Males and Females....

Every time you smile at someone, it is an action of love, a gift to that person, a beautiful thing. ~Mother Teresa

This was last year.....they're growing up way too fast!

Ok, so I know there are books and research galore about the difference between men and women...but sometimes it doesn't make it any easier to understand MEN.

I asked Stevie a simple question last night, "If I bought a small, old car for under $1,000 and it lasted me 6 months it would be worth it in gas, right?" It wasn't really a question....just a passing thought.....

Why, oh why did I ask that? It turned into a 3 hour ordeal about how I'M finally going to know what it's like to worry about money....you see, he was 'kind' enough to point out that I've been spending loads of money on gas every time Zeta is home from the hospital - going back and forth to appointments, etc. - but, he told me, "You haven't realized it because you've had your mind so wrapped around Zeta's problems, as you should, and you haven't realized anything about money."

This is all very true. I haven't worried about money. I tell people all the time, I gave that all to God a very long time ago - and we haven't had to go without. There's no way I could handle worrying about Zeta AND money.

Sometimes I feel like Stevie has the LUXURY of going to work. I mean, he gets to think about something other than all of Zeta's difficulties and how much our life has changed. He can (or rather, HAS to) shut off the emotional stuff. I realize that going to work probably does help him and gives him the opportunity to 'shut' everything else out, but I also realize that that's the way MEN deal with things....they feel like they have to be DOING something. Our family is blessed to have a man that works to provide for us.

When I think rationally, I realize these things.

But, let's face it - these days - I'm NOT always a rational thinker.

For instance, last night, I had Zeta's fractured leg unwrapped. Stevie called me to the den to watch him move her leg and then she started crying...."Look," he said, "She cries when I move that leg."

"Well, of course she does - that's her broken leg!" I replied in disbelief....I wanted to say a lot more, but decided to hold my tongue..... I mean really, how does he not know which leg is broken?!?!?!?

You see it is just as hard for him to believe that I am just now figuring out that we might need to be concerned about money as it is for me to believe that he doesn't know every detail of Zeta's health issues.

While we are on the subject of money, I have a confession....

Sometimes, I get really worried and overwhelmed about all that people do for us.

I mean, Zeta has her own 'logo' and assortment of 'merchandise' ....people are continually doing for us....continually giving......a friend recently wrote to me, "I feel like a dork sending you money, but I feel so helpless- go buy Zeta a dress and some bows or something." I know that feeling all too well.......and it still feels pretty weird to be on the receiving end of so much support. I don't know what I'm trying to say here.....I just want everyone to know we are so very appreciative....BUT we are not looking for anything.....We try to ensure that we are thoughtful and cognizant of EVERYTHING that people do for us.

The good part of all of this is that now I'm ABLE to worry a little bit about things OTHER than Zeta's health status.

I've been through a HUGE emotional 'letdown' the past few weeks. One of Zeta's home support people gave me a 'baby blues' checklist....and it told me I was 'moderately depressed.' This wasn't a huge surprise. Moms, you can relate to those 'baby blues' you had after you brought your newborn home....now, imaging living in that newborn mode for a year and a half.....I've often read that having a child with special needs is like experiencing a newborn - EVERYDAY - no sleep, exhaustion, the disruption in home and marriage....the change in family dynamics, etc, etc. I have lived - or rather, survived, on adrenaline for the PAST 18 months. Since Zeta's surgery it's as if she has been re-born in a way. I'm finally able to come off that hyper-diligent mode a little more.....BUT it's scaring the heck out of me....

I can allow myself to actually feel my feelings....and I don't always like it.....then there's the 'what-if' scenarios that always pop into my mind too.....

It has been 6 weeks since Zeta's surgery (4 weeks since we've been home). We saw some small seizures immediately after surgery and the day we flew back home. (Now, remember- she was  having small seizures pretty much daily and larger seizures if she was sick prior to the surgery.) Well, for the past 3 days I have seen some questionable seizure activity - all VERY brief. BUT all the what-ifs cloud my brain......I had my mind made up that the seizures were COMPLETELY GONE.........so, DISAPPOINTMENT at seeing this questionable activity is an understatement.......BUT....my 'rational' self tells me that if we went from daily seizures to seizures every 4-6 weeks it is still a TREMENDOUS improvement......I don't want to live in FEAR......or darkness or depression......so I HAVE to get a GRIP!!

Do you ever feel like this???

There is nothing funny about depression, and I know many people have chemical imbalances that medication CAN and DOES help.....but I firmly believe that you also have to take an ACTIVE part in your own thinking. There isn't a magic pill that is going to take ALL of your problems away.....(although sometimes I surely wish there was!!) 

I recently told someone going through the grieving process that I know some days she must feel like she's just going through the motions and giving a 'performance' to those around her.....I feel like that sometimes.....but, you know what? If you go through the motions enough and put a smile on your face - even when you don't feel like it- (AND you ask GOD for strength) eventually, it's not an act anymore.....because .....because you finally find your logical, rational self and realize that THERE are still a LOT of things to be thankful for......

Some days, I feel like I've become my own therapist through writing lol.....and all of you are the greatest counselors in the world - you know, counselors are excellent listeners, and those of you that take time to read about all my problems have to be pretty superb to read so much:)

Zeta has had us scratching our heads the past couple of days. She hasn't really been sick, but she hasn't been herself either. She seems to be trying to do more with her leg...but she seems a little agitated and we can't figure out if her leg is bothering her (I don't really think that's it) or if it's something else. Remember, I said I felt like I've seen some seizure activity here and there - we've been working her a little harder (more sensory stimulation).....so perhaps that has something to do with it..... but, all things considered she is doing well!

 

Thank you for your continued prayers!!!!

Zeta loves her big brother - but Chancelor isn't so sure about the BABY SLOBBER!!!

Life is like a mirror, we get the best results when we smile at it. ~Author Unknown

So take a new grip with your tired hands and strengthen your weak knees.  Mark a straight path for your feet so that those who are weak and lame will not fall but become strong. Hebrews 12:12-13

This verse is appropriate for us in so many ways - both literally and figuratively.... I've been feeling tired (and pitiful, pathetic, depressed - poor, pitiful me-remember?) and Zeta's knees are weak......

Whoa be my soul, Whoa be to Zeta (or some strange saying like that)!

We found a draw-back to Zeta feeling so well......Two steps forward - one step back.....She had some pretty intensive occupational and physical therapy Thursday - probably the most she's ever done.  I noticed that by the second hour she was very irritable (which is not like her - unless something is REALLY wrong).  I also noticed that it seemed to be a little worse when the therapist focused working on her right leg......regretfully, I shrugged it off as her just being a little tight and getting tired of therapy.  We noticed that she was still pretty irritable when we got home.  She seemed to cry every time we touched her.  When she woke yesterday morning I thought about how she seemed to get more upset with movement of her right leg so I tried putting some pressure on that leg and she immediately started crying.... I knew something had to be WRONG. I told her nurse about it and she noticed that Zeta was 'guarding' that leg and not moving it at all.  So, I called and made an appointment with her pediatrician.  I was really hoping she just pulled something - or maybe even was just sore.

We saw her pediatrician, and she sent us for x-rays.  She told us to stay in town after the x-rays so she could call us with the results.  It was obvious that she presumed something was broken. When they were done with the x-rays they told us to just wait at the hospital until they talked with the doctor.  That immediately told me they saw something on the x-ray. A few minutes later her pediatrician called and we were headed to MUSC to see an orthopedist.

We spent ALL afternoon in Charleston.  The initial x-rays were hard to read because it was hard to tell what were actually fractures  and what were actually just her bones.  They said her bones look very weak and brittle.  They decided to do more x-rays and found that she has a fracture and chip on the inside part just below the knee.  Once they figured that out we had to wait for them to decide what to do.....Thankfully - NO SURGERY!!! No cast - she doesn't weight bear or walk so really no need.....the big question was whether or not to splint it? Zeta got a little tired of waiting....

Really, I think she was just HUNGRY!

They finally decided that it would be better  NOT to splint it because she is keeping that leg still on her own, and we know not to be working that leg.  With splinting and her thin skin we would have to worry about skin break down and then risk for infection, etc., etc.  Sooo.....we finally made it home around 1 AM last night. 

I am so very thankful for Zeta's nurse.  She stayed with us the whole time.  I really felt awful that she had to drive almost another hour to get home after we got here (and got Zeta in and settled).  By the time I was finally settled and getting to bed (just before 3) she called to let me know she had made it home safely (now that's dedication!!!:).  We are very blessed to have someone who genuinely cares for Zeta!

