what they do.  Especially Sara and Dr. Moore.  If you don't know what ECMO is, just know that it is scary.  Scary, and what they used to give her heart and lungs a break after her lung pooped out and heart was not very happy either.  It let her heart and lungs rest so that she could come back to me and change my life.

So its pretty sucky that I am out of town on her third birthday.  Ok, its really sucky.  I am sitting in a hotel room silently crying my eyes out.  I know I am here to better the lives of my entire family, but I am not quite at as good as traveling as Ryan is.  I know it is hard on him too, but it is what we do to give our kids the best life possible.  I trust that my mom is going to give her a fantastic day filled with candy and cake and presents and that she will be pumped to go next Sunday  to Jumping Joeys in Bloomington and have a little birthday party, but I just want to kiss her face today.   Right now.  About a million times.

My Future Dr. Thompson

(that really is what she wants you to call her when you play doctor, no joke)

So, it is possible that I am going to be a mess ALL DAY Saturday.  I just cant help it.  There is no reference  on line on how to be out of town on your kids birthday.  Or how to not weep like a giant hormonal mess at the sight of her picture all day long. 

I still hope to get through all the emails that my friends sent to us when she was at Riley.  I started one day to read her a few but couldnt do it.  I have them safely put up so that one day when she she is old enough to understand how many of my friends and a whole lot of strangers prayed that she would live, I can read them with her.  That may be one of the most precious gifts I have ever been blessed with and all because of a post on the blog I had for at the time and through Facebook.  

Ok, I have to sleep so I will not be a crying, sleep deprived B..... in the morning.  Well, I can try.  Oh, if this is more poorly written than normal, get over it,  I already told you I'm a weepy mess.  

How to be away... Part 1 Why

If you have been with our family when we travel ...
A. Sorry
B. You already know that its chaos. Chaos plus a enough stuff to fill a U-Haul.

Going anywhere with Jasper requires an empty van,  a lot of stuff and planning.  I own almost every Thirty-One bag possible and use most of then to go on even the smallest of trips.  It could be a one day trip or a 5 day trip and we still have to take the entire house.  The extra days only mean extra food supplies and clothes.

So, packing only myself for this trip out to California for ABM Basic Training Segment 2 was very confusing and easy.  The first time I came out here it was not easy. I was too worried about what to bring and afraid to look sloppy that I over packed, big time.  So when I arrived at the hotel yesterday and had to unpack, and was done in just a few minutes I was a little sad.  Even though its a giant pain the rear and difficult to travel with Jasper, I want the little turkey here.  I even want Tempe here.  She is 100 shades of crazy right now, but oh my is it fun.  She told me I had to take a bus to California because she did not want me to take a plane with wings, she wanted me to take a bus with wheels.  Why?  So I can sing Wheels on the Bus, of course.

In Ft Wayne after ABM 

I know that I am out here for him, to learn as much as I can so I can do ABM with him at home so that we don't have to make our monthly trips to Ft. Wayne.   But that is IMPOSSIBLE to explain to him and Tempe at this point.  All they know is that mommy is gone.  Even though my mom is there to sufficiently overfeed Tempe and Tammy and I have asked for people to come help my mom with all the lifting and daily craziness, all Jasper knows is that Mommy (and Daddy) are not there.

Tammy, Jaspers nurse of over 2 years, told me about how arriving at school went and I almost wanted to drop it all and go home.  I know that I cant, but damn, I want to.  We have a normal routine that consists of hopping in the car around 7:15, cruising through Starbucks, driving 30 miles north, unloading his walker, unloading the wheelchair with all the stuff needed for the day, and then I help Jasper use his walker to go up the ramp for school.  Once we get up there, he hugs me and I go back to the car, he heads in to the building and stops to look out the door to watch me drive around the circle.  Well, none of that happened yesterday, boy did it throw him off.  I HATE THAT!!!  I need to clone myself.  Hurting that boys feelings is quite possibly the worst thing in the world.  Really, it is.  Making Jasper cry is like kicking your grandma in the face, you just don't  do it.  There is no way explain it to him.  Not really.  Ryan was on Skype the other day for the first time and Jasper about went nuts!  He was so excited that I had trouble getting him to sleep.  Explaining why I am out here to a deaf five year old, with minimal communication skills is impossible.  Explaining why daddy does what he does is impossible.  We just have to do it and hope that one day we will sit down at our kitchen table when he is in his 20's and talk(or sign) about all this like it is was nothing.

