Feed your soul (and others' too)

Eat like crap.....feel like crap! I keep trying to remind myself of this. My brain gets it, but I don't think my tastebuds do! While I haven't been on a full out binge (yet) I know that I have not been eating right or giving my body the best fuel possible. I've also noticed that my mental and physical capacities are in danger of running close to empty. This is not a coincidence. Remember the old saying, "You are what you eat"? I believe the same holds true with what we feed our soul. I feel like I had been dealing pretty well with my emotional garbage - until just recently. Part of it may be related to the way I'm feeding my body, but I know the other part is related to how I've been feeding my soul. I think they're both heavily entwined. Christmas shopping for a 2 year old should be fun......but when most any stimulation causes concern for invoking seizures which can lead to all kind of autonomic dysfunction - it's not so fun anymore. When that 2 (nearly 3) year old doesn't walk, talk or even really sometimes notice the world around her it's not much fun. When Christmas and all the excitement that goes along with it has always been your favorite holiday and when you think of all the fun your other children are having - then you think of the little one that lies there in bed......well, my soul begins to weep. Not for myself (well, if we're being completely honest it is sometimes for myself) but MORE for the little one. For my baby.... Then the questions come - "why, why, why?" I've been assured that this is completely normal. Yet......yet, when I feed my soul with these thoughts it makes my mental and physical life much more difficult. When I focus on what is wrong I can't seem to see the light. I know that Christmas isn't about presents. I know that Zeta doesn't care whether or not she will get a new pony or hotwheels car or even a baby doll. I think that what matters to her is that she has people who surround her with love. I wish I could have a desire that pure and innocent. I know that I should be thankful for the days we have together. I know that I should be able to fully enjoy every minute of the excitement and wonder with my boys. Still....I can't help but sometimes feel selfish and want a 'normal' family life being able to celebrate doing 'normal' Christmas things and watching my 2 year be a part of it all. Yes, I know that these negative thoughts cloud my soul. ....but isn't this what we sometimes do best? I've had to turn off the tv so many times this week. The shooting in Connecticut is beyond my grasp of reality. I sit and complain and ask God "why" about our life........and then I watch and see the living hell that so many of these people have been through and the others that will continue to go through.....then I feel I have no right to think that my life is hard. Then the people fighting about gun control issues....yes, there were gun used - but they didn't get up and shoot themselves. No, I don't understand the need for assault rifles - but if the thugs and low-lifes in this world have them then I think we should have the right to protect ourselves. Stiffer gun control is only going to stop the law-abiding. Do you think your local gang leader is going to go turn his in? No, his is a life of survival and he will do what he thinks it takes to survive - legal or not. His idea of life is skewed from yours and even if he thinks twice he still does what he thinks he has to do in order to be respected (or loved) or to survive. I do even feel sorrow for the shooter in CT. It is very hard to do so when I think of what he did, but when I do think of it I believe that he had to be totally lost or totally consumed by evil. I don't believe human life was intended to be this way, but since Adam and Eve we have continued to test God....to try him....to ask him to look the other way ....or to just stay out of our lives. It is written that it will all end in death and destruction. Look - just look at the world around us. When I feed my soul with the negativity I fall. I become in danger of giving up. It leaves me susceptible to the evil to the enemy.......BUT......but I have something so much stronger than the negativity I feed myself sometimes. I have the promise of eternal life. I have faith that has been tried and redeemed over and over again. I have one true God and I know that regardless of my questions, regardless of my faults, regardless of whatever happens I am SAVED BY GRACE! Some assume that if you're a bible thumper (or whatever the catchy, crazy name might be) that you think you're high and mighty. ...or That you're supposed to be perfect. Well, I guess some people may be like that, but I don't think that's how it should be or how every self-proclaimed Christian does act. I've had some pretty important people in my life do some things that have really made me shake my head in wonder (and I'm sure people could say the same of me at times). I've cared for people who didn't believe in God - who actually mock God....thing is they've seemed to have respected my beliefs (in direct contact with me anyway). I've been close to people who have made decisions about their marriages and families that I just can't fathom. I just don't understand it. At times I feel like I should just shake them and say "wake up, do you know what you're doing or what you've done?" ...but you know what - I don't think it is my place or my job to understand it. My job is to pray that God leads them in their decisions....that those who have been wronged can forgive and that life is lived as God has planned - not as I think it should be....but you know what else - I've said this over and over - I sincerely believe that no one wakes up and says - I think I want to hurt my spouse - or my kids - (or insert name here) today. I think I want to cause pain for them and for myself. I don't think anyone really wants that. The same goes for homosexuals and mixed race marriages. While these are things that I don't personally stand for I don't understand the pure hatred behind those who are against it. I don't have to agree with it and you don't have to agree with it or like it.....I understand biblical laws and interpretations concerning same sex marriages - but I'm not God. I also understand the 10 commandments - but do we get as bent out of shape about coveting our neighbors property or telling little white lies to save someone's feelings? It's not my place to judge - nor yours....that job belongs to only ONE. In these instances do you really believe that these people wake up and say, "I want to give my parents the shock of their lives." "I want to have to hide my relationship from the world for fear of ridicule." If we all truly abided by the 10 commandments and all the decrees in the bible wouldn't we have a more perfect world? Would any of us have reason to judge? We were formed to be a perfect image, but that was tainted since the beginning of mankind. We can be made new again and are promised a perfect 'eternal everlasting life' - if we accept that invitation. Where is God? That is a question we seem to hear more and more. I can't give you a concrete answer that will satisfy every hungry soul. I can only tell you what I have experienced, what I believe to be true and what has saved me. I can tell you that when you feed your soul with the good things that your whole world is better.... Remember when we were little and dreamed of being Miss America or President? What is the one thing you would do? Stop the all the wars, stop all the hatred and create world peace.......ahh if only it were that simple!

what's happening now

Just a short update to let you know what's going on these days....