Other than the broken leg, therapy went well :) Her SPIO ( a special support suit) came in and she did even better with sitting upright - plus she looked so darned cute - like she was getting ready to go to dance class lol!  I've had visions of more consistent, intensive therapy (in order to catch up with all she has lost over the past 17 months) but I guess we have to put it on hold a little longer - No physical therapy for at least 2 MONTHS!!! UGH!  Oh well, like I  kept telling myself yesterday.....She's not blue....and she can breathe.... and she's not having seizures.....for now we'll just wait on the therapy and dance lessons :)

We continue to shout our praises even when we're hemmed in with troubles, because we know how troubles can develop passionate patience in us, and how that patience in turn forges the tempered steel of virtue, keeping us alert for whatever God will do next.  From Romans 5:3-4

Parents.....

Have I told you I have the best parents - EVER!?

When I was a teenager you could not have told me that I would feel this way.  I thought my parents were too strict, too mean, too 'uncool'.  They just didn't 'get it.' All very cliche' I know, but  - I've 'seen the light!'  I am thankful for my parents choosing not to be my friend.  Instead, they chose to discipline and try to teach me about life. 

Looking back, I don't think I was spoiled - but I definitely didn't want for anything.  I think about all the trips made to practices and games.  All the money that was spent for proms, pageants and other girl stuff.  I realize that my parents taught me unconditional love!....and it's not all about monetary things - it's about being tough when you need to be and giving in sometimes too.  It's about providing and sacrificing.....

Did I tell you that when we were in Phoenix (after Zeta did so well with surgery) I missed my boys so much that I called my Daddy on Sunday afternoon and asked if he would bring them to me.....they were all on a plane the next morning! 

......and I think my mom analyzes everything I say.  I've been talking a lot about how Stevie and I have been doing my hair lol.....how I really needed to get in to really get my hair done....Well, my mom had an appointment scheduled for herself this week.  When she found out that Zeta didn't have any doctor appointments scheduled she told me to take her appointment.  To top it off - she sent Daddy by there to pay for my hair before I even got there!

I could write a book about how much my parents have done for me over the years.  I could write another on all they've done just this past year!  They often express regret about not being able to do more as far as taking care of Zeta, but they really don't understand that if it weren't for them WE wouldn't be able to do what we do for Zeta - and believe me that's more than enough!

The Spinning Head (Again)

We've made it through another week- not uneventfully though!

I've come to the conclusion that I am truly losing my mind.

Last Monday, I sat down with Zeta's nurse and we worked on scheduling, re-scheduling, and confirming all of our appointments for the month. I must have been having an out of body experience at the time because I don't think it did me very much good......(you'll find out why - just read on....)

Zeta had an appointment with her pediatrician on Tuesday because she had been a little under the weather . We left from there for a neurology appointment. Everything went well for both appointments. Her pediatrician started her on a new antibiotic and she was already perking up by Tuesday. I love, love, love her pediatrician! She always has a pep-talk for Zeta and any time Zeta is sick or in the hospital either her office, or she personally, calls to check on her! Her latest advice to Zeta included telling her that she couldn't have any unexpected visits the beginning of September because she is getting married and will be out of the office lol! Everything checked out well with Neurology too - don't have to see them again for 6 months. Her neurologist is a hoot -which is kind of funny because the neurologist in Phoenix was a real character too - so much so that Steve asked me if I thought it was a requirement for neuros to be so 'charasmatic' - I don't think he used those words lol, but I digress.... I'm thankful to have such caring, charasmatic, and animated doctors - it sure makes the appointments more interesting!

The fun came (along with the realization that I'm crazy) on Wednesday when the boys and I left to go to a dental appointment. We left early to do a little school shopping because I knew this was the last day I had available to get some last minute shopping done before school started. As Steven was trying on the 2 millionth pair of blue jeans (let me tell you, a size 29x 25 fit is pretty hard to find:) Zeta's nurse called to tell me that the calendar showed that our dental appointments were for the following week. I called the dentist office and asked, "Are our appointments today or next Wednesday?" After searching their appointment calendar, the receptionist finally confirmed that our appointments were neither that day, nor the following week. The appointments aren't until August 31st!!!! So, does that tell you how crazy I am???

