Birthdays

We have so many things to be thankful for. This year has brought us bountiful blessings and challenges galore. I have never really doubted if I could handle Libby's illness, until this year.  I have clung to the idea of making every minute count and to get through every minute with kindness and patience. This year, we have so much to be thankful for and after discussing with Libby we are going to begin to give back.  Birthdays are not a given, they are a gift within itself. 

We have been gifted with an amazing original Cassie Foster painting which we have special plans for. We are going to auction off this beautiful piece and give the proceeds to Make a Wish for Libby's birthday. 

Here is the wolf.  I love this wolf.   Libby hasn't seen this yet since we are going to try to create copy for her to keep.  And the original painting will go to whomever bids the highest. 

 

Not interested in the painting and still want to give?  We have a list of items that are needed desperately at Cook Children's, such as pajamas, card games, and toiletries. 

Not interested in either the painting or the  items?  We'd still love for you to join us to celebrate.  

Our plan is to have the painting available at a meal we are going to host to celebrate Liberty's upcoming 17th birthday. We will be sending out invites soon and will share the time and place as soon as we know for sure. 

No gifts needed, we will make sure that Libby has a few things to open. She already has so much and is so blessed in so many ways that it's time for all of us to give back. 

Co-working

Working with me, around me, near me must be a trip. My abilities and personality aside, life with Libby as my kid, in my class and on my campus, is definitely a ride. 

Rather than Libby spend her lunch in the nurses office, she's been eating with me. You can imagine how excited she is to be in my room instead of with her friends. 

The placement of the feed bag is important- a carbiner clip works everywhere. 

What? Ya need to potty in the middle of the meal?  Gotcha covered.  

You have to laugh and adapt and sometimes your co-worker will guard the door so you can deal with a 16 year old in the middle of a tantrum.  

Working with me isn't easy. I'm creative to the point of being highly annoying. I make leaps in conversations that are hard to follow.  I am driven to learning and striving to be a better teacher in a purely nauseating incessant way.  My classroom lives in truly organized chaos.  

None of these things have changed, they are only exacerbated because I parent Libby at school. 

Thank you to all of the amazing people I work with. I appreciate you all more than you'll ever know. 

Side effects birth Mary Tubaca

Libby had her Botox on November 8. By November 16 she was having immense swallowing issues. We knew this was a

possible side effect, so we had moved to smoothies and swallowing bites with pudding. November 18, I called the docs and the speech therapists. Libby had a small swallow study on Tuesday that didn't go well. Even though we knew that Libby can only have pudding consistency, the therapist freaked out when Libby aspirated with applesauce. Ugh.

We did the dutiful thing and called the docs in Wednesday and got her in for her swallow study on Wednesday. We met a new Pediatrician on Thursday evening and Friday afternoon she had an NG tube implace. Libby spent the weekend pouting and refusing to smile and go to the restroom. She was listless and really not pleasant Sunday. She was excited to go to school and yet didn't want everyone to see her with her tube. 

Monday morning, November 25, she began throwing up before 10:00. By 11: something- she had honked out her tube. 

We were at the doc that afternoon- and checking into the hospital that evening for observation, a swallow study, tests and general poking around on my kid.  

(We've never stayed at this hospital even though it's only 45 miles away from our house.) 

No bad blood results.

Failed swallow study.

Nose tube instead of stomach tube. 

Doctors here and in Ft. Worth wanted to avoid possible scar tissue and infection for something that we believe will be temporary.  We wanted the tummy tube because we were already having some swallow issues and are planning in following through with some Botox several times a year.  The path that allowed for the least long term side effects won. 

We were home for Thanksgiving. Due to illnesses our meal Thursday was Mariah, Grandma Linda and us. We had Grandma Linda's meal, as is traditional, on Friday. 

All in all a time to be grateful and to re-evaluate what is the most important. 

Introducing Mary Tubaca, Libby's lifeline and arch nemesis. 

Doesn't matter where we are that tube can still be hooked up!  

The idea that I would be pulverizing my kids food and giving her bites of pudding and taters many times a day would have never occurred to me. It's funny how the amount of planning we do doesn't really matter because stuff happens and we adapt.  I am

Grateful for the ability to adapt. 

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.  

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!

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. 

Ego and pet peeves

   When Libby first became ill, I became even more obsessed/focused on teaching.  I have used teaching as a shelter from the ugly reality I've learned to face since our world changed forever.  I knew that there was so little with her health that I could fix or control, but researching, planning, executing and reflecting on a lesson  I can do.  I have come to terms with the fact that I will have to leave the beloved classroom sooner than I want.  I even have tried to control this fact, by applying for leadership jobs. I do not know when my career will have to end or what part of the education field I will be in when it happens and that is okay.  I have been working on letting my ego go.  There is no room in the classroom for the teacher's ego.  None.  It is not about me, but it is in one way.