Zeta's had another tough week.  We've been working on heartrate and desaturation issues.  She's basically been sleeping day in and day out or "passing out" or seizing.  We're not exactly sure what is triggering some of this new activity, but she has had some upper respiratory 'crud' along with it. 

As usual, we've been in close contact with Hands of Hope and they've been great! 

Today we went to Charleston and met with a few of Zeta's specialists (one of which just happens to be her hospice doc).  I can't tell you how incredibly blessed I feel when meeting with this group.  They made some minor adjustments in her care....but beyond that - beyond that - they show us tremendously individualized care and support!  They ask about home life, about the boys...about our thoughts, concerns and feelings..... they treat Zeta (and us) as so much more than just a patient. We've had some pretty tough conversations with some of them and they take much care in how we approach things. They always respect our feelings and they fight these battles with us! 

Next time you're waiting five billion hours to see the doctor (admit it, it gets pretty tiring sometimes- I know I can complain about it just as much as the next person) just remember that your doctor is human too.  That very doctor may be trying to save another patient's life or trying to comfort a hurting family...they have a lot on their plates too! 

So, today is another day to be thankful.....thankful for doctors, nurses, and everyone else that helps the medical world spin....a day to be thankful for another day with our family!
"When you are grateful fear disappears and abundance appears." Anthony Robbins

prayer

Take time to think...
It is the source of power.
Take time to play...
It is the secret of perpetual youth.
Take time to laugh...
It is the music of the soul.
Take time to pray...
It is the greatest power on Earth.

We have a running joke with our medical team that we shouldn't talk about it too much when Zeta is doing really well because that's just when she will show us a thing or two.

Thing is.....it's not so funny when it really happens.  Last week I shared that Zeta was doing better than she had in a very long time.  Now we're back to continuous seizure and pain control. 

Steven is home with sore throat/cold so I hope it's not something we're going to be passing back and forth.

I suppose this is just another bump in the road for us, but we do appreciate all of the prayers you can muster.

I ask for prayer....a lot.  I believe in prayer. 

I was able to go to church yesterday.  Know what the preacher discussed?  Prayer. 

This life.....our crazy, wonderful, complicated life makes me examine my prayer life and relationship with God pretty often.  You see, when things aren't going well....or aren't going the way I plan then my prayers increase.  I find that I am almost constantly praying.  Sometimes I'm having real, honest conversations.  Sometimes I'm listening.....and a many times I'm pleading........I also know that when things are going well that I tend to slack off in the prayer department.  I don't mean to, but it happens.  That's what I was reminded about in church yesterday.  We need prayers of true thanksgiving..... start our day with prayer.....we should talk to God....and listen.....prayer shouldn't be an afterthought, or worse a last resort.....it should be the beginning......

"O Lord, that lends me life, Lend me a heart replete with thankfulness! "

William Shakespeare (King Henry VI, Part II. Act I, scene i)

Thankful for our crazy life!

Do you ever find that some days are more humbling than others?

Certainly, with our situation I've heard my share of, "How do you do it?"  which sometimes translates to I'm glad it's your life and not mine! LOL  Seriously though, when we hear about other people's problems it does make us a little more thankful for what we have, right?

My cousin was badly injured in a farm accident.  I won't go into detail because that's his story, not mine, to tell.  I've found that he is on my mind almost constantly.  I empathize a great deal with his parents too.  I feel like I understand their struggles.....but I can't really fully understand.  They're dealing with the shock and trauma.  The what-ifs and whys.  They see the miracle of his life, but might question what's down the road.  I see this very strong man that is lucky to be alive.  He can breathe, he can talk, he can eat.  He most definitely has a very long road ahead of him, but I sure hope he realizes how blessed he is that he still has those abilities when many others don't!........... He is full of determination so I know that it won't be long that they will probably have to tell him to slow down in order to heal properly.  Prayers for his continued healing are greatly appreciated!

I've found myself more humbled in my marriage lately too.  I am blessed to have someone who has stood by me and loved me through the good, bad, and ugly. Often, it's easy to say, "Oh, I'd be out the door so fast if he/she did so and so." I say things like that a lot myself.,......but unless you're living that life you have no idea about what goes on........and it is commanded of us to love our partner through everything.  I do realize this is most often easier said than done and that sometimes circumstances may make it seem impossible......we have to communicate.....we have to let our partner know our wants, needs, resentments, wishes and desires.  It is not always an easy road and many times our actions have to be made out of choice rather than desire. I realize just by writing this people will wonder what might be wrong with my marriage or which marriages I'm talking about.....that's not the point-  the point is no one is perfect.  We all make mistakes.  Some people make the most horrible mistakes and then others are left to pick up the pieces.....I don't know what I'm trying to say except that I pray for my own marriage and I pray for the marriage of my loved ones and I pray for the marriages that may be struggling.  I pray for all parts of the family - the husbands, wives.....and mostly the children.  I pray for those who have already been touched by divorce and I pray for those struggling to keep it together.