Thursday, we headed back to Charleston for a cardio appointment (one doctor we can scratch off the list now woo hoo!) and I initially though we had rescheduled therapy for then too, but Zeta's nurse quickly set me straight! So we drove all the way to Charleston to wait a couple of hours to be told that everything is a-ok with her heart....which is just fine with me! Oh, and I forgot to mention that I pulled Zeta's feeding tube out again (only the second time this week) so I ended up having to replace it while we were in the parking garage -and yes, I've learned to order spares to keep on hand - no more embarrassing phone calls to the morgue (if you've just started reading my blog you'll have to go back and read about the time that I was calling all the area hospitals looking for a button for the feeding tube).

We got home around 3:30 Thursday and then turned right back around to go to the beach that evening. Much needed Beach Therapy or just CRAZY? Sometimes, I make my ownself wonder!!! Really, the whole reason we decided to go to the beach this weekend is because Steven recently made the comment, "We don't ever go to the beach anymore." I told him that he goes all the time with Nan and Grandaddy -and he quickly responded, "Yeah, but you and daddy don't go with us like you did before Zeta was born." That kind of tugged at my heart, so of course we had to make it happen before school started! Sad thing is I wasted the whole weekend worrying about missing meet and greet and feeling sorry for myself for a variety of other reasons......sometimes it's just really hard to shake the self-pity when you think about your circumstances and start feeling sorry for yourself.

I did get to have an interesting conversation with Chancelor. We were discussing possible colleges. (Ok , so he's only 8 - but it's never too early) I told him that he could choose Harvard, Yale, or Princeton. He said he would probably go to Yale so he could catch a lot of fish?....Then Steve told him that he couldn't go to college because he has 'un-learned' how to sleep in his OWN bed this summer (he will sleep in the den, the living room, on the floor, on the couch, in our bed - but NOT HIS bed). Chancelor's reply, "Get real Daddy. When I go to college I will be much older, much braver, and plus I will have a roommate!"

Today, I took the boys to school.....The very first time I've taken them on the first day and left them there (except for pre-school). I always worked in the school that they attended.....up until last year, and on the first day of school last year I was at the hospital with Zeta. So, today I took them to school. Chancelor let me walk him in- even held my hand until we got to the 3rd grade hall, but then he dropped it quick! Steven informed me last night that he did not need me to walk him in....he explained that he knew how to get to fifth grade hall and he could read the teacher's names and find his classroom. So, I wasn't really feeling the love this morning. Now I know how all those parents felt when they left their children with me all those years that I taught kindergarten or the times I tried to coax children from their parents when I was a counselor (makes me wonder now - was I coaxing the child from the parent or vice-versa lol).

Have you ever felt you only had one step left between you and the make-believe line that keeps you from going insane? Well, this morning I crossed that line...... I was already contemplating a morning nap (like that's really gonna happen) 'cause I was still wallowing in the mire of self-pity, but then Zeta's pediatrican's office called. They called to tell me about the latest virulent bacteria growing in Zeta's trach (results from the culture they took last week when she wasn't feeling well). ARRRGGGHHHHH!!!!! Talk about crossing the line to insanity - I think I jumped the cliff!!!!!!! You could say I panicked!!! "Oh no, this can't be good!!! Should I clorox and wash down everything in my house?" I was assured that everything was okay, that we just need to continue good hand-washing (it's a wonder we have any skin left on our hands around here). Thankfully, the bacteria is susceptible to the antibiotic they put her on last week.

Well, I hung up the phone and fell into a heap of sobs. I just couldn't help myself. I've already been stuck in the valley of despair in a city call pity and now, I had just jumped the cliff waaayyy far from reality! Why? Why? Why? Waaa...Waaa....Waa.....

Funny how it took me a while to realize that Zeta is okay. That evidently, we caught this infection very early. That she was doing better by day 2 of the antibiotics. No, I got lost in the fact that I just found out WHAT it was. I was wasting time thinking about all the what ifs and what might happen.....I totally forgot about how well she has been doing! I didn't think about the fact that 'clinically' there are no signs of the infection.......Just wasting time........

Just like this weekend - that's what I did - WASTED time. WASTED time that I could have spent enjoying my family, but instead I sullked. WASTED time, but instead I felt sorry for myself. WASTED time - because instead of focusing on all that our family CAN do together, I chose to focus on what we CAN'T do - and.....and I felt SORRY for myself....not sorry for Zeta, not sorry for my family....but sorry for MYSELF!

