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!!