Faith

While we can't always choose our thoughts, we do have freedom to choose on which thoughts we dwell.    ~Norman Wright

I wonder how long I will have an issue with the month of July.........

Zeta's first "big" seizure episodes began in July of 2010.  She was status epilepticus and went into septic shock from a kidney infection.

In July 2011 Zeta had brain surgery.

This year, in July, she ended up in the hospital for feeding intolerance, seizures, bleeding in her trach and maybe her belly, and lots of pain.

We've had countless admissions between these events - but the July admissions just seem to carry a heavy burden for me.....maybe it's the fact that July is the 'deadliest' time to be in a hospital.....maybe it's the fact that July 2010 was the first time we ever saw Zeta that sick.....maybe it's because it was the first time I felt we may lose her and the looks on the faces of the doctors and nurses around us led me to think they felt the same way......those are some of the toughest memories.....

Whatever it is I'm just a little leery of July and I'm kind of glad it's almost over! (I know I shouldn't wish my life away!)

Last Monday Zeta's neuro team in Phoenix met.  They concluded that there is a suspicious area in a ventricle near where the tumor was removed from her brain.  There is nothing they can do surgically for this.  Gamma Knife radiation was suggested as a possibility -although they aren't sure it would alleviate Zeta's symptoms.  The GK team met on Friday and we will have their recommendations early this week.

Regardless, we try to remain positive and keep our minds on the present.  Nothing is gained by  worry over what has passed or what may or may not come.

Our prayers are that we  make the right choices...that we can gain control of Zeta's symptoms and keep her free from pain....We pray we are are able to meet the needs of Steven and Chancelor and give them the attention they desire and deserve.

Although, I have many, many selfish prayers.....and sometimes I want nothing less than for Zeta to be completely healed......for her to be a typical two year old running down the hall and bumping her head.....crying for Mommy and Daddy.....laughing at her brothers or knocking down their toys....for our family to go outside and do things together.....to go places together....all together...as a complete family.......I do pray selfishly for those things that I want....... want so badly that I feel as though my heart could break....but....but I continually try to remind myself that there is something greater at stake....that our lives has been immeasurably impacted.....that so many truths have been revealed and many lives touched....I look into the faces of the three greatest loves of my life and know that I should not dare ask for more....I try to remember to pray for His will and not my own.  As difficult as it may sometimes be -I know that the Greater Plan is much better than my own........

In the same way. the Spirit helps us in our weakness.  We do not know what we ought to pray for, but the Spirit  himself intercedes for us with groans that words cannot express.  And he who searches our hearts knows the mind of the Spirit, because the Spririt interceds for the saints in accordance with God's will.  Romans 8:26-27

It happened

Honestly, I would much rather keep all of this information to myself.....but I suspect if I am going to fully heal I will need to purge my feelings....and if I plan on helping another soul I'm obligated to share, right?

 

Everyone saw this coming……..except me.

Ever experienced a panic attack?  In the past few years I’ve experienced waves of panic that I was able to talk myself out of….  I mean, I don’t have time for a nervous breakdown.  I’ve always been successful in my positive self-talk…..until the other day.   I cracked.  I mean, I had a full blown Green Mile- John Coffey-  evil expelling type of attack.

There was no particular trigger.  It was a normal day.  I was getting ready to feed Zeta. Then I started to feel dizzy.  This had happened infrequently over the course of the past couple of years, but just this week it had been worsening.  On this day, I couldn’t make it stop.  I couldn’t get a sense of relief.  The images of the room ran in and out and I fell.  I feared I would black out and no one would be here to take care of Zeta.  Then I couldn’t breathe.  I managed to call my mom, but couldn’t get any words out, then I fell again.  Then the wails and screams started. They seemed to emanate from the depths of my bowels.  I was very aware of everything that was going on, but I could not control it. I couldn’t make it stop.  I couldn’t see, I couldn’t breathe.  I couldn’t make it ok. I felt selfish, ashamed, helpless.   I kept trying to tell everybody I was ok, that I could breathe, but I couldn’t breathe…… but in my mind I wondered if I was going to pass out or if they would take me to a mental health facility. Then the bolts of numbness in my arms and legs…..maybe this isn’t a panic attack, maybe I AM having a heart attack.  What if I die?  What about my children, my husband, my parents?

Needless to say I went to see a doctor and we’re working on getting the help that I need.  What I feel most is embarrassment.  My mind was raped, and my soul is still struggling to recover.  What I fear most is that it will happen again.  All I want to do now is stay in bed and crawl under the covers.  They say it’s a battle of depression, but I don’t feel depressed.  I feel as though my body failed me.  That my control left me…..and now I have to pick up the pieces. 