You know, once we get down sometimes it's hard to get back up. You know, the feeling like the screaming girl in the movies that ends up getting knocked because all she does is cry and scream and scream and cry and somehow a slap in the face makes her stop? You know, that spinning head feeling??? (I do have those pretty often-lol). You know the feeling....yeah we all know that feeling......when you realize how silly it is to feel so sorry for yourself and then you get really embarrassed because if anyone knew you felt this way it would be a total shame. You know - because they say-most people don't care to hear your problems and the rest of them are just glad they don't have your problems!

I'm fortunate because Someone is always looking out for my well-being and makes sure I find my way back up. Once I got over my 'spell' this morning I decided that I should go ahead and clean the room that Zeta spends most of her time in.....Err...well, I did a little more than clean.....I washed and scrubbed, and germ-xed, lysoled, and cloroxed anything in my way. During the moments that I wanted to stop and feel sorry for myself the phone would ring....no lie....I had more phone calls today than I usually have in 3 or 4 days. I sat and talked with a friend for a while and she even brought up a note (without knowing my pity party status) that had been tagged on my facebook page. The note is entitled, Sunshine in the midst of the storm (by Kaelyn Michelle Pfenning). Several things stuck out to me..... 1. My questioning of 'Why' because of a recent death 2. The trap of my own self-pity I have allowed myself to experience the past few days-------
These are some of the things that I read:When the stress of school or work becomes too much to bear or the pressures of peers becomes too much to withstand or the pain of separation becomes too much to endure or the uncertainty of life becomes too much to comprehend, "Let us fix our eyes on Jesus, the author and perfecter of our faith, who for the joy set before him endured the cross, scorning its shame, and sat down at the right hand of the throne of God."
He alone knows and understands completely everything we experience.
"The Lord your God is with you, he is mighty to save. He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing." ~ Zephaniah3:17
There is a reason "why" and just because we often lose sight of why doesn't mean that He loves us less. God has a plan for each and every one of us. He has never promised that our earthly lives will be easygiven us minds to make our own choices. We, ultimately, have to utilize those choices and exercise our FAITH.....I know I can make that choice or I can choose to wallow in self-pity..........I can tell you FOR SURE that it feels a lot BETTER knowing that I'm in His loving arms!

I have a thing.....

Actually I have quite a few things...

Let's call this Listen to Angel Complain Day

Have you ever had an trouble scheduling something with a doctor? I have a thing with schedulers.....granted it's not their fault, but boy could I really take out some aggression in this area sometimes. Ever had a doctor tell you, "Call the office anytime...really, if there is anything we can do"....or....."just call next week and we'll set up an appointment to get this done".....or the all famous......."call me if this happens again and we'll get you RIGHT in." The worst is when you're discharged from the hospital with instructions on calling and making an appointment within a certain time-frame, but someone neglects to tell the gatekeeper (AKA the appointment scheduler). The problem with all of this is that most doctors don't know their own schedules and they don't know that you have to FIGHT the lady holding the lock to the appointment schedule for you to get in!! ARGGHHH>>>>>

I called today to try to schedule a repeat MRI (to check the brain lesion)....the confusion came in because I wanted to schedule the MRI along with an upcoming surgery....you would have thought that I had asked to speak with the President of the United States. I was initially basically told that it would be impossible. After I explained (200 more times) that Zeta is put to sleep a lot and we try to do as many things as possible under one anesthesia setting (and explained that yes, she has had an MRI and/or CT in conjunction with other procedures before) the 'gatekeeper' finally saw the light and agreed to 'see what she could do'. A couple of hours later she called me back with good news (and the whole story about how difficult it was to get everything scheduled). Now, I do see some humor in this. I see the point when they want you to make separate appointments to do different things and to them (not knowing the whole story) it isn't a big deal. But, to me - the crazed parent - it is a HUGE deal....I mean sitting here thinking about it- it is very possible that Zeta could have potentially been put to sleep close to nearly 30 times or more for various tests, procedures, surgeries, etc. but since we always try to bundle everything together we have only had to put her to sleep maybe a dozen times. That is a HUGE deal! I also understand that it does take a LOT of work to coordinate such things, but that offers little comfort to me when I weigh the leg-work versus the potential complications each time I have to put my baby to sleep. So that's my soap-box with the schedulers today. My apologies if you are in that line of work - like I said, I know it's not the schedulers fault....nobody's "fault" really...just not something that's not usually done I guess....it still irritates me though!

Now, I have another thing....... with TECHNOLOGY....

