Wednesday, October 30, 2013

Care of the health

After seeing several posts about socialism and communism, I am a little sickened.  My school health insurance doesn't cover half of Libby's ever increasing needs. After going through our annual review with special needs Medicaid  and being told that many children are being denied- I simply pray that it children and all children can receive the  care they need.  Giving the inclusive list of everything that is not okay with Libby is worth the coverage- even if it is hard to do. 


Regardless of the political beliefs if their parents... 

Regardless of your opinions...

Regardless of every other factor, Libby, and all special children get  the care they need.  Please put all your finger pointing and name- blaming aside and pray that all children can receive the care they--- regardless of the political beliefs if their parents.  Children, have done nothing to deserve their ailments, so why threaten to punish them because of the radical and racially driven political debating and debasing.   


Who is to draw the line in which child receives coverage?  Is it to be only those whose children can afford it? If that's the case then you are talking about hundreds of thousands if dollars of expendable income. 

Is it to be only the children that YOU choose?  Children whose parents agree with you politically? 

Is it to be children who are a specific color,relgion- of whose parents you approve of? 

Is it to be those Children whose medical conditions will not make the paperwork and their treatments more  inconvenient? 


If you believe that somewhere we, as a country, need to draw a line as to which child gets coverage, then please join me in a certain classroom I know.  I'll let you choose which child you are not willing to agree to their coverage.   Maybe it's my kid that you're not willing to help keep alive. 


The ongoing posts on Facebook make me sick to my stomach.  I wish people would simply work harder at being empathetic and get over themselves. Every child deserves the chance to be happy and healthy.  Regardless.  

And if have offended you- I apologize.  

Sunday, October 27, 2013

Fun


Last Thursday, 10/17 we left home and drive to Ft Worth.  We had a check in appointment with Dr Hottie.  We'll be going very soon for the Botox she needs and meds were increased.  We have to come to terms with the fact that we will give up some cognition to keep her comfortable.  Having a loopy and sometimes fussy kid who isn't in pain is worth it.  Dr. Hottie also reminded us that out job is to focus on her quality of life. Exactly what we're trying to do.  Just don't want quality to mean at home on the couch all the time.

Just a little celebration last weekend 10/19 for grandma Linda's birthday. The kids played dress up while we talked and laughed- what a great evening! 





Xavier working hard to
Make a beard like
Jeff's! 

Fun with the costume makeup!


Baby Thomas brought his family down last weekend- great to be around them!

Jenifer and Caebhin were also here at the house.


Libby's Fall choir concert
was 10/21.   I am so amazed at how well our choir is doing and the kindness of the participants.  Libby has a couple of young ladies who make sure she is wheeled where she needs to be and that she has the materials she needs. 


Libby rocking some therapy!!  10/22

The Halloween Carnival was a success. It is a delight to be a part of this community event. 


The classic Cake Walk did very well at the carnival.


Mariah and Tyson were in attendance. They even took Libby home a little bit early so that way she wouldn't get too tired.  Plus, they got some quality sister time.

There is a beauty to small town involvement and living.  Growing up in a large city and high school I missed a lot of opportunities for volunteering.  The role of parents in a small town is vital in that they keep everything going.  I've seen such a difference in the atmosphere where people are involved in the school, the churches and the community as a whole.

 I think that one of the greatest compliments to a persons life would be to needed in their community during each stage of life.  I am grateful to have been allowed to take part in what is our sweet community of Happy.  

Swallow Test


Three weeks ago we were supposed to be getting some Botox injections for Miss Libby, but the doc cancelled.  So, we headed on to our swallow study, including barium and a sweet radiologist.  
We were able to use Libby's chair and just wheel her right in.  
Getting to watch her insides while she swallowed was super weird and cool! 
I had a fabulous conversation about the ongoing progression of the attack on Libby and her brain with the Speech therapist.  She is not showing immense amounts of the tell take signs of Parkinson's swallow, so with continued feeding adjustments we will
Be fine.  Many blessings!


Friday, October 25, 2013

Be-little and Be-Better

This is not the kind of story I want to share, but sometimes it's good to expose the ugly in order to see the beautiful.

Wednesday night we needed to pick up meds at Wal-Mart and I didn't have a meeting after school, so we met to eat at the sandwich shop, which is attached to the Wal-Mart, grab Libby's meds and supplies for the Happy Halloween carnival.  

We eat at national sandwich shop generally because of convenience and actual veggies for the kid.  (If food can be connected to another stop then I'm usually in since I never know how many ins and outs Libby has in her.)