I guess the final piece of my humbling week would be thinking about the families that have lost loved ones.  Cancer is a horrific thing.  So is suicide.  Disease. Neonatal death and life-limiting illness with no name.  Sometimes it seems as if we're all encompassed.  I grieve for those that have lost......and sometimes I become transfixed on what I may lose one day......but I try to not to dwell there because I know there is a place prepared for each of us where there will be no more pain or suffering.  All of our hearts will be humbled (and it won't take devastation to remind us).  I know that I have been saved by the Grace of God.....if you think that makes me a little loony so be it:)

Finally, we've been blessed to see an almost complete turn-around with Zeta this week.  We've had so many, many months with uncontrolled seizures and just basically a 'shell' of Zeta.  This week her sweet little personality has returned.  She has laughed and played and it has made my heart so happy.  Her brothers have been so sweet to her too....they will probably kill me for sharing this, but one night they played "dolly" with her.  Steven covered Zeta's face with make-up and they took turns letting her 'brush' their hair (really she would just bang their heads with the brush).  All 3 of them thought this was all just hilarious!  I really wish I would have taken a picture, but honestly I was just reveling in the moment!

I hope you take the time to let your heart be humbled today! (or say a prayer for those in need) It really is a good feeling!

Much Love!

..just thanks....

The month of Thanksgiving is among us........

but I know.....

we should be appreciative of each and every daily blessing we receive!

 

..like being able to view things through the eyes of a child....

 

.....the natural beauty that surrounds us....

 

.....a grandmother's love......

 

...a smile....

....and just.....pure  joy!

 

For so much - I am thankful!

 

For nearly 8 months we've watched Zeta battle a general decline and regression.  Admittedly, I was afraid I might never see her true sweet little personality again....but.... this past week she has shown us so many  more smiles!  Now that's something to be thankful for!

 

What are you thankful for today?

Just some thoughts

I get asked 2 questions a lot:

#1 How is Zeta?
No matter how many times I get asked it still catches me off guard.  There are relatively good days....and I love to answer - "She's doing great today!"  Usually, what that means is she is having a much better day than the day before.  You see, with Zeta, it is most often a day to day existence.  We compare this day to the day before and go from there.  Some days are good, some days are bad.  Some days seem unbearable and others make us infinitely grateful. More than likely, if you ask me this question my answer will be - "She's doing ok." or "She's great!" or "She hasn't had a great day."  Any answer other than that will most likely take a few hours to explain:) Just know that we are always thankful for the prayers said on her behalf! 

#2 How are you?
There was a time that I struggled to answer this question too.  I felt I should always answer, "I'm fine."  I mean no one wants to hear any less than that...but truthfully, there were many times that I wasn't fine.... I was just a shell making it through the day/hour/minute.  If you've followed my blog you know what I mean.  Thankfully, I finally realized that in order to be a better mother, a better wife, and just a better person that sometimes I have to take care of my own needs.  What this means for me is that I have taken better control of my health and I take time for me.  Sometimes it leaves me feeling incredibly guilty - BUT in the bigger picture I see that it greatly benefits my children, my marriage, my life. We're always told that in order to be able to love someone else you must first love yourself and that in order to be able to take care of someone else you have to take care of yourself first.  Think about why (on a plane) they tell you that you should put your oxygen mask on before putting it on your child.......the obvious reason is that you are no good to your child if you pass out first.  The same is very true in life.  If your head is barely above water your fear of drowning is so great that you're of little use to the others in your life.  Remember, the saying "If Momma ain't happy nobody's happy!"  So what productive things are you doing to improve your life?

Good Morning!

I've often wondered what Zeta would say if she could talk.  She has taught me so much without saying a word!

Every time I hear this song I imagine it being the type of message Zeta would give us.

WORDS I WOULD SAY

Three in the morning,
And I'm still awake,
So I picked up a pen and a page,
And I started writing,
Just what I'd say,
If we were face to face,
I'd tell you just what you mean to me,
I'd tell you these simple truths,

Be strong in the Lord and,
Never give up hope,
You're going to do great things,
I already know,
God's got His hand on you so,
Don't live life in fear,
Forgive and forget,
But don't forget why you're here,
Take your time and pray,
These are the words I would say,

Last time we spoke,
You said you were hurting,
And I felt your pain in my heart,
I want to tell you,
That I keep on praying,
Love will find you where you are,
I know cause I've already been there,
So please hear these simple truths,

Be strong in the Lord and,
Never give up hope,
You're going to do great things,
I already know,
God's got His hand on you so,
Don't live life in fear,
Forgive and forget,
But don't forget why you're here,
Take your time and pray,
These are the words I would say,

From one simple life to another,
I will say,
Come find peace in the Father,

Be strong in the Lord and,
Never give up hope,
You're going to do great things,
I already know,
God's got His hand on you so,
Don't live life in fear,
Forgive and forget,
But don't forget why you're here,
Take your time and pray,
Thank God for each day,
His love will find a way,
These are the words I would say

SIDEWALK PROPHETS

Happy Friday!!

just a little update

Hmm... where should I start?

It seems there isn't a whole lot to tell....

We received results from the Whole Exome Sequencing from Baylor.  Unfortunately, there was really no new information....which means we still don't have a diagnosis.  I'll admit I was a little bummed.  In the back of my head I still held out hope that the test would give us some mind-blowing revelation about how to treat Zeta and make things all better. 

I continue to hold a lot of hope for our baby girl.....though my hopes have been changing a bit lately.

We've been blessed with such a caring and understanding medical team and family which helps make sometimes impossible situations seem just a little more bearable.

Zeta had an endoscopy Tuesday.  They did find blood in her stomach, but there was no obvious cause.  The doctor told us that it could be mechanical (from all the hardware in her stomach)  or we may just need to increase her meds or it might be infectious.  They did several biopsies and we should hear back from those within a week.

I am grateful for your continued thoughts, prayers, and support.  I often wonder how we would cope without such.  There are many that are less fortunate than us. I know that we are infinitely blessed and that God is continually with us sending us the love and care we need from those surrounding us.