Sometimes, it really gets on my nerves....

I mean really...do I have to be available via land-line...mobile phone....and email all at the same time? Really, I was trying to do it all at the same time today- scheduling and rescheduling appointments, trying to answer some important emails regarding appointments and supplies, and trying to have a text conversation with a friend (that I wanted to talk to) - all at the same time - and all the while my grandmother was visiting too....I thought, 'this is CRAZY!" REALLY, do YOU ever feel overwhelmed about all the connectivity that you have?

Then on the other hand....

My lap-top died recently.......I thought I would really go into mourning.......

Then I got it fixed and my alltel card was mutilated.......I thought I was going to have DTs (or whatever it's called when you are in really bad withdrawls).....So, technology gets on my nerves when it's constantly beeping, ringing, or vibrating....but it might be even worse when the silence reigns.....ughh......



I have a thing.....about our post office closing in November.....the mailman stopped by with some packages today - he's such a nice guy. When the post office here closes will I have to go get my mail from some other place? I understand the whole thing about mail being outdated because of the TECHNOLOGY and all that stuff, but really? I mean, I'm sure the UPS man and Fed-ex are already suspicious that I'm running some sort of illegal activity out here - what, with all the medical supplies and groceries (ie bleach, trash bags, and laundry detergent) that I have delivered because I don't get out to the store on a regular basis. If I have to drive to get my mail from a 'bigger' post office they probably won't have a box big enough to keep it all in until I get a chance to go pick it up!



I have a thing......A thing that is so good and so wonderful....and yet confusing at the same time......I wonder why people are so good to my family and me. Today, the "Avon Lady" visited with proceeds from a fundraiser and a goody bag for Zeta (and one for me too)! A friend brought me something from town just so I wouldn't have to put on make-up and risk being seen in public. I have so much to be thankful for - yet I still don't understand it all.

Why is it that our family is so blessed while others are suffering?

Why can't we all be 'shiny, happy, people?'

Why is that while everything is ok

WHY?

I don't know why ......I do know that death and suffering are a part of life and while it is difficult for the living -it is the ultimate reward for the saved ones to meet their Maker. I know there is a plan. I know that difficult situations shape us, push us to our limits, and often break us.....BUT difficult situations also give us the OPPORTUNITY to build stronger relationships and make choices that bring us closer to GOD.

"Pain insists upon being attended to. God whispers to us in our pleasures, speaks in our consciences, but shouts in our pains. " -C.S. Lewis

Matthew 5:4 "God blesses those who mourn, for they will be comforted."


Zeta continues to do well....lots of appointments this week! Thank you for your continued prayers as we work toward helping her grow stronger every day!

"For I know the plans I have for you," says the Lord. "Plans to prosper you and not to harm you. Plans to give you a hope and a future."

Jeremiah 29:11

Why?

WHY
by 4HIM

They say that into every life
Some rain must fall
For the pain is no respector
Of the mighty or the small
But sometimes
It just seems so Unfair
To see the One who’s had
More than His share
Oh it makes you wonder why
And Lord
I wouldn’t second guess
Your mighty plan
For I know You have a purpose
That’s beyond the scope of man
If You look inside my heart
You will find
That I have always been
The Trusting kind
Oh but still I wonder...
Why
Do the rainy days have to come
When the storm clouds hide the sun
I wanna know why
Why
When the reasons aren’t clear to me
When it all is a mystery
I want to know why
And though down here
I may not understand
I won’t let go
Of the Unseen hand
For It holds the reasons why

The Lord has never been afraid
Of honest prayers
And He won’t allow the burden
To be more than you can bear
When He knows that your trust
Is in Him
He doesn’t mind the questions
Now and then
Even if you wonder


If our relationship is 'right' with God is it really ok to question WHY? I've had my share of questioning and tonight I weep for a kind-hearted man and his beautiful and faithful wife and daughter and ask - Why?

Please pray for this family!

Zeta Update - and Yeah, I'm from a small town!

I really cannot articulate the changes we have seen in Zeta since surgery. A lot of it would seem pretty subtle to someone not really familiar with Zeta, but to us they are huge changes. I think the biggest difference is that she seems to have more energy and we see a many more 'emerging' physical and cognitive skills.

