Thursday, November 14, 2013

Faith, Falacy, and A Heart That Hurts

Oh how my heart hurts right now.  Not because of my daughter.  The testing is moving along as it should and things are well.  But on the other side of OKC one of my dear sweet friends is also in the hospital with her child.  Her son Nikko has Dravet Syndrome.  It is one of the intractable epilepsy's.  Nhora, Nikko's mom has welcomed our family into her home several times.  She has helped us in so many ways.  With wisdom that only comes from experience, outreach to help Avagrace get some much needed medical supplies, and love for all of my children as she calls herself "Auntie Nhora."

In fact it was only a week ago today that I saw Nhora and sweet Nikko at our monthly HopeLink support group meeting.  His mom Nhora and father Dana, are also some of the advocates that was present at the Capitol meeting with Senator Connie Johnson.  Yet, today, Nikko is in the PICU fighting for his life.  He is on a ventilator and needing a platelet transfusion.  And the kicker (as if one is needed) is they do not even know why.  How this "kicker" comes to light so often in the case of epilepsy.  There are so many unknowns that even doctors can't explain.  And the only thing that will change that is awareness, research, and the knowledge that comes from these factors colliding.  PLEASE PRAY FOR NIKKO & HIS FAMILY!

For a long time I have struggled with the guilt and grief that comes from seeing my friends and their children and families suffer, while others  with no known differences thrive.  From being a mom in the special needs community I know many unique children.  In fact, I am at the point where I know more children with "unique" syndromes and conditions than typical children!  And it never makes sense when one child thrives and another goes down hill.  Despite doing everything the same.  The perfect example of this is one of my other friends whom has twins with the same genetic makeup.  The same diagnosis.  And yet one of her sweet boys has joined our Creator and the other is still in her arms and is thriving!  What a complex grief that must be.  How is it that despite every variable being controlled and taken into consideration nothing "adds up."  

I honestly think that this is one of the reasons why I hate math.  I understand that "it is the way it is" and "you get the answer from following the formula."  But LIFE is not like that.  Despite this being a scientific-mathematical world there is nothing predictable about it.  I don't care what you tell me about "evolution" or equations.  I have lived and learned and seen more than many people have who are far older than me.  I absolutely am not saying that I have seen it all or am an expert in everything.  However, it would be foolish to think that what I have studied, experienced, witnessed, and lived has not taught me something.  And despite all of that, the hardest thing to fathom, the thing so many people try to refute; is we are not the creators of our destiny no matter what way you spin it.

We are in this world that was CREATED.  There is so much that we do not know and will not know until we are walking in Heaven with our Savior and our Father.  It is faith that reminds me that we are ALL HIS children and that no matter what we do, we will one day be with HIM.  It is not up to us to determine when that is.  We can make all the right decisions and that doesn't mean that we will see tomorrow.  But that doesn't mean that we should just throw our hands into the air and watch life pass us by.  We are here, where God placed us, entrusted to use our brains and our bodies for good.  He did not give us "Chutzpah," intelligence, skills of adaptation, love and a whole host of other wonders to waste.

Yet, like knowledge and wisdom, faith does not magically make everything better.  Faith is like a muscle that gets stronger, but even the strongest Faith cannot move a mountain unless God ordains or approves it.  Faith can move mountains but if it were that easy we would not need God.

So right now, in this moment, I have faith in God for my friends and their children typical and unique.  I ache for my friends that do not have their children physically here to hold and snuggle.  I am broken over the knowledge that miracles can happen but do not happen the same way for everyone.  And I am at times overwhelmed by the guilt that one child suffers and another thrives, that even in my own family some thrive and some have immense difficulties to overcome.

But along with faith, the one thing that I hold on to for dear life.  The one piece of fiber that is so deeply engrained in my composition, is this;  we are not alone.  Because of that fact each situation, each challenge, each obstacle, and each and every celebration is relative to where we are and what our Creators purpose is for us.  Without the experiences that we go through, we cannot empathize, sympathize, or be any kind of support to those around us.  And without each and every experience we cannot be true versions of us.  It would be ridiculous for me to think that my life would be better if x-y-and-z were different.  And so, when my mind wanders there.  When my heart is so heavy I feel it in my toes.  When I feel as if I cannot breathe from the weight of reality.  I remind myself that I am a better person and will be able to help someone else because of my struggles.  If we cannot relate to our fellow human beings, than what in the world is the point or desire in living?

Please DO something to share YOU.  To empower others and to share the burdens that transform us into better versions of our self.  BE BRAVE and extend whatever it is that you have to extend.

Monday, November 11, 2013

Extended Video EEG Monitoring

If you have epilepsy you know what an EEG is.  If you do not, it is a test that reads your brain waves/electrical activity in your brain.  There are metal disc-like nodes that are attached to wires.  These nodes are glued on to your scalp.  A typical EEG lasts a few minutes to an hour after the leads are placed.  An extended video EEG will last at least 24 hours and go as long as they need it to go.  Ours will last about a week.

All Wrapped Up!
Now that we do not have the Vagus Nerve Stimulator and since Avagrace's seizure activity has increased so drastically over the past several months, we needed a new "base line" test to evaluate where her "storms" are starting, traveling to, and ending.  We are on very limited medication right now and will be off of it all together very soon.  This is so that we are able to get an accurate assessment of what Avagrace's seizures are doing and are like.  We will also eventually do some "stress" type things to see what triggers her seizures.

These stays are never fun.  You are literally asking for what you are trying so earnestly to stop.  The release form when you come into the Epilepsy Monitoring Unit warns you that death is a possible side effect of this test.  You also are in a room with Oxygen, Suction, CPR tools, and all sorts of other life saving tubes and devices just sitting at the ready.

Meanwhile, I am making it fun, singing songs, coloring, playing silly games (candy land is her favorite) and making craft, after craft, after craft.  She hopes to have some visitors at some point and I hope for her sake that she does.  She is such a selfless little girl, she never asks for anything.  But together we will get through it.

I am very blessed to have my friend Brittany, who is also a special needs mama, take my youngest on as her own this week.  He is spending the night at her house and she is taking him to and from pre-k.  The our dear friend Pepsi has the other three kids in the morning before they walk to school for Breakfast and Brendan will be home in time to meet them after school.  It is a busy week, but I am so glad that I am here, close to my other babies, and around nurses that I love.  I only wish I could convince some of my Texas Doctors to come to this hospital and for them to bring some of their practices too!

We do not know what tomorrow may bring but for now, we are slowly drifting off into lala land!

Sweet Dreams!  And if you have a purple shirt and can post a pic of yourself wearing purple (even if it is purple pants or socks) please post it on her page Facebook.com/avacake !!!!  I would love to show her some love that way!

Thanks for following us on this journey!  A video will follow soon!!!