I, of all people, do not have a right to experience anxiety.  I have the most loving husband and children.  A family that would move mountains for me and a team of support that encircles our family every day.    Frankly, other people looking in don’t see it that way.  Doctors were trying to medicate me just after Zeta was born.  My mom has encouraged me ‘to go see about myself’ for quite some time, even some of Zeta’s therapists and care team have subtly encouraged me to do the same……As a matter of fact my mother-in-law started telling my husband to watch me closely two weeks ago because I was going to have a nervous breakdown (little did I know) but I didn’t feel depressed or anxious.  Sure there are moments, but who doesn’t have moments?  This shouldn’t have happened to me.  I’m a self-proclaimed expert in coping skills and self-help techniques.  The queen of calm……..BUT it happened….it happened to me…..and you know what?  I’m going to be okay.

No one thinks panic or anxiety or depression should happen to them.  I’ve witnessed its affects (and effects) first hand.  I’ve seen panic attacks, and now I’ve experienced one. I’ve listened as friends or co-workers talked in hushed tones about their loved one battling depression or a breakdown.  It is real.  I’ve always believed that, but until my own experience I did not realize what an impact it truly takes on your mental AND physical being. It is a very intimidating, isolating feeling.  It can make you physically ill and also make you feel like the most self-absorbed person on earth. It not only hurts you but the ones around you.  So, please if you’re dealing with it please get help – medical, physical, spiritual…..I believe these all have strong components in healing.  If others turn you away or minimize your problems keep looking for help.  Surround yourself with positive energy…..and pray. 

Don’t look down on me for what I have shared.  Don’t give me pity.  Don't go ask my mom or grandma how I'm coping.  Just surround me with love and support.  Love and support and pray for my family…for Stevie, for my boys, for Zeta, for my parents, grandparents and my sister and her family.  We’re all in this together and I know God will lead us through.

PS Please don't take it personally if I haven't responded to texts, phone calls, etc.  I've had my phone and computer turned off and just trying to let my mind and body rest.

Being infinitely patient means having an absolute knowing
 that you're in vibrational harmony with the all-creating force
 that intended you here. You know that everything will happen
 at just the right time, at just the right place, with just the right people.
 Dr. Wayne Dyer

Wait for the Lord; be strong
and let your heart take
courage; yes, wait for the
Lord.

Psalm 27:14

I've officially let Zeta get rid of her no-no's

Only I think she may have thought it was a trick.....She wasn't very sure whether or not she should put her fingers in her mouth.

It didn't take her long to change her mind though.

I spend a lot of time pondering the meaning of a print in my kitchen.......

At some point I thought that I had at least some understanding of how to make things simple....

If life were really simple, I would not rack my brain every day trying to figure out what the latest research says about microcephaly, blindness, developmental delays, chronic illness, seizures, rare multiple congenital anomalies and a host of other baffling medical issues.

If life were simple, I would not be counting the days and weeks between hospital admissions.  I would not worry because we don't have an official name for whatever is happening with our baby.

I would not have that little voice in my head - the one that I hear every time I hear about a new pregnancy.  The one that tells me I must pray relentlessly that this child and family will not encounter the circumstance of anything less than perfect health.

I would not avoid answering the phone when it rings.  I would be able to have a normal conversation with a friend.

If life were simple, I would not fall apart when my husband walks through the door if I've been home alone all day.

If life were simple, I would not spend nights watching each child sleep and  then crying over what could have been or how I've messed up in some way.  I would not worry that each of them is getting the nurturing love and attention they each so richly deserve. I would not worry that each ache or pain could possibly be life threatening, and I wouldn't worry that they have been just as deeply affected by our experiences as I.

No life is not simple.

Not just for me - but for any of us.  We all have days like this.  Granted, some more than others. BUT when you have a problem or a difficult circumstance it IS THE MOST IMPORTANT and the worst possible thing that could be....because it affects YOU, YOUR child, or YOUR family........and then life isn't so simple anymore....

God never promised easy, BUT He does promise never to forsake us.

"Be anxious for nothing,
but in everything by prayer
and supplication with thanksgiving
let your requests be made known to God.
And the peace of God,
which surpasses all comprehension,
shall guard your hearts
and your minds in Christ Jesus."
Philippians 4:6-7

The foundation many have worked to build under me has given me the assurance that I can place my faith in the Lord.  I pray because I have to....I also pray because I want to..... I pray because it gives me solace.  I pray because it strengthens my faith.  Funny thing is....Faith has also strengthened my prayer life. 

Above all, PRAYER SIMPLIFIES THINGS.......

How much more simple can you get than to give it to the One to which it belongs....just as our lives are not our own or problems are not all our own either.

If I CHOOSE to spend every waking moment wrapped in fear.....If I CHOOSE to question every single thing that has happened in my life.....If I CHOOSE to be timid - I LOSE.  Life loses it simplicity and I simply become wrapped up in all of the what ifs.....

For God has not given us a
spirit of timidity, but of power
and love and discipline

2 Timothy 1:7

I tell myself each day I HAVE to CHOOSE to simplify..........

THIS is why -

Isaiah 40:29

He (God) gives strength to
the weary, and to him who
lacks might He increases
power.