I've been wanting to post this video a while now, but have not been successful. Isn't ironic that I'm able to post it the very day after Zeta has the WORST seizing episode since her surgery? I'll just take it as a reminder to myself about how far we've come!

Click on the link to see the video:
Zeta Year Two

I'm very grateful to say that although yesterday was pretty scary, Zeta has done very well since then and we plan to be leaving the hospital soon!!

Love life!

“If you woke up this morning with more health than illness, you are more blessed than the million who will not survive the week. If you have food in your refrigerator, clothes on your back, a roof over your head and a place to sleep, you are richer than 75 percent of the world .If you have money in the bank or in your wallet, you are among the top 80 percent of the world's wealthy. If you hold up your head with a smile on your face and are truly thankful, you are blessed because the majority can, but some do not."

It seems like forever since my last post.  We've just been busy......caught up in life......wonderful, incredible life!!

 Let's see....

We've continued to work on weaning Zeta from the vent.  All in all it has been going very well.  She still requires oxygen 24/7, but we are finally making a lot of progress with weaning her from the ventilator.

Last weekend we had the privilege of working with Rebecca and Andrea from Rebecca Willis Photography.  Our friend, Trina, nominated our family for a "Pay it Forward" contest with them. 

Rebecca does fabulous work, don't you think?

I can't wait to see the rest of the pictures!

Zeta has been doing so well that we decided to take a mini-family-vacation to the mountains this weekend.  We spent most of our time in the cabin just enjoying our time together.  No phones, no computers, no distractions - just lots of quality family time!  We were able to venture out a few hours Saturday and take a tour of the Biltmore.

From the looks of the picture you can tell we had fun- although from the snoozing she is doing here it appears that  Zeta may have found it a little boring!

I don't think there is anything in the world I would trade for the memories we made this weekend! It makes all the difference in the world when you feel you've done something right and you know the absolute, unconditional love of- and for -your family!

Life happens.  Every day. Every day, we're in a rush to  get this--- go there---- do that.  Our 'to do' lists seem never ending and sometimes we just wish for rest.  I know, that at least for me, it's easy to lose sight of what's really important and all of the little things that we should be thankful for.

You can't tell me God isn't real.  You can't tell me that everything that has happened in my life hasn't happened for a reason. You can't go through what our family has been through and not KNOW that God has a greater purpose for each of us. I'm so thankful for the times I'm allowed to look at my life through a different lens.....when I am able to know..... and see .....and understand the little things.....when I fully realize how ultimately blessed I am!  

I still struggle to come to terms with the fact that I still let 'life' get in the way of realizing my blessings.....how awful it is that something bad or unexpected  has to happen to make me really focus on all that is good...... It shouldn't necessarily be that way....but unfortunately I think it is the human way for many of us.............

Zeta started running fever Saturday night....with the fever came some (thankfully, only slight) seizure activity (not surprisingly).

 Paranoid....worried....distraught........

.....those aren't big enough words for how I was feeling when I first noticed it.........

I mean, here we are.....in this cozy, lovely cabin.....

in the woods.....

on the side of a mountain.......

with my medically fragile -

 AND NOW SICK- child. 

 Panic would probably be the better word! Mind you, we had been planning the trip and waiting and watching Zeta for a month prior.  I didn't even book the cabin until the night before we planned to leave.  Zeta's nurse and I took careful thought in packing and planning everything - including her emergency medications.  I had already researched nearby hospitals, emergency stations and even contacted local dispatch to let them know we would be in the area.....but when I noticed the twitching in Zeta's eyes and then saw the temperature register on the thermometer I PANICKED!!!  Fortunately, it was just a slight moment of panic.  Fortunately, Stevie reminded me of all our planning, of how we deal with fevers and small seizures at home a lot.....and..... that we would be ok.  

Well, he was right.  We were ok. 

We were prepared, and everything turned out fine.  Zeta actually did pretty well on the ride home yesterday so I had chalked everything up to pure stress on her system.  However, she woke with fever, congestion, and coughing this morning so now I'm wondering if maybe she isn't trying to get sick after all.....It would be nice to think that maybe I didn't voluntarily stress her system out on Saturday.....but it'd also be nice to think that she isn't getting sick............so say a little prayer for us!

“Cherish your yesterdays, