An update

So....in my last post I didn't really update about Zeta....

Trust me.....I got some feedback about that:)

We're grappling with another big question with Miss Zeta.

Since the hospitalization in December we've noticed something.....different.  I haven't been quite able to put my finger on it, but something has been.....different. As you know, she was hospitalized again at the beginning of this month.  I've really just been thinking that perhaps because she was so sick in December and then in the hospital again a couple of weeks ago she was just having a really hard time getting over everything.....but in the back of my mind something keeps telling me that something isn't right. 

After some discussion with her home nurse I finally called her neurologist.  We think that maybe Zeta has developed a new seizure pattern.....initially I was thinking maybe just some absence seizures....now it sounds like they may be complex partial seizures which sounds a little more scary to me....I still hope that they are not seizures at all...but she has really been a totally different child.....

She has these blank staring moments while grinding her teeth.  Her heart rate sometimes does funny things again.  She's been having some difficulty with her feeds....and she is sleeping anywhere from 18-20 hours a day.....Now, if either of my other two were acting like this we would have been at the hospital door weeks ago......

but remember this is Zeta....and Zeta doesn't play by the book....

I guess I've put off talking to neurology for this long because this seems minuscule compared to the seizures she experienced prior to the brain surgery..... I mean she's breathing and she's not blue.......but she is not the glowing little girl we saw after brain surgery.....perhaps I've put it off because I don't want to go on another journey of finding out what is wrong or worry about trying to make people see what is happening....mostly I believe I've put it off because I'm not willing to accept if it really is new seizures that we're dealing with........

The neurologist gave us the option to go in for a 6 hour EEG (a test in which they put electrodes on her head and read the brain waves) since it's been a while since her last one.  This way we could try to catch an event happening to see whether or not it is seizure related and where it may be stemming from......He also gave us the option to work on some of her seizure meds first to see if that makes a difference.  It scares me any time we discuss changing up her meds simply because sometimes the meds can be just as bad as the seizures themselves.  However, we've opted to try the med route first.  With the EEG we aren't guaranteed she will have an event during the recording and if she doesn't we would still go ahead with the med changes to see if it makes a difference so I guess we're just trying to buy extra time.   We started the changes yesterday and will continue for 5 days before making a decision as to what to do next.  It goes without saying - I've been watching her like a hawk.  The drawback to all of this is that anytime we do anything with her medication it typically makes her very sleepy.  With her already sleeping so much anyway I'm not so sure I will be able to tell a difference either way.

So that's Zeta's story for now.  She's ok......but she's definitely seen much better days!  Please pray for her and pray that she has peace. Pray that we see that playful personality and heart-grabbing smile more and more each day!  Continue to pray for our boys and our family.

Boys are playing, Zeta is sleeping....and apparently I'm feeling philosophical

Sometimes I wonder….Did I put myself in this position…..or is it really part of God’s plan?

And

I wonder……..why did I start blogging about our experiences………was it my desire to be able to shout my concerns to the world?

Or

Was it Something greater than myself?

When I was little I believed in God (in part) because it was less scary than the alternative……I mean I could not always wrap my head around the thought of this Being who just appeared and began creating things……..but I sure as heck didn’t want to go to hell –……..

Thing is….I’ve come a long way in my life’s journey since then…..

Do I have it all figured out?  Not hardly! 

Am I sure now that God exists? Absolutely! 

Do I still have questions?  All the time..... 

Am I ever disappointed?  Yep.

I guess one of the first times I came to really understand that God works in ways unknown to us was when my daddy was in a terrible automobile accident.  I was 8.  From things I overheard he probably shouldn’t have lived, and they sure didn’t expect him to walk again……….especially 3 months post-accident –without any type of therapy.  There was no explanation for it so I knew it had to be God.  That’s what a lot of people around me said anyway.

What I couldn’t understand was why when I would beg God to please let my three-wheeler crank (and I believed with all my heart that He could do it) why he wouldn’t start the thing.  I would beg and bargain, but it didn’t always work….and of course if it did ever start after my begging I would soon forget about all the things I promised to do.  I find this behavior to still be true in my life today.  God can show me all of the BIG things He can do and I am amazed – for a while…..but once things get back to going ok and there is no imminent danger or cause for adrenaline rushes then I start to fall back on all the commitments I’d made in my heart.  I become lax in talking, trusting, knowing.  I become that bratty little kid again.  I just enjoy the ride and don’t really pay a whole lot of attention to all of the Little (and Big) things He continues to do.

I’ve been asked by well meaning, ignorant (and that is not always meant in a negative connotation) and/or just plain rude people – Do you know what caused Zeta to be like this?  Do you think you did something wrong– what do you think you did? Well, the part about what caused this I can handle……but the part about what did YOU do to cause this…..I mean come on….don’t you know there was a point when I worried about that every day.  Don’t you think I tried to re-live every day I was pregnant trying to figure out where ‘it all went wrong’??? Don’t you think that I believed I was being punished?  I don’t need other people to remind me of that. 