In some aspects it is nothing.  We don't think twice about doing anything it takes to make his life better. To give him every opportunity to be the Jasper he wants to be.  Not the Jasper I want, or Ryan wants.  The Jasper he wants to be.  That one was a hard one to learn.  For us that means Ryan is gone a lot, and  I have to do my best to hold down the fort and manage the circus.

I guess if i found my magical, mythical handbook and referenced "how to be away", it would just tell me to..
A.  Plan, plan, plan
B.  Organize things for the people doing your job while you am gone
C.  Suck it up, buttercup.  Its what you have to do and you know it.

More from my adventures in Cali in a day or so....

The Notebook Cry and Breaking the Rules

I tried to not get too detailed yesterday about the spiral of craziness that happened from the possibility of change.  Lets just say it was ugly. Like watching The Notebook ugly.  

Tuesday took a stand and told Monday to get screwed.  Finally.  I could not have made it through two days of "The Notebook Cry".  If you are not familiar with "The Notebook Cry", watch the movie.  You cry at least five times until you are snorting to breathe and the TV is blurry.  It just so happens that I watched that stupid movie on Saturday night and convulsed for 45 minutes.  

I am going to make this short, happy and sweet.  Jasper, my reluctant communicator, signed "more, please" tonight at dinner.  Remember back to yesterday when I said his educators think I am delusional?  Well, HA! I have it on video and I plan to show it to the dang world.  I AM NOT CRAZY!!!! Shut up Brandy, I know I am a little crazy.  It works for me so why change a good thing.  

So the set up.  We are at Olive Garden in Ft Wayne, he wants some of his Nurse Tammy's coke.  I HATE POP, but I might even give him things more awful than Coke if he would start signing more.  Ok, not like booze or Meth, more like Big Red or Mt. Dew.  Still awful, but tolerable in some circles.  Just not mine. Those drinks are in a class with Shoes with cartoons, temporary tattoos, McDonalds and sweat or pajama pants in public.  The classic Tessa no-no's.  Would I compromise on my hard and fast rules on those things if it would make him communicate?? HELL YES.  So, Coke, you win and thank you.  

WATCH THIS LINK RIGHT NOW!!!!!!!

http://youtu.be/7lGqSm-ZBLw

With all that said, we made it another day.  I should probably celebrate but eating Olive Gardens pumpkin cheesecake.  Oh, I already did.

Today Sucked and I can't find my handbook. You know, the one that tells me how the hell I am supposed to be a mom. The mom to my dear Jasper. Most of you reading this know about Jasper and the journey that has brought us to actually make it 5 years, with no blanking, blanking handbook. No solid direction, just a gut feeling and a lot of exploring. I guess this is going to be my way of writing my own very special "how to raise and kid that is not like all the other kids". Not a super cool hipster kid, a kid that is different because of some crappy accident at birth, or a stroke or whatever it is that makes them not fit with the class. There are all sorts of book on different special needs, but there are no books for Jasper. It is funny how many people tell I should write a book. Even more funny if they really know how awful my grammar and writing skills truly are. But after today, I realized that I need to write so that the are other moms and dads of super blanking awesome kids with special needs that feel as alone as I do that maybe they will know that they are not alone. That Ryan and I live our entire life trying to find a way to make it easier. Easier for Jasper, easier for ourselves, and easier for the next in line trying to figure out which way is up and who to fight with to make a difference in your kids life. The fight is never-ending. And it sucks. A lot. I could write one thousand things today, but for now I will just stick to why today sucked. Today sucked because you never know who thinks your crazy. Having a kid that is non verbal is a tricky deal. I get him, but very few other people do and I am pretty sure he likes it this way because he will do things for me at home and REFUSE to do them at school. So... they all think I am crazy. Crazy and that mom that thinks that their kid is smarter than he really is. No really, he is smart, and I may be crazy, but he is smart. So where do you put a kid in public school that is deaf, has CP and is just now learning to learn? Well, it looks like he does not know enough sign and be on the same intellectual level as the other kindergartners so needs to move schools again where he will be in a classroom where there is not the same level of sign instruction. SO HOW IS HE GOING TO LEARN SIGN......?????? ARG!! I want to rant on and gripe more, but my brain is toast. I also want a chicken pot pie from Bloomingfoods, my husband home so we can cry together and Channing Tatum doing the Magic Mike dance in my living room. Not all at once, that would be a mess. More later when I can quit crying.