    One of my biggest and most hurtful pet peeves is to be underestimated or discriminated against because of who my child is.  When co-workers and administrators have said, 'I just thought you had enough on your plate" as I am overlooked for something, it is hurtful.  If the person does not know about Libby, this statement means that I am not capable of fulfilling the task.  If the person does know about Libby, then this statement means that I can't handle her so why would I be entrusted with anything more. 

     As a fearless friend told me, "I am carrying the plate, I'll let you know when it is too heavy."  Having a child who has many special needs means that I am more vigilant and less careless about my calling as a teacher.  I plan for much longer stretches into the future, because I am not sure what could be coming down the road.  The plate is mine to carry and I am doing much more than I ever knew I could. 

      Please don't ever assume that a parent of a special needs child cannot do something, this feels like discrimination and is judgmental.   If you need me at any extra meeting, let me know and I'll make arrangements, just like every other parent.  If you don't want Libby or both of us there for an impromptu meeting, then let us know in advance. (I carry ear buds and accessories for anytime she has to be in a meeting where confidential information is discussed.)  Do not turn us away at the door.  No one needs to experience this feeling.  Try explaining to Libby why she wasn't allowed in.

    I know that I am doing what I am supposed to be doing by teaching and am learning everyday how to do this well. 
   
     I know that I am supposed to be Libby's mom and am learning everyday how to do this well.   Please do not take opportunities away from me because you are feeling so much pity and sadness for me and my beautiful child. 

    When the plate is too heavy, I will let you know.  I would never begin to say what I think is best for you and ask only that you give me the equal opportunities everyone deserves. 

    I have stewed over this for quite awhile and fought with my type-a attributes to really ramp up my already obsessive tendencies towards my teaching practices.   I have not gone into the battle ready thinking of "well, I'll show you!" or the depressive thinking of "if they don't think I can, then I certainly can't".   I am focusing on the lessons that every person I meet is learning.  I know that we are all on a journey that we have not necessarily chosen.  Some of their journeys are harder than mine.  We will continue to be a blessing, whether our plate is too heavy or not.   

"Be kind, for everyone you meet is fighting a hard battle."  Philo

Homecoming fun

Last week was homecoming for Caprock and we had a great time dressing up and sporting the awesome mum that Libby was given.

On superhero day, Libby and one of my students were Bat Girl.  For us, it's the dressing up and enjoying the themed days that transitions us into fall. We went to Happy's football game on Friday night, instead of the homecoming game for Caprock.  (We had already commited  to help out at the front gate with the Happy boosters.). 

Tonight, 9/28 is Rachael's 20th high school reunion.  It's amazing how time goes by, we were in this same hall for her 10 year reunion.  After what were some pseudo shocked introductions so many years ago, now I feel much more at home.  

Here are most of the Graduates of Happy high school, class of 1993. It is just an amazing gift to be able to appreciate where you have come from and recognize the great people your classmates have become.  

I know the sweet spot I have in my heart for all of my classmates. When I am in my classroom and I witness how the students are with the kids who they've been in class with since "way back" it always makes me smile. Once you know each other for so long, even if you're not close, there is a since of belonging or even ownership.  No one else can talk smack about your classmates- but you.  It's just a neat experience to be the outsider and watch the dynamics and camaraderie  unfold.  

The decorations with beautiful mums we found at Lowe's.

Some of the kids that were hanging  out with us making some cutesy crafts. 

Three hours in and going strong!   Many thanks to Lynn and Jimmy  Stockett who did so much to make this reunion a possibility.

Little decoration becomes a stole for the princess.

School is going amazingly.  I just can't explain what it is like to know you are doing what you're supposed to do. When I am teaching all is right in the universe.  I made up mind to drive myself to be all in- both feet or bust.  Just in case I end up out of the classroom in the next year, this one will be the best yet!    

Twist a Wish

Sparkles Ready to rodeo!

Rachael handling the transport of the rodeo girl!

Libby had to have a special dress to match her boots! 

Lots of cowboy butts for Libby to giggle at and then get really embarrassed. She used her sign to hide her face. 

Watching them boys get their numbers pined on them.

That sly smile that says that she knows how cute their butts are!

Petting a pony.

Holding our seats.

There's miss Libby waiting very patiently!
Libby at Twist a Wish Part 1

Libby at Twist a Wish Part 2

Final flings

Having the chance to get away with our little family is a true gift.  These pics are from our last hoorah  of the summer.  We went to Santa Rosa, New Mexico and then to Los Vegas, New Mexico. Beautiful.  It rained a great deal and that made the time even better. Thank you for our time.  We are grateful. 