Just as I don’t need other people reminding me of what a rotten mom I am to my other two boys.  Oh, no – no one has ever told me that (directly).  I do enough of that on my own……I cannot make another person comprehend what it is like struggling to watch one child survive while it seems the  other two  might slip away in other ways…..

Thing is….I realize now that nothing went wrong.  That everything is exactly how it was written.  I had (and still have) no control over any of it……and you know what?.....I’m ok with that.  I know that we’ll be taken care of.  I know that we cannot predict, prevent, or prolong life or death – for any of us.  I’m at a place where I’m strong enough to know that nothing can bring us down any lower than where we have already been.  I’m confident and sure enough to say that His plans are greater than mine. 

On days when I’m not feeling quite so assured I know that He understands and will see me through it.  I know I am not invincible.  I know that grief will one day pour upon me again. 

That’s the part I still struggle to understand….but , you see, I AM beginning to understand that it is NOT meant for me to understand…..Does that make any sense?  I can’t explain it.

I can’t explain why Zeta was chosen to be a *brave little soul*….. I can’t explain why Stevie, Steven, Chancelor and I were chosen to be the family given firsthand witness of all that is possible in God’s Hands…….

I don’t know why there often has to be physical or mental suffering in order to be able to open our souls. I can’t explain why there are ‘good’ people struggling with mental and emotional  sickness.  I can’t explain all the ‘bad’ that we all have to deal with every day. 

No, I don’t understand it.

Sometimes, I wish I could step into the hearts of those that are hardened.  I wish I could just pour our experiences into their minds.  Not that I want anyone to feel the angst and grief – but I want everyone to be able to experience the warmth and love.  The secure blanket of love when you realize you’re not alone….when you realize that there is Something much greater than yourself. When you realize that you don’t know everything, that you’ll never be able to fix everything – AND….AND…. you’re ok with it……Because….Because you know that regardless of how hard this moment might seem you know that there’s something greater.  It’s when you open your eyes and look at all that you’ve overcome.  It’s when you finally do realize that the very first breath you ever took was a miracle…..We, as humans, have a tendency to forget these things………

Sometimes I forget these things, but I’m blessed enough to have people to remind me. 

This is where I wonder if it’s really me who chooses to ‘live life out loud’.  Or if Someone else knows that I just need to…..in order to praise Him….or even just to make it through some days.....

Just this week I’ve been reminded that it’s not all about me.  I received a couple of cards (both on the same day).  I was in a particularly bad mood that day………but when I opened the first card I read:

Without even knowing it, your faith is a shining light touching those close to you and even those who do not know your name.  Without even realizing it, your faith is the topic of conversations.  Your perseverance and strength could only come from God who lifts and sustains you in times of illness and shows up in amazing ways when you are discouraged.  Yes, your light is brightly shining and warming the hearts of all who are near.

Ok…..talk about a message from God………..To me, the message was loud and clear – “Get out of your funk little girl, and get back to practicing what you preach!!!!!!”  I had to laugh at myself.

Then….

When I opened the second card ( a singing card to the tune of Lean on Me, mind you) the tears kept falling while I couldn’t quit laughing at how absolute this message was……..

……I have always walked by faith.  Sometimes there was only a little light, a little hope that kept me moving…….live by faith!....no matter how dark it may be, follow the lamp at your feet that God provides to us all…..  A small step is still a step forward.

Whew, ok Lord, I get the message.

Some other things that have solidified my feeling of living my life out loud?  Hearing from friends, acquaintances, or people that I barely know and having them tell me about a challenging situation in their lives….and then telling me that by witnessing what God has brought our family through has given them the faith and ability to know that they too will make it through.  How awesome is that?

…and know what?  It’s just a part of what I set out to do when I started this blog…….(or was it really my idea at all??)

 For I know the plans for you, says the Lord……Plans for a hope and a future!!

 

*The Brave Little Soul*

 Not too long ago in Heaven there was a little soul who took wonder in observing the world. She especially enjoyed the love she saw there and often expressed this joy with God. One day however the little soul was sad, for on this day she saw suffering in the world. She approached God and sadly asked, “Why do bad things happen; why is there suffering in the world?” God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.” The little soul was confused. “What do you mean,” she asked.” God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.” The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love – to create this miracle - for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain herself. With her wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you. God and the brave little soul shared a smile, and then embraced.

In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.” Thus at that moment the brave little soul was born into the world, and through her suffering and God’s strength, she unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys – some regained lost faith – many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.  -  J. Alessi

Just what the doctor ordered....

Well, here we are again.....

We brought Zeta in for a tune-up yesterday. She has been having a hard time getting over her last UTI.  Looks like another round of  IV antibiotics and fluids are just what she needed.

I'm not going to say this too loud,

but.. 

I.hope.we.go.home.soon!

As your faith is strengthened you will find that there is no longer the need to have a sense of control, that things will flow as they will, and that you will flow with them, to your great delight and benefit.
-- Emmanuel Teney

Glad I remembered to bring my faith with me this time!