¹⁴ When Jesus saw this, he was indignant. He said to them, “Let the little children come to me, and do not hinder them, for the kingdom of God belongs to such as these. ¹⁵ Truly I tell you, anyone who will not receive the kingdom of God like a little child will never enter it.” ¹⁶ And he took the children in his arms, placed his hands on them and blessed them.
Mark 10:14-16

Today...it's ok

What if we never experienced pain?

What if life worked out exactly as we planned for ourselves?

Would that always be a good thing?

I know looking back that I never would have chosen the way my life has been played out.  No one wakes up and says....hmm....  I would like to be just middle class (feeling like sometimes you border more on 'white trash')...... not  I'd like to have a sickly child......  nor I'd like to spend a lot of time at hospitals......Nobody says I'd like for some of the people I hold close in my heart to  be the ones I meet at some of the most frightening times in life.....   or I'd like to watch my child have ReLeNtLeSS SeIzUrEs.  nor do they say -I'd like to worry about whether or not my other children feel neglected.......These are NOT things I planned in life.

With that said, I don't know whether or not I would change a whole lot....at least not the lessons I've learned, not the people I've met, not the love I've felt..... - perhaps the pain, though......DEFINITELY the pain.....BUT without the pain - would I truly appreciate the little things (heck - even the big things)...would I feel as much compassion for others?  Would I appreciate that wealth doesn't come in dollar bills?  Would I truly understand the meaning of true - really, very true unconditional love?   

If things were always easy would we have reason to hope for anything more?

My ramblings may not make much sense this morning.....I'm just.... still searching.....looking for the meaning of it.....trying to understand this path upon which we've been propelled.  I know it may not be for me to fully understand now....and for now it's ok with me.  Tomorrow may be different.....or it may not.....it really doesn't matter.  What matters is that my hope still resides in Him and that right now I am eternally grateful for this life - for my husband, my boys, my family, my friends, for Team Zeta!

prayers and hope

All I've wanted to do is scream and let everyone know what a rotten day Zeta had yesterday.  If she wasn't sleeping she was seizing.  As I know all too well, that is not a great thing  - at all.  This morning seemed to start off ok, but after a couple of hours she was back at it again.  It's all very frustrating and so disheartening at times.  If you're a parent, you know that you cannot stand to feel as though there is nothing you can do for your child.

Fortunately, my focus has kindly been re-directed.

Take a look at this: (be sure to read the article and notice the date too)

 

 

On top of this, I just received an email from the Hypothalamic Hamartoma coordinator at Barrows asking to share our experiences with another family that is contemplating surgery. Again, I was reminded of how God has shown himself throughout every step of our journey.  Would I do the surgery again?  YES.  Did it help?  YES, it gave us nearly  5 months seizure free and gave us a chance to fully learn more about our little girl.  We don't know if the problems she has now are related to the suspicious inoperable area left in her brain or if it was something set into process from the HH previously or something stemming from her microcephaly or any of her other health problems. We just don't know.   For me, it used to be mostly about not knowing and wanting to know so we could fix it.  Now, it's just about trying to make her comfortable!

 

....but I've digressed far from my point.  The email made me realize that this has definitely been a process for all of us...and that although we've encountered many trying times we've always made it through......and through every step - even before Zeta was born- we were reminded that we're not alone.  We've been saved by grace and this life.....this place...this moment is just temporary.

 

Zeta is resting now.  Pray for more relief.

 

 

 

Psalm 56:8

Zeta is 2 and a half!

We had a big surprise yesterday!

Some special friends stopped by to celebrate Zeta's 2 and 1/2 birthday!

Unfortunately, she was not feeling well - and slept the whole time!

 

Regardless, the party went on and the boys had a blast!

 

 

We finished the day by making a special painting (and even painting each other!)  However, both my cameras died before I could get pictures:( 

I spent the evening counting our many blessings! I'm so thankful for Hands of Hope, the care they provide, and the purposeful memories they help us create!  

 

"Of all earthly music, that which reaches farthest into heaven
is the beating of a truly loving heart.”
Henry Ward Beecher

another week

Just another week here at the Brabham house....

At the beginning of the week we were discussing the possibility of re-starting some of Zeta's therapies because she seemed to be getting better.....but....by the end of the week her seizures had increased, she had become quite agitated and she ended up needing morphine again.  Thankfully, yesterday was a better day so I'm praying it continues.

These are the times that I begin to question and wonder about the why of it all.

I don't know why.

 and I suppose it doesn't really matter......

Sometimes I ask for answers.  Sometimes I just pray for peace.

I suppose what matters is that I understand more and more everyday what a true gift this life is.....

What matters is that I know that I could never do this alone.  That I'm surrounded by God's grace and a whole heck of a lot of people that love us and care about us!

Now, let's talk about sweetness.........

Chancelor decided that he needed to help Zeta feel better so he took out the Boo Boo Care Kit....

 

and he covered her with Boo Boo Bandages

 

and told her she would be all better!

 

I wish it were that easy....

and wouldn't it be great if we all always seeked to help others and see the positive? Don't you think it would minimize the pain, suffering, and conflict we all struggle to conquer?

 

 

Today . . .

Today I smiled, and all at once

things didn’t look so bad.

Today I shared with someone else,

a bit of hope I had.

Today I sang a little song,

and felt my heart grow light,

And walked a happy little mile,

with not a cloud in sight.

Today I worked with what I had

and longed for nothing more.

And what seemed like only weeds,

were flowers at my door.

Today I loved a little more

and complained a little less.

And in the giving of myself,

I forgot my weariness.

Unknown

 

 

 

 

 

Thankful!

Thought I would share this awesome  message from a card I received from a sweet girl last week.....I'm sure there are a lot of others out there that need this as much as I did......

