Saturday, January 18, 2014

Heavy….and Oklahomans call your senators to pass compassionate care act in February!!!!

I grew up in a wonderful family.  My mom, sister, brother, grandparents, and Aunt/Uncles are still very much a part of my everyday life despite being half a country away from them.  I have learned so much from them and continue to marvel at how alike we can be and yet how different we all are.  Where the majority of my family enjoy talking none of them really like to share anything below the surface.  They are very independent, hard-working, and private in nature.  And then there is me.  I have always shared my life for all to hear.  I am pretty much an open book and when I talk I generally get tongue tied or insert my foot directly into my mouth.  One of my best friends growing up made me a collage once and even on that collage there was a quote about putting my foot in my mouth.  Sometimes I say something that is coming from a place of well-meaning and love and yet it causes a wound in the one who hears it.  I hate when I cause the pain from words, and I hate the feeling of pain from words.  I am an empathetic, emotions-led, intuitive, sensitive, person who has always loved to help others.  On that same note I feel my way through life.  I over think everything.  I analyze each and every emotion, expression, and movement and studying human development, families, society, and people in general is my absolute passion.  But with these characteristics I tend to feel like a volcano ready to explode if I am experiencing anything that I cannot share.  Don't get me wrong.  If someone else has trusted me with something I am as tight lipped as they come and honesty and loyalty are two of the most important character qualities to me.  But if I have something going on in my life, or an experience that has given me a greater understanding of myself, or of the human experience; I simply must share in writing.  Journaling, scrapbooking, smash booking, etc…have always been a staple to my existence.  When I started this blog it was my therapy.

However, as a mother I have had to walk a very fine line.  I understand and respect that my children are not me.  They may not want me to share information about their lives, their lessons, their experiences, on my blog.  With Avagrace's special needs I have always prayed over each and everything that I share.  Sometimes I may be writing a blog for a few days before I actually post it.  I never want to share something that may one day embarrass her.  Fortunately, from the start of this I have always felt a tremendous peace and calling to share what we go through.  Because if I do not share her condition and the realities of epilepsy and the different types of epilepsy than what is the point of all of this?  If this cannot help others than why even experience it?  Isn't that what life is about?  Connecting to other human beings and helping each other?  Making this world a little bit better than it was before you came…leaving each day a little bit better than you did the last?

Somedays I fail miserably at that.  Somedays the emotions and the truths of my reality get so heavy that I feel as if I am suffocating in a collapsed building.  But even in that building I always find a ray of light, an air hole, or an arm reaching in to help me out.  I have been blessed throughout the years by seeing the hands of Jesus in some of my lowest moments by some of His children.

A week ago yesterday we had to start the paperwork for Avacake to be on Hospice care.  I shared with my family, only a handful of friends, and that was it.  I very adamantly did not think that I would share publicly.  In fact I made sure that I told only a very few people and when I did- I said that I would not be sharing this publicly.  We started the week off in Texas seeing her specialists and I was very positive about everything.  I was grateful that we were going into this experience with every intention of coming out on the other side of Hospice as survivors and supporters of a miracle.  But as the next few days went by Avagrace got worse, and the forms got more intense and direct.  The decisions were more intense and it got to a point where I literally didn't know which direction to go for treatment.  By Thursday I was in such a state of depression that I did not want to do anything other than cuddle my girl who had been seizing so badly in the days prior that she needed more and more rescue meds every single night (right now bedtime is her worst time for seizures).  I was trying to rest because I had been up almost every night for multiple hours just trying to give oxygen and medicines, but every time I closed my eyes I would have nightmares or panic attacks.  The opinions of others were filtering in, causing doubt, and tearing me up, as thoughts and plans of what Brendan and I would need to do and want to do if Gracie does go to Heaven weighed on my heart.