We ordered as usual and when we went to ask for Libby's veggies on a separate plate, we were told that we would have to pay for the plate.  We asked why since  we've never paid for a small plate or bowl and have done this at these places all over the state.  (It's harder for Libby to chew and swallow the meat, bread and veggies- so we separate them.  Then we cut them up into her bite size pieces.)  

We were told we'd have to pay or we could use a napkin to put her veggies on and cut them on there.  I reminded them of the need to try to be accommodating. I am sure there are accessibility laws in which such establishments should provide some accommodations. We didn't want extra veggies, just didn't want to cut up her veggies on a napkin.  (There was no offer to cut up her veggies to solve the problem.)  We took our food- sans bowl or plate- and used large soda lids to cut up her veggies and feed her from.  Never had this kind of issue before.

A gentleman came up and while leaning over Libby to talk to us handed us a salad bowl and said, "Here, I got this for you because I wanted you to know that you both behaved deplorably.  You should be ashamed of yourselves.  Ashamed of yourselves as parents.  You should be ashamed at your offensive behavior of other people.  Now one should treat other people in the way that you did."  Now, this is a younger man who I am thinking works for this restaurant and is upset because I asked repeatedly why I would need to pay extra to feed my child there.   I'm still feeding Libby and he's still talking.  Our response was along the lines places of "what?"  Giving Libby a bite, "I'm sorry you feel that way, we didn't mean anything bad and weren't trying to be rude- we simply wanted something to cut up the kids veggies on." After our little berating, I asked him to leave us alone and allow us to eat the meal we had paid for.  After he walked off, I burst into tears. I DON'T CRY: well, often, easily or enough. 

Couldn't stop crying. I was so hurt and embarrassed.  Libby is now upset because she doesn't see me cry and is very susceptible to my emotions (poor kid).
Rachael went over to talk to the young man and he reminded her that we are deplorable people who need to be ashamed and that he didn't need to speak to her any longer. She even asked him if knew that he had made us cry and he replied that it's "a lesson learned".  (We are still very calm and quiet and yet I felt like I had to shuffle Rachael away since we didn't have bail money.)  I did say with all of the symbolism I could muster that "it's okay, he's the one sitting at the handicapped table here."  Which he was sitting at a table marked Handicapped.

I do reserve the North-Sider in me for much more important issues; I promise we were not being ugly.  And I do know that I have some crazy to release, my Crazy She was not let loose this time.

We didn't finish eating, couldn't, but made sure Libby was done and went to pick up our meds.   Guess who works in the pharmacy?  Yep... mister "Corrector of all that is deplorable" works in the same pharmacy which dispenses the medicines that keep my kid alive.  
Oh irony, thou are quite vicious. 

We had to pick up the remaining supplies for the upcoming Halloween carnival, which is Saturday.  I did a Sam's run on Tuesday for the requisite nacho cheese and concession stand chips and wouldn't have another chance until Friday night for the supplies. We had to complete the walmart list today. 

I finally quit crying, got Libby's meds, called Grandma Linda and Momma the Hun April from the store to whine about our treatment and to make sure that we had a reason for our intermittent tears. 

Two days later and I still can't believe what happened.

We've had our last sandwich from that place and I'll be switching our meds to another pharmacy which makes me sick to my stomach.   I cried from sheer embarrassment yesterday telling the story and no, it's not a hormonal time for me- I really am that hurt.  Just shows how little we are treated with malice or meanness. 

I internalize everything and I realize that this may have been a huge mirror to myself and to keep me in check.  Not everyone can understand that there are some small needs that can be filled.  A simple gesture goes a long way to help others.   I hate it that Rachael caught the brunt of this young man's words, because  she would never deserve to be spoken to that way.  She is the best human being I know.  And I am really hurt by the fact that Libby witnessed someone saying things like this about us in front of her. No child should have to hear that.  

And when we, myself included, are being self righteous, no one prospers and no one's spirit is elevated. The high and mighty are running over others to make themselves feel better and the lower folks are simply getting more tracks on their backs.  

As for me, I apologized to the workers at the sandwich place and left the bowl with them and a little note.  A simple, heartfelt prayer.     ( I am sure this napkin was already in my purse and not from the sandwich place.) 
 
Maybe I needed to be Be-Littled in order to try to Be-Bettered. Not above, just stronger.   And continue to pray that no one else ever has the need to ask for a plate to feed their child on.