Making Memories

We made some memories this week! We could have been in Timbuktu, singing songs around a campfire, and I couldn't have been happier! We had all 3 of our children together enjoying a somewhat typical family vacation.


Someone posted on facebook today, "The things you take for granted, someone else is praying for. Be thankful." There are moments when that exact thought hits me like a ton of bricks. For instance, during one of the parades in the magic kingdom they're shouting out things like, "Is it your birthday, anniversary - are you making FAMILY MEMORIES???" I've seen that same parade a few times in my life, but at that moment I thought I was going to have to run away to hide all the emotion that hit me unexpectedly. Tears flooded my eyes and I realized just how BIG this outing was......





It took a lot of people, a lot of preparation, and a whole lot of prayers to get us to that moment.

Odessa and our friends at Hands of Hope made contact with a Hospice group in Orlando and shared all of Zeta's information so they could be prepared in the event of an emergency. Traci, Zeta's respiratory therapist, stocked us up with back-ups of Zeta's supplies and got in touch with the medical supply and hospital in Florida. My brother-in-law equipped my SUV with enough electricity to supply a small house (which we needed to maintain all of Zeta's equipment on such a long trip). My parents provided a ride for Steven (We ran out of room in my vehicle - and we looked like the Beverly Hillbillies) They also gave the boys a couple of extra special outings!

Zeta loved the loud music all around Disney. There were lots of times she seemed to be trying to get out of her stroller and dance (oh how I would love to see her really dance)!




I have no explanation for how well she did throughout the trip - other than the strength of tons of prayers. We spent a pretty substantial amount of time at the Magic Kingdom Thursday and Zeta had no problems. She spent the rest of the time at the resort recovering with her nurse, Lavonya.

On the way there, I was a little nervous. This was the biggest trip we had made with Zeta (besides to Arizona for her brain surgery and that was via medical flight). I was worried about her getting sick,increased seizures, equipment malfunction, etc - you name it. I tried to remind myself that there was a lot of planning that went into this and that we had covered every possible scenario...the rest was up to fate - or should I say faith :)

We were about 30 minutes from home and in my mind I was thinking, "I can't believe we're actually doing this!" All the what-ifs started creeping up then I looked and two little words caught my eye:





If you can't read it, the top one is an air freshener that says, 'relax'. The bottom one is a silver charm that says, 'faith'. Now, you tell me - was that a message meant just for me in that moment or what? The necklace and charm were a gift from a friend shortly after Zeta was born. It has been on my rear view mirror every day since then. The air freshener has been in my car for a couple of weeks. Kind of strange but I never really noticed or read their messages together - but on Wednesday the message was perfectly clear - Relax, and have faith! Stevie thought I was a little crazy taking a picture of my air freshener, but I just wanted more proof to show you the story of the miracle of our lives!

Zeta met some of the princesses. (Her brothers did too - no matter how RELUCTANTLY! I wish I could share THOSE pictures, but I'm afraid they would die of embarassment!)



Yes, we had quite an adventure filled time. Oh, did I mention that this was actually a work trip for Stevie? We just tagged along.......and so glad that we did! Zeta is glad to be home.....I forgot to tell you - she got her very own magic wand too.......


Much love!

We've been blessed with an awesome couple of weeks with Zeta. I could go on forever bragging about how well she has done, but you know she doesn't like the bragging too much so I'll just share her 3rd year video instead. Follow the link!
(You may have to copy and paste because blogger isn't cooperating:)

http://www.youtube.com/watch?v=GOW9Y8OIqkY

Broken or Content?

Philippians 4:11 “Not that I speak from want, for I have learned to be content in whatever circumstances I am.”

Think about it - When have you been the most content? Has it been after you've been the most broken?

For me, I definitely see a connection. For me, I only became the most content in my life after I was the most broken.

I found that I appreciated more what I had when it was the most threatened. I was so broken that I felt I'd never be whole again......but

BUT

I realized that God I finally listened to God. I began to understand some of His promises:

"And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away." Revelation 21:4

Until I was broken, I don't think I ever fully grasped the feeling of contentment. Heck, I still struggle with it some even now. You know, the 'grass always seems greener on the side'? We struggle with trying to get to the next step, the next best thing, blah, blah, blah that we fail to enjoy the here and now.

So, seriously - should it take being broken in order to be content. Or should it take watching someone else being broken in order to be appreciate what we have?

Do we become content when it seems as though it's the only choice we have?

What I mean is this......I can look back on my life and figure out exactly when I finally understood how to be content - I mean fully content - peacefully.....It took almost losing my daughter - or living in a constant fear of losing her that I finally gave EVERY single thing to God. I gave every worry, every praise, every concern, every plea - EVERYTHING to Him. I had no choice, but to give it to Him and choose to try my best to appreciate every aspect of life on earth. If not, I would have gone absolutely crazy....living a life like this is not something any human can do alone - or even with a terrific support group. I'm pretty sure it's called faith.....and although there are days that I think - or rather I KNOW that my faith is more absolute than others....I still have that faith. The risk of losing something so precious increased my faith 1,000 fold. It made me more content with ALL of the GOOD in my life and less critical and demanding of things that I don't have.