They say what doesn't kill you makes you stronger.  Well, what if you didn't sign up for extra-strength training?  What if you'd rather catch a few breaks once in awhile?  Is that so much to ask?  At some point, you'd think you'd be entitled to a free pass or two:  Skip this challenge.  Avoid that crisis.  Delete those problems.  It's not that you're not strong or that you don't have what it takes to get through this.  You are, you do, and you will.  But you've built enough character already, and it's time for things to lighten up a little!I know it's not really my call, but if I were in charge of life's wheel of fortune, you'd get a free spin.  And I'd be right there, cheering you on!

~Linda Barnes

Let me tell you what made this card even more awesome for me.  Steve and I had been planning on taking the boys away on an overnight adventure some time before school started.  I've been just a little skeptical about the whole thing because I've never left Zeta - and her health status is so unpredictable.  After much thought and planning and working to ensure she would have great care while we were gone I finally decided it was okay to take the plunge... Then just a couple of days before we were supposed to leave she ended up in the hospital again.  During that admission we came to terms with some pretty life altering things for us and at times it seemed like the whole world may spin out of control - like we were living a dream - or rather a nightmare.....but in the same token we knew that although we felt out of control that God had everything in control and that the most important thing for us to do was to trust Him....it was then that we began to feel and understand a new kind of acceptance in our journey. 

I had all but forgotten about our plans for a fun night away with the boys until this card came in the mail.  It was then that I understood how important this outing would be....for the boys....for us....for me....

I'll admit it was a little difficult.  I think I called to check on Zeta 5 times before we made it to Charlotte....but once we were there I became so transfixed on the happiness of the boys that it was all definitely worth it !  (as for Zeta - I don't think she even realized we were gone- they say she slept most of the time - whew!) 

I only became really emotional in the evening when watching a little girl toddle around exploring her surroundings with unsteady steps.  It was then that I yearned most to have Zeta with me....to have my family together....to be able to do 'normal' things....

As I continued to watch this fascinated little creature I began to realize that although there were certainly things she was able to do at age 1 that my two and a half year old can't do I also  realized that there were things that were similar....like the way she looked around in wonder....the way she seemed to take in the most ordinary things as the most thrilling and most of all the way she laughed and giggled and captured and intoxicated everyone close to her with her unadulterated zest for life.  Yes, that's what my baby does and there won't ever be a day that goes by that I am not thankful for the days I have with her or my boys!

So, you know what?  I'm glad Steve and the boys and I were able to get away for those 27 hours.  I'm glad we were able to make those memories and I'm glad that I was able to come home to be reminded about what a true gift every day is.......

Where is your HOPE?

I just can't understand how anyone can not believe in Divine intervention.  Perhaps it's because I've been so focused on looking for it that I more readily accept it.  Maybe it's because of our life's journey.....  OR Maybe it's just because over the past couple of years I've learned how to listen.

The past couple of months have culminated in some pretty big decisions Steve and I have been struggling with emotionally. We ask pretty much the same questions every day.  We wonder what the future holds.  If you could look into my heart and if you could hear the conversations we've been having with all of our support staff you would fully understand the importance of what today's daily devotional means for me personally....

Three words..........Always........Never...........and.........Hope........

My HOPE resides in Him and the comfort I pray to continue to receive.

Our Daily Bread

Monday,
August 6, 2012

Always

Read: 1 Thessalonians 4:13-18

We shall always be with the Lord. Therefore comfort one another with these words. —1 Thessalonians. 4:17-18

I love the words always and never. They hold so much hope! I would like to think that I could always be happy and that life would never fail me. But reality says that I won’t always be happy and that the things I hope would never happen just might. So, as good as these words sound, they struggle to live up to their potential—unless you are thinking about the promise of Jesus’ presence.
To a group of troubled disciples who feared facing life on their own Jesus said, “I am with you always” (Matt. 28:20). The writer to the Hebrews reminds us that Jesus said, “‘I will never leave you nor forsake you.’ So we may boldly say: ‘The Lord is my helper; I will not fear’” (Heb. 13:5-6). And the apostle Paul assures believers that after death, “We shall always be with the Lord” (1 Thess. 4:17). How encouraging!
No matter how scary our journey may feel today or how hopeless our future may look, the assurance of His never-failing presence can provide us with the courage and comfort to make it through. And best of all, when this short life is over, we will always be with Him. No wonder Paul encourages us to “comfort one another with these words” (v.18). — Joe Stowell

Jesus said He’s always with us,
He will never leave our side;
Someday we’ll be in His presence
Where forever we’ll abide. —Sper

Confidence in God’s presence is our comfort.

Searching

Transition.  Acceptance.  Denial.  Hope.

Continue seeking a cure at any cost.....Make every moment bearable and more comfortable?

How do you find a cure or treatment when you can't even pin point the problem?

How do you fix what may not even really be broken?

How do you fully accept what may or may not happen....even though at some point it is really inevitable?

How can you make your heart and mind agree with what you feel is best?

If you feel like you've been running in circles and nothing is really changing then is it ok to stop running?

If you continue to look for answers and seems like sometimes it does more harm than good then it really is better to just let it be - right?

BUT....What IF?

I know this is a big jumbled mess of a post, but I can't help it.  My thoughts have been a big jumbled mess for a while too.

Thankfully, Zeta seems to be having a good day.  Yesterday was good too.  Her seizures (and the autonomic dysfunction) are controlled...for now....the thing is her latest VEEG has "not been encouraging"....she hasn't actually had any seizures since we've been here, but her brain is apparently unhappy. (for lack of a better word).  The bloodiness from her trach and belly have once spontaneously resolved again too....it's a scary and unpredictable cycle....with no answer to the repeated question of why....