Thursday night was a bit better because Gracie had less seizures and so we both got some sleep and I had a plan for Friday.  I always function better when there is a plan.  I was going to visit with a friend which would have provided the much needed friendship and keep me busy on the normal day-to-day stuff that gets neglected so easily.  By Friday morning I was feeling a bit better but when doctors appointments, errands, and unexpected to-do's caused me to reschedule with my friend the feelings of defeat, the misguided words of others, and the judgements from those who do not understand started to take over again.

Remember how I said that in that collapsed building sometimes an arm will come down to pull you out?  Well that arm came down in the form of a gentle but loving rebuke(not really the right word but close) from a friend who has walked this road and loves me enough to help me get my feelings in check when I am allowing them to destroy me.  On my Facebook wall she posted this status update because it reminded her of me.  And it couldn't have been more fitting!

  "I can't control the things that happen to me each day, but I can control how I think about them.

I can say to myself, "I have a choice to have destructive thoughts or constructive thoughts right now. I can wallow in what's wrong and make things worse, or I can ask God for a better perspective to help me see good even when I don't feel good." ~ From my book, "Unglued"

You see, we have purposefully not shared videos or pictures of Gracie as she has been obviously or forcefully seizing for several reasons.  

1.  We feel very protective of her and we do not want her to see those videos and be scared. 

 2.  When it is happening we do not think to record and if we are recording we abandon the camera to care for her.  

3.  Even if Gracie cannot "hear me" during a seizure I always talk to her/sing to her/ tell her to come back to me.  Maybe it is just for me, maybe it does help, but it is just how I handle it.  

4.  If our miracle happens and Gracie is healed I do not want her to be embarrassed or regretful of something that I shared when she was little.  Let's face it.  Seizures are not pretty.  They are scary and by putting something on the internet we have no control over who will see it.  I would hate for one of our kids friends to click on the video, see the worst seizures and not have someone to talk to about them, that could explain what is happening and teach them in the right way. 

5.  We are still told in public when Gracie has seizures that she is "possessed" in need of "laying of the hands, rebuking of the devil, oils, or whatever belief a person has to "cast out demons."  We do not need Gracie's videos to be used against our knowledge or permission in some weird way.  And we certainly do not want comments like this to be attached to her forever, at least when an uninformed looney says something in public I can correct them and be done with it.  However, with us protecting her and not sharing her most graphic seizures or even some of her minor ones (we have shared some but they are usually ones that are super quick or unnoticeable by the untrained eye), we are also sharing only the good and happy pictures so people do not understand why a child who is able to ride her tricycle one morning, but then three hours later be unable to walk or talk….

So as a mother I have to be ready and understanding of those who see Avagrace in her good but not her bad.  I have to understand that they do not "see" what I am saying.  And that even though countless other people have, and even though her doctors have all the documentation to diagnose her (diagnosis do not just get thrown around) this is a crazy world and people are not all going to understand or "get it" when we share what we share.  I have to choose to let those comments roll off my back and not hurt my heart.  And I have to continue to protect my daughter but also honor God in what he has entrusted me with….  

So if you have made it this far you obviously want to know what is happening with our girl.  For that I thank you.  I know that when I finally share on here my blog posts are more like novellas.  For that I apologize.  And I am going to say the next bit in as blunt and straight forward manner as possible so that it is done, out there, I will not explode/implode/or any other forms of 'ploding' lol….

Avagrace's brain is slowing down.  Her heart has stopped several times in the past year.  Because the brain controls everything when it slows down the rest of your body slows down too.  Your organs are no longer functioning at their optimal level.  When she seizes her body is not able to sustain its energies or abilities especially when her seizures cluster (happen frequently) or go status (do not stop on their own).  So when her body is seizing her already slowed brain is not able to handle the functions of breathing and maintaining her heart rhythm the way it has before.  During any prolonged seizure brain damage, decreased oxygen, and other symptoms occur but now it is magnified.  Her brain has several lesions (which are scar tissues) and "hot spots" or "firing holes" where she literally has a hole from repeated electrical activity starting/stopping in one specific spot.  The problem with this is that she has many of these all throughout her brain.  Her seizures have never been regulated to one or two portions of the brain but have affected all lobes and levels (meaning the top layer of her brain and deep within it too).  So right now she is a ticking time bomb in a sense.  She is on hospice because her heart and organs could shut down at any given moment or during any seizure.  