I think that once you've been really broken and the healing begins that you truly want to do what you can to stop others from being broken - from feeling a pain like that. You want others to see what you see and you want others to be content.....or at least that's how it is for me. I've always waxed and waned with wanting to 'save the world'. I think we all have that in us somewhere....but truly, I want others to love and appreciate and not have to endure pain or suffering in order for it to happen....and it is a more pure feeling for me now.

The strange part is that some times it takes life challenges to make people fully understand it (like myself).

Other times, people get stuck in the brokeness. Some people become broken and lose hope in ever being whole again. They are lost. They don't believe anything could be better. They are cynical and feel unloved. Life is unfair and they are just pawns playing a game here on earth with no hope of eternal freedom.

How do we change that?

We love, encourage, support. We keep telling our stories. We quit judging and pray. We love the broken because they need it the most. We become content with our own lives. We trust. We have faith.

All the proof I need is the story of my life!

prayer

It seems as though it’s been forever since I posted!

I’m very happy to say that Zeta had a really good couple of weeks!! She has smiled and played and been so much more alert. We have been so excited to have this time with her. This past week she hasn’t done as well, but she is not officially ‘sick’ – just quite agitated and we can’t figure out why. I’m hoping maybe it’s just been the change in temperature. Please pray that she will soon be over this little spell and we’ll be back to enjoying her sweet smiles again soon!

On that note, I feel that I must share today’s Daily Bread devotional


There’s Power

Read: James 5:13-18

The effective, fervent prayer of a righteous man avails much. —James 5:16


When my sister found out she had cancer, I asked my friends to pray. When she had surgery, we prayed that the surgeon would be able to remove all of the cancer and that she wouldn’t have to undergo chemotherapy or radiation. And God answered yes! When I reported the news, one friend remarked, “I’m so glad there’s power in prayer.” I responded, “I’m thankful that God answered with a yes this time.”

James says that “the effective, fervent prayer of a righteous man avails much” (5:16). But does “effective” and “fervent” mean the harder we pray, or the more people we ask to pray, the more likely God is to answer with a yes? I’ve had enough “no” and “wait” answers to wonder about that.

Prayer is powerful, but it’s such a mystery. We’re taught to have faith, to ask earnestly and boldly, to persevere, to be surrendered to His will. Yet God answers in His wisdom and His answers are best. I’m just thankful that God wants to hear our hearts and that no matter the answer, He is still good.

I like Ole Hallesby’s words: “Prayer and helplessness are inseparable. Only those who are helpless can truly pray. . . . Your helplessness is your best prayer.” We can do helplessness quite well. — Anne Cetas

Lord, I’ve been taught many things about prayer—be
specific, be bold, be surrendered, be strong in faith,
be persistent. Today I recognize my helplessness and
Your power as I share my heart with You. Amen.

Prayer is the child’s helpless cry to the Father’s attentive ear.



I firmly believe in the power of prayer. I believe that God does listen. However, I also firmly believe that God’s plan may not always be the same as ours. I believe that things happen for a reason and that many things lie beyond our understanding.
One day Stevie and I had some well-meaning visitors (I assume they were well meaning – if not I cannot fathom that someone would be so cruel). They essentially told us that Zeta was not well because WE had not prayed properly……Somewhere in our hearts we did not firmly believe that she could be well. That God wanted her well and that we had to make it be so. They told us that MAN was granted more power and would do greater things than GOD ever did. Now, they didn’t just come out and say all of these things so bluntly (Well, they kinda did)…..They intertwined them with our very own beliefs about God. I sat and listened in stunned silence, trying to sort out exactly what I was hearing and exactly how it fit in with my faith. Stevie and I said nothing to each other about until the next morning. We were both trying to figure out if we had heard what we thought we had heard and how it correlated to our beliefs. At first, I tried to figure out if somehow I had missed this lesson in church or just missed the boat completely. Then, I was angry that someone would dare tell me that my child was sick because I had not prayed enough – I knew that to be an ultimate lie. Finally, I was saddened that these people believe this way. Not only do they believe it but they make a ministry out of it and portray it as Christian belief.

Sometimes people twist and manipulate things to make them how they want them to be. People have tried this with Christianity since the beginning of time. Sometimes people are so good at it that they make us question our own beliefs.

People can make you feel threatened, weak, or poor…..but they can’t take away your soul. They cannot take away what makes you you. They can’t take away your experiences or choose how you react to those experiences. You ultimately have the power to accept the invitation of salvation. You also have the power to believe that in the end good does triumph over evil, that lightness can outshine the darkness and that although He never promised an easy earthly life we are promised a Heavenly eternal life. (Philipians 3:20-21).

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)