Enjoying our last little but if time before returning to school. Mariah and Rachael at Storrie lake. 

Possible new apparatus for Libby.

It will also help her walk.

Taking pictures at the railroad tracks in Las Vegas, New Mexico.   Great fun!

Playing in the pool at the hotel.

Libby and Sparkles posing during our meeting with Lynn, one of our many supporters. 

Way too soon Jasmin will be taller than Libby! 

The aunts with Jasmin and Xavier.

Beautiful little area to boat, canoe and for us to sit.

Jasmin helping me get us loaded up to head home. 

Rachael and Xavier hanging out.

Me and THE niece, Jasmin. 

The princess chilling. 

Anger and fear

The lab results for the awful, terrible disease that Dr. Hottie tested Libby for was negative.  This disease is rare, untreatable and fatal.  Libby matches all markers, except for the skin and rectal biopsy results.    We didn't know which way to pray- make this test be positive so we have a reason behind her steady decline? Or, a negative so that we continue to not know why is underneath the Lyme and is causing her slow and steady decline.  

Neuronal intranuclear inclusion disease is not the one. As of now, the doctors have no other ideas or tests to run.  So, we will continue to plan for the DBS.  

The ceiling of Grandma Linda's patio is collapsing due to a leaky roof.  We were preparing that room for the upcoming fix it construction when  we got the call dreaded by every parent. Mariah had been in a bad car wreck.   (We took on a third car payment two weeks ago so that she would have a safe and reliable vehicle.) 

She is okay, her passenger is okay, the other driver is okay.  The car is not okay. I am rotating between ugly anger, absolute fear and immense gratitude.  We had a 40 minute drive to the crash site, during which I released a torrent of colorful words and desperate prayers, while knowing only that she was coherent.  The ambulance pulled away as I pulled up.  

I grieve daily over Libby, in a constant cycle.  Continuously grieving one child is awful, facing the loss of Mariah is simply too much.   Fear and anger are terrible bed fellows. Terrible.  Grateful she's okay, not happy at the risks taken- even accidentally.   

Mariah is okay. She's sore, has a pretty good knot on her head, CAT scan was normal, but she'll be sore for awhile.  She'll be home with us for a few days; if I don't smother her with love or slap her a few times.  

Parenting is amazing and it's not for wimps. Fear and anger may go well together, if they're spiced with gratitude.  She's alive and Libby has another day and hey, never claimed to be any good at this parenting business. And, I am much more grateful than anything else. Be a blessing....

Love and hope

Ileana

Libby proofing the house

So, we had made the decision to make some changes to the house to make life safer and easier for Libby.  This included having the bathroom redone. 

Say goodbye to the bathtub where I loved to soak and bathe the animals.  Also, the surround that was there was added by Rachael's dad, Terry and us girls. 

Enter the walk/roll in shower.  After another terrible shower with Libby several weeks ago, I left a year filled message to our caseworker for MDCP(Medically Dependent Children's Program).  Showers with Libby are the worst part of our day. For over a year, everyday has ended with tears and screaming- and Libby doesn't handle it so well either!  Now she has a more accessible shower area.    

Above Access guys Delano and Chad were here for four days and replaced the shower, the bathroom floor, and widened the bathroom door. http://www.aboveaccess.biz/1.html.  

They managed to get us on the schedule

and get the work done thoroughly and quickly. 

Before they arrived this week, we ripped the 

carpet out of both bedrooms.  This will

enable us to get Libby in and around easier.  It

also allows for better cleaning.  Libby hates 

it, but we've promised her a super cute rug. 

Yes, these are the original floors. They're cleaned, 

stained and polyurethaned. We were all a little high

for a few days, but I'm very happy to have the

 work done. I've also mostly finished her room. 

Parts from the prayer kneelers we recycled, 

sanded, painted, and added hooks. 

I painted her desk, made by Rachael's grandpa, 

the chest, found,sanded  and stained whole I was 

pregnant with Mariah and the toy cabinet we bought for 

girls.  We added new hardware and there ya go.

Now, we'll just be getting her used to the changes

Like any of our changes are small. 

"Archimedes" given to Libby by Cassie Foster, 

artist extraordinaire!   More exciting things 

coming from Cassie in the future! 

We took Aunt Judy out for a meal and to enjoy the 

First Friday Art Walk.  We had a fabulous time. 

It was nice to get to hang out and relax. 

Happy birthday Aunt JuJu!!

Blessings and hope

Ileana