However, she is a fighter and her adaptive skills have always been what has pulled her along.  We are still believing that this is just another chance to show how awesome our God is and how amazing the power of the human spirit is.  

We (meaning her doctors in Texas and Oklahoma and her father and I) are also confident in something else.  We are confident that if she is able to receive cannabis oil aka medical marijuana aka charlottes web, that her brain will be able to heal from the lesions and she will have a chance to regain brain function and possibly have seizure control.  So right now we have two options.  Get a pacemaker, medi-port, g-tube (again), and surgery for some of her lesions all the while on hospice just waiting for her time to go Home to the Lord.  OR get her on cannabis oil and watch her brain heal as the neuro-protectants go to work. Check out the US Governments patent on this (#6630507) even though they feed us the rhetoric that it is all addictive and deadly etc...  

The problems with this are that the first choice is legal, not in conflict with my husbands federal position in the Air Force and does not require us to split up our family to afford homes in two states or to leave our doctors and start over with new ones……or risk my husbands career, split up our children between the two of us, have Avagrace, myself, and our two youngest kiddos move to Colorado Springs, and find some way to afford all of this.  

The ONE MAJOR THING that I am praying for and holding out for is this.   I will move to CS and live in a homeless shelter with my kiddos if I have to in order to save my girl…but…Oklahoma is voting in the very beginning of february on something called the compassionate care act.  This act will immediately allow parents such as myself to bring the prescriptions (yes you get a prescription from a doctor and go to a special 'pharmacy' that regulates on the chemistry level what you are giving to your children) home to Oklahoma so that you do not have to uproot your children from their doctors, families, homes, in order to give them a chance at life.  

SO PLEASE…if you are local call your senators and tell them to pass the oklahoma compassionate care act in February!!!  


Wednesday, January 15, 2014

The Amount Of A Persons Max Force Plus Their Body Weight Equals The Physical Power Of A Seizing Body.

A few days ago I was lifting a very groggy post-many-seizures Gracie from her wheel chair into our van.  I had her in a cradle hold and as soon as I had her above waist level with myself in a full stand she began to seize again.  Her back arched, her head flew back, her arms locked up, her legs stiffened and shook and I held on to her for dear life.  You see you cannot force a seizing person into a certain position.  I couldn't make her sit in the car and even though I can lift her 78lbs in a normal circumstance, or when she is sleeping and just limp.  But during a seizure, when your brain is misfiring and the electronic impulses are forcing your body to tense and jerk and tense again.  All the force and power of your body is at it's full potential.  You are not conscious and so your body is stronger than you ever new possible.  So I prayed and prayed hard that I would not drop my precious girl and you know, I felt His arms helping me to hold her up.  It might sound silly to some but it is true.  This is not the first "car" seizure she has had, nor is it the first time she has seized when transporting her from her chair to the car.  At one point the base security guard had stopped to help hold her and that was years ago.

The thing that stinks and the thing that is awesome is that Avagrace can have such incredibly good days.  She can run, skip, ride her adaptive tricycle, scooter, etc.  But sometimes, just hours/minutes/the next day, she is completely different and cannot walk without assistance, cannot complete her sentences, and cannot do many things the same way.

So, in holding her during the seizure I tore my trapezius muscle and am now healing.  Up until this point I thought that it would be awful for me to have a handicap tag or a wheelchair accessible van.  The docs told us that because her condition is degenerative and progressive that we would eventually need one.  But honestly, it is overwhelming to think that I could continue on without it.  I know that God has us in his ams and that everything will happen in His time.  However, sometimes, like today….it is easy to feel overwhelmed by circumstances, laws about medicine, insurance red tape, and the financial stresses of being the blessed parents of a special needs child and the like.

However, I will never stop loving EVERY SINGLE MOMENT, no matter how difficult it is, that I have to love and hold my little girl!