When we were in Phoenix, someone asked me, "Are you prepared to handle all this? Are you prepared to take her home?" I'm not sure exactly what she meant when she asked me this....I know she didn't know the full details of Zeta's history...perhaps she thought the brain surgery was the first 'hiccup' we've had in her short life...I really don't know...what I do know is that when she asked, "Are you prepared for this?" I thought, "Am I prepared?" "YES, DEFINITELY, YES!" My baby acted better in the immediate days after surgery than I've ever seen her - EVER!!!! So, yes I'm prepared..... Will things continue to improve? I sure hope so..... Can I say for certain that everything will eventually be fixed? That's not up to me....But am I prepared? Yes....why?.....I have God to carry me through...even on days when I'm not sure if I'm even ready for my feet to hit the floor to start the day.

However, one thing that has changed drastically since surgery is her sleeping pattern. She has her days and nights mixed up! I just used to THINK I wasn't getting much sleep, but like I told Stevie yesterday - I would be happy to get more than 2-3 hours of sleep in a row right about now! I probably haven't really helped matters at all though......I mean sometimes when Zeta is up at night I'm just so thrilled with how happy she is that I HAVE to talk to her and play with her, so I KNOW that CONFUSES her even more! The past couple of nights have been a little better. She has slept about 6 hours in a row - granted she is not on the same schedule as ME though. She slept from 8pm till 2 am, while I was just getting to sleep around 1. Oh well, that's life and I'm happy for it! (Just don't ask me how I feel about it around 4 in the morning:) She has a couple of minor issues we are dealing with right now, but I'm thinking they may be tied to the change in her sleeping patterns.... Waiting for a call back from a doctor as I write now....

I also thought when we returned from Phoenix that our 'doctor visit' schedule on the calendar was finally letting up a bit, but we have quickly filled our weeks back up with appointments.......we've also rescheduled the surgery for her cleft repair (for the 3rd or 4th time)...I know I live off the adrenaline rush sometimes....if it were any different right now I don't know what I would do with myself. When we do get more than a few days at home I feel like I don't know what to do.

Now, sit back and let me tell you my 'little small town story'....and how I've kept my sanity thus far....

I live in Ulmer. For those of you who don't know Ulmer, I would caution you not to blink once you hit the 35mph sign.

When I was younger I dreamt of big city life and getting out of the country. I was moving away to college.....You know the deal - Live in a BIG city, get a BIG degree, make a BIG difference. FORTUNATELY, that never happened. The biggest city I moved to was Aiken, SC - and even that was too much city for me LOL! Now, I actually live in the house that I lived in until I was 8 years old.

I am very blessed to be surrounded by family. I am also blessed to be surrounded by long-time neighbors and friends. As I've grown older, I've come to realize how much it means to have friends and family close by, but since Zeta has been born those realizations have become even more concrete.

A couple of days after returning from Phoenix, we had to follow up with Zeta's pediatrican. Imagine, going down the road and seeing tangible reminders that friends and family have been praying for your family....this is exactly what I saw. Green and pink bows, representing Team Zeta, everywhere!

There is a lot to be said to be from a small town (actually a community of small towns - Allendale, Barnwell, Bamberg, Hampton). Like they say, 'everybody's famous in a small town'. I know that saying has a negative connotation most of the time....but in times of great need it is the ultimate comfort. Zeta has been blessed to be 'famous' in a small town. Blessed because so many people continuously pray. Blessed because we've had the opportunity to meet people we never would have known had we not been in these specific circumstances. Blessed because we are a part of God's greater plan.

I will not lie and say that everything is, or has been, all 'hunky dory'....or that any day is particularly easy.....BUT, as with anything else in life - we adapt. As humans we have the amazing gift of adaptibility.......and the way that we adapt depends largely in part to how much support we have. If we have support, we find hope, if we have hope things tend to be a bit easier.

If we lived in a big city we would be lost in a sea of people.....I am thankful for our small town, for our community and I am infinitely grateful for all that has been done for us!

With all of the support and prayers that we've experienced we are able to find hope when we are lacking. We are continually reminded of God's love for us, and we are eternally grateful for each and every one of you!

Heavy Heart

I wrote this entry last night, but wasn't able to post.

My heart is heavy.