Don't get me wrong...I am INFINITELY grateful for the medical care we receive.  I know that we could not ask for more.  I know, without a doubt, that these people truly care about my child.....I'm also smart enough to know that sometimes there is only so much that humans can do.  The rest is up to God. We spent the greater part of yesterday having just these type of conversations with numerous doctors and staff. I am thankful that they know Zeta well enough - and know us well enough - to give open, honest, and thoughtful opinions about Zeta's treatment.

These conversations have been tough. 

I find myself wishing I could disengage.......but I've learned that coping mechanism quit working for me some time ago.

I feel like a broken record....but please continue to pray for Zeta.  Pray for our family. Pray specifically for our decisions to be led by Zeta's needs and not our own.  Pray for her home care team and her team here also.  Pray for our boys, our parents, and grandparents.  Your care and support are  beyond measure.

The truth is that our finest moments are most likely to occur when we are feeling deeply uncomfortable, unhappy, or unfulfilled. For it is only in such moments, propelled by our discomfort, that we are likely to step out of our ruts and start searching for different ways or truer answers.

M. Scott Speck

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

Home again!

Stevie found this in the paper and left it out on the table for me last night....

talk about encouragement LOL!

Sometimes you have to resign yourself to find some humor regardless of your situation!

We came home yesterday.  Zeta had a good night and seems to be having shorter periods of agitation.  We haven't seen any seizures today and right now she is resting.  We never found a clear answer as to where the pain was originating and all the blood from her trach seemed to resolve on its own.  They increased one of her seizure meds and sent us home with some pain meds....so from all of that something seems to be working!  I'm anxious to hear input from the BNI team regarding their thoughts on the seizures.

I want to thank everyone for their continued prayers and support and all of your words of encouragement.  We are continually humbled by the kindness we are shown! Our families, friends, acquaintances and even strangers have made this difficult journey much easier to travel.

We're thankful for the wonderful medical support we receive.  We're thankful for our home nurse, for Hands of Hope, all of Zeta's specialists and hospital doctors.  It still amazes me how much Zeta (and our whole family) is treated with true care and concern. I'm sure in makes a huge difference in how we are able to handle things.  Zeta's hospital nurses and RTs were as sweet as ever. They all worked hard to help us muddle through Zeta's pain....Anna and Chuck were especially helpful and empathetic:)  They have an "APPLAUSE AWARD" at MUSC.  There have been a couple of times that I've attempted to nominated the whole ICU and PICU, but I'm not sure whether or not they accept those nominations because it seems to be an individual award..... so I'm going to make it my goal to try to eventually nominate each nurse, therapist, and doctor that has worked to make our lives better.  They deserve it! I can only express sincere gratitude for the  outstanding care that we consistently receive!

So....we're home.....and we'll continue to work to make life as comfortable as possible for Zeta.....and to strengthen our bonds as family.  Thank you for keeping us in your prayers!

Still searching...

Quick update:

Zeta had a better night. (Thank you morphine!) However, she awoke all miserable again his morning so she did get more morphine.  The G-J tube seems to be going well.  She tolerated the small drip of pedialyte over night so we plan to switch to a small drip of formula sometime today.  Her bowels have finally started to have some movement and we haven't seen any more blood from the trach or her feeding residuals.  She continues to have issues with seizures and still seems to be in a good deal of pain.  They've given a loading dose of one of her seizure meds and increased the usual dosage.  Her neuro team in AZ is meeting about her on the 23rd so hopefully with so many good heads (MUSC and PCH/BNI) together we can come up with a better seizure plan or maybe even figure why things went so well for so long and now seem to be going back to how they were prior to brain surgery.  They're continuing to run various tests and look for a source of the pain/agitation. Thank you for continued prayers!

what a day

I'm thinking if I start and continue this blog now it's going to turn into one big rant or rave with a pity party to follow.

Let's get this straight - I am not divulging any of this to get sympathy.

I'm venting because I feel like I need to SCREAM at the top of my lungs about how unfair life can be.....and not necessarily for me, but for my children!

Zeta had a horrible night and today was not much different.  She just seems to be in so much pain.  It is so unlike her to be so agitated - especially for days on end.

She's had loads of diastat, versed, and tylenol over this past week, but nothing has  really seemed to help.

The medical staff has been working hard on trying to figure out what's wrong.  ENT scoped her this morning, but didn't find anything too impressive.  They could see some bloody secretions, but no active bleeding to give them any indication that all the blood that has been coming up out of her trach is from her upper airway.  (I do have to add as a positive side note that she has not had the large frank bleeds since we've been admitted).  Anyway, it's possible that it was something that resolved on it's on or it could be coming from the lungs.  Pulmonary stopped by  and told us that if the bleeding started again we could do another bronch and look at the lung tissue.  Hopefully, the blood is behind us. Zeta's labs aren't really showing anything remarkably different than what they usually do - just the usual anemia, dehydration, etc., but she has still been in an obviously large amount of pain.  They've ruled out uti and pancreas issues.  She had another renal ultrasound and it wasn't dramatically different from the last.  The PICU docs explained that sometimes kids with chronic health issues just have digestive systems that eventually 'give out'- basically decide to quit working for good.  We've dealt with feeding issues in the past and have discussed the possibility of changing her feeding tube from a G-tube to a GJ tube so today Zeta had the GJ placed.  Basically the feeding will go past her stomach and should be easier to tolerate......fingers crossed.  We just started a very slow drip of pedialyte and the morphine Zeta got earlier seems to finally be helping her be calmer than she's been in days. We still have no clear cut answers and we still don't know if the GJ will be the answer to our problems....Zeta was still trying to throw up on the way to radiology before they placed the GJ - and that was without any food in her belly since Wednesday morning....and there's still some flecks of blood in her residual. Please pray that it helps and that Zeta's pain and agitation will cease.

Well, that's the Zeta part of the day....now I need to tell you the Chancelor and Mommy part of the day.  At the very same time that Zeta was being taken down for the stomach studies and renal ultrasound Chancelor was on his way to the doctor with a big, black, bulging 'thing' on his leg.......MRSA.......AHHHHHH......My first thought was - "oh wow, I need to go clorox my whole house.....my second thought was -'nah this ain't real". It didn't really sink in about what was actually going on until my mom told me they had to cut out the infection and pack the wound.......Can you say LOST IT????????  I mean I had two children having two pretty important things done at the same time and I couldn't be there for Chancelor.  I felt like I deserved terrible mother of the year award:(  I couldn't quit crying about it......until I saw him.

What a brave boy I have......When I caught up with him at the store he was just as happy as could be....he just said he really didn't want to talk about it....Needless to say he was showered with lots of love (and a few toys)....

...then we took him to Krispy Kreme where he had the best time enjoying his doughnuts....

I am so thankful for my mom.....she held my baby through his pain and made everything ok when I couldn't be there!

I'm thankful for Zeta's nurse today....she encouraged me through my  melt-down and even made me laugh at her antics.....

I'm thankful for hospice and the support they give......

I'm thankful for all of my friends and family and God above - all the people that give me sanity and bring me back to reality......

I'm thankful for a special visitor today who is in the hospital with her own little one (after heart surgery) but still made time to come check on us.....as she said - there's no way to fully understand this life until it's actually yours............

I'm thankful that I can actually make it through my rants and see the other side.  I know how much even this moment means....and for that I'm thankful!

Get by with a little help....

My view tonight.

Boy, I haven't missed these nights in the hospital.

It's been April since our last admission (woo hoo)!

That's partly in thanks to Zeta's home nurse and the help of these two ladies from Hands of Hope:

It kind of looks like we were having some sort of late night techno party.....

It was late.

Much later than midnight before they got to leave.....

but we weren't having a party....

Really, we weren't.....

These two sweet girls were up late last night helping me keep my sanity and helping my baby girl stay out of the hospital one more night!

Unfortunately, Zeta had other plans (she usually does)...

She decided she needed to share the love with her friends at MUSC (see - they love her too).

Ah well.....

There's a possibility of a uti (that's nothing new, seems to be the usual for Zeta sometimes)

She's been bleeding from her trach

and

 from her tummy.

She can't tolerate her feedings and she's been just misreable!

Potassium was dangerously low again (even with the supplement she's on)...

Seizures have been a little crazy!

And I don't really want to talk about it.

(and technically that's nothing new for me either...I don't like "talking" about anything that worries or upsets me.)

...but I'm not 'talking' about it.

I'm writing about it.

I know there are always lots of prayers for my sweet baby girl (and our whole family).....but I'm asking again!

2 Corinthians 4:16-18

¹⁶ Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. ¹⁷ For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. ¹⁸ So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.



She likes to stand!

Take a look at this!!

My baby is standing.  That's right, standing!

and here.....her big brother is teaching her the finer points about Transformers.....but he did give in and let Zeta's baby play too!

Thanks to funds raised by Team Zeta we were able to purchase the Bantam Sit to Stand.  I cannot put into words what I felt when I saw Zeta stand for the first time.  It opened a whole new world for her and she knew that something was 'different'!  Steve agreed with the enormous feeling of pride, but he said that at the same time it was disheartening that we don't know if we'll ever see her stand on her own.

We've been working to get approval for the Sit to Stand through insurance, but we had already been over six months into the process so we decided to use some of Zeta's funds for the purchase.  So far we're happy that we did!  I understand the idea of 'medical necessity' and a lot of the red tape with insurance, but what the executives behind the desks making all the rules don't realize is the need for quality of life for children like Zeta.  Anything that would IMPROVE her life is something that we need - and we need it like yesterday.

Children like Zeta don't  have the luxury of waiting..... and any moment that can bring and enhance experiences has potentially vast benefits.....which makes me think of other children who don't get the proper medical/other care they need due to dictatorship and partnerships between insurance, companies, and health care systems.  I would consider our family seriously very lucky in this area.  Zeta is covered by private insurance and a medicaid waiver for disabled children.  All of the drama surrounding the current health care legislation and crisis certainly weighs heavily for us on both sides.  There are certainly things that would have had to been done differently had we not had private coverage for Zeta and there are many ways that the medicaid coverage has kicked in to alleviate many of the financial burdens...still would you believe there have been times we've had to pay hundreds of dollars for a certain medication that Zeta needed, but could not get coverage through either party.  Due to her unique make-up Zeta sometimes has some -let's say, different  medical needs.  I've been through trying to wait a day or two for the authorization for payment to go through with the pharmacy before getting the medication but then when we ended up with an emergency admission  a few days later because she had not had proper treatment (the medicine we were waiting on) I decided I would never ' wait' on anything ever again if we there were any way at all that we could help it.  Zeta's nurse and I were discussing the issue of Zeta's everyday medications.  We estimate the cost to be close to $10,000 a month.  Yes, you read that correctly - TEN THOUSAND dollars per month (no that's not out of pocket - what person could afford that?).  Sounds crazy doesn't it?  But I can't help thinking of all the babies....all the children that are uninsured, under-insured- or who have parents who haven't learned to navigate the system or who just don't care.  It's heartbreaking.  We're very fortunate in the fact that we've been able to be with Zeta through every admission and am able to help care for her at home.  We're fortunate that we've developed strong relationships with all of her doctors, nurses, and therapists.  We're fortunate that we have PSA and the good people at Hands of Hope.  We're fortunate that we have the support to make this a reality and that we are able to give Zeta the best life possible. None if it would be possible on our own strength alone.  God is deserving- first and foremost...then our families.....our medical families....and all of our friends and the network of Team Zeta!


Well, so much for a short post - I thought maybe I would move toward making my posts actually more 'blog' like - whatever that means....you know a short thought for the day everyday?  I don't think that's possible for me.  I get on a topic and just keep going and going...and going.... so maybe I'll stick to my 'short story' versions.  For example, this post was intended to be a snippet of Zeta in her stander and it turned into me getting onto my insurance soap box (at least I didn't get too carried away!)  I'll step down now....and we'll see if I get any better with the short blogs or stick to the story stories!

And the LORD said, Behold, there is a place by me, and you shall stand on the rock.

Exodus 33:21

Exciting. Excrutiating. Painful. Insightful. Thrilling.

Five words that make up the roller coaster ride of this week......(and our lives!)

We've spent the week at the beach.  Zeta's nurse came and stayed a few days too.  During that time Stevie and I were able to spend a lot of quality time with the boys.  We went boating, ice-skating, and shopping - among other things.  We had so much fun together and were happy to finally be able to do some fun family things (while not having to do it under the guise of a hospitalization). 

 It was a much needed reprieve for us all..........except there was one thing missing.....a pretty big thing.......our daughter.

In the midst of being so thankful for the time we were spending together doing fun things it caused me to pause and think about our life 'before'.  These were normal family things we used to do together.  Now, I'm much more appreciative when we're able to enjoy such blessings.   However, I still have this intense aching in my heart that my baby girl can't enjoy the fun with us....like somehow, we're still not complete.....she's here...she's home, but she can't go out and enjoy things like other 2 year olds.


There are a million things I should be thankful for....like, perhaps the fact that we are managing much more of Zeta's care at home....we've had a couple of calls this week in which doctors were close to asking us to come in, but for now we're still holding our own.  I don't believe we'd have that opportunity if it weren't for the support and care of Zeta's nurses from PSA and Hands of Hope. 

Another thing to be thankful for?.....we wouldn't be able to have a somewhat 'normal' vacation if it weren't for my parents allowing us to overtake their home - fill it with our mini-mobile ICU unit complete with equipment and medications and nurses coming in and out.  We would not have been able to enjoy time with our boys if it weren't for Zeta's daily nurse agreeing to come work with Zeta at the beach........maybe we wouldn't even have the right to care for Zeta at home if we didn't live in a free country.....if so many people didn't put their lives on the forefront to ensure freedom for all of us.....freedom to believe as we choose......


Of course, by now you know how I choose.  I choose hope.  I choose faith. I choose God.  Does it mean I'm perfect? NO   Does it mean my life should have no obstacles? NOPE  Does it make me better than you? nu-uh   What it does mean is that I choose to believe that God is real.  That everything in our earthly life has meaning and reason.  I may not understand it.  I may not always like it.  I might even annoy the mess out of God by questioning it sometimes, but you see- this is where faith steps in.  I can have honest conversations with God and throw my fit at the seeming unfairness of it all.  I can question.  I can weep..... because in the end.....in my heart.....I choose faith....and that faith leads me to believe that none of this is in vain.  That it was all taken care of many years ago up on a hill on a cross.   There are constantly things working that are unseen and so much that I've already known and experienced.  I choose hope and I choose to know that pain will one day be erased completely.  I know that I'm not alone and I see (at least partially) how God has been at work throughout all of this.

We used to have a pretty normal life.  We did normal family things.  We went places together.  We played together.  We felt we had it made and we were thankful (or so we thought).  Our life now is different.  It's definitely not what one would call normal, but .... believe it or not.... there is so much more to be thankful for.  Sure, there are moments we find ourselves wishing it were different....but for me atleast... there has been a lot of growth, a lot more nurturing, a lot more understanding and a heck of a lot more thankfulness for all that we have....and much more understanding and love.  A lot less focus on the material and much more on the spiritual....and the love in our lives.  They say being thankful and having faith is easy when everything is going well.....it's not until that faith is tested that you find out who you really are.....I believe there are no truer words.  

For me, I've never had a problem proclaiming my faith.  However, it wasn't until I felt completely broken that I truly realized how much faith is a choice.  When your world comes crashing down you ultimately have two choices.  Continually curse the force that drove it and wallow in the sorrow or choose faith....choose that that very same faith leads you to what it is you need to learn. Choose not to be beaten.  Choose to follow Him.  It doesn't mean that everything magically falls into place or gets fixed.  Faith doesn't guarantee earthly healing (I know better than some that we, as humans, wish that it did!) Faith is never being alone.  Faith is being able to make it to the next day when you absolutely knew that this day would kill you.  Faith is choosing to hold on to Him even if you're not sure.


I know a little about faith.  I know I would not cope without it.  I know its what drives me. 
I know that faith has made me more appreciative of my life and my family's situation.  It is mine and I own it.  I take responsibility for it. I will continue to choose faith and choose hope.  I will continue to be thankful for all that we are and all that we have. 

Without our loving families and extended family our lives would be much more difficult.  Without the medical care Zeta receives we would be in a much different situation.  Without the doctors and nurses that let me cry on their shoulders (without telling me I'm crazy) I wouldn't be able to continue being Zeta's strongest advocate. Without the all the therapists we would lose another layer of support.  Without you - the one reading this- I wouldn't have anyone to share our story. Yes, my view of life is much different now than it was just a few years ago...........and I wouldn't have it any other way!