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