On the way to Zeta's appointments at MUSC today we witnessed the end results of an erratic driver. The first thing I thought about the pedestrian was, "Oh, I hope he believed in God. I hope he was saved." My thoughts toward the driver were conflicting and confusing. My immediate thought was of sorrow, then wondering whether or not his life was 'right' with God, and finally anger at how his actions changed so many lives in an instant. I have continued with these emotions throughout the day. No, it is not my place to judge. No, I don't know why the driver was driving the way that he was, and I will probably not ever know whether either of these men were/are 'right' with God. On one hand I can say that it is not my problem, and on the other I have to say that it is my obligation......to help others understand....to help others know Him....to show what a difference He has made in our lives....all at the same time I am constantly re-examining my own faith and trying to figure out Life.

My heart is heavy because I know a family that is struggling with the effects of cancer. I am struggling between WISHING they were not dealing with this and UNDERSTANDING that there is some GREATER PLAN in it all. I teeter between feeling as though I have some understanding of what they are going through while knowing that I can never fully understand someone else's story or someone else's pain without experiencing it firsthand.

My heart is heavy because I know a mother who is preparing for her baby to go through surgery soon. She is rightfully anxious. I can give advice and tell her how OUR experiences have been relating to surgery. Yet, I cannot fully understand how SHE is handling things or know exactly what to say. I want to say everything will be okay. I want to tell her to give to Him....but I know that is much, much easier SAID than DONE.

My heart is heavy because I have an old friend that does not believe in God. In fact, I'm pretty sure friend proclaims to hate God. Years ago, one of the last things friend said to me was, "You taught me a lot about God." I think to myself - apparently I didn't do enough, but I still pray about it, and I know it is friend's choice and I cannot MAKE this decision.

I have wanted to wrap my arms and heart around all of these people today. My heart aches for each of them, but I know He is watching over everyone involved in every aspect of each one's story.

I think about my own story. I think about how my heart aches for my own family and myself at times. I know that my OWN story has made me much more compassionate and open to other people's stories. I know that it has made me (at least want to ) listen more and (try) to judge a lot less.

Listen more.....judge less............

A LOT EASIER SAID THAN DONE.

It's human nature.

BUT.....I HAVE BEEN BLESSED TO HAVE CONSTANT REMINDERS.

I've judged, I've been hypocritical. I've lied. I've been mean before. I've walked right past someone obviously hurting because I was too busy or too oblivious to what was going on..,..or because I had no idea what to say. I say these things in past tense because they are things I WISH I didn't do, but I know the human-ness (if that's a word) is still very much a part of me and I KNOW I am not always what I need to be. I try to be conscious of these things, but who are we kidding here....I'm NOT PERFECT................ I'm NOT amazing....I'm NOT strong.......I'm NOT a lot of things that people are kind enough to say or think that I am. If I SEEM to be ANYTHING at all it is when I am stepping back and letting GOD take control....it is because I have a SOLID family that CONSTANTLY loves and supports me...it is because I have a few AWESOME friends that make me feel like what is going on in MY life is most important and have been MORE GIVING and UNDERSTANDING than I wonder if I would ever be... it is because I have friends AND complete STRANGERS reaching out to me and showing me KINDNESS and LOVE in ways I never imagined.

I follow a blog by Chris Johnson....he once said something about being BROKEN by the Holy Spirit....Just a couple of years ago, I could not have possibly understood what he meant, but now I am fully aware.

Yes, I've been a Christian for a long time.....but for a long time I don't think I've fully understood all I needed to know and all I have still yet to learn!

I know this hasn't been the jolliest of entries...but things like this continually weigh on my mind. I initially sat down to write a "Zeta update" but I just couldn't get these things out of my mind.

I just recently told a friend that I feel like sometimes I walk a fine line between some of those 'unbelieveable' wannabe televangelists and truly being a witness of my faith....Like sometimes I might fall between cheesy and -Heaven forbid- too "Holy Roly" lolok. The point I'm trying to make is that I don't want to TELL people what to do, HOW to act, WHAT to feel. I just hope that I can SHARE and be an example in the best way that I know how.....and regretfully, sometimes (actually probably many times) that means I'm imperfect in an imperfect world.

I really wandered all over the place here with this blog tonight...the fun thing about blogging is that I never really make myself crazy over what I'm going to write(although I have experienced some writer's remorse immediately after pressing SEND at times)...I start writing....and hope that it makes sense....and hope that maybe someone may find some use in what I say...or at least be a little interested.... I think most of all it gives me a way to express my thoughts....those who know me know that I'm not always all about TALKING about my feelings...but WRITING...well that's another story!

>....and Mandy....a Zeta update blog 'coming soon', promise:) (but she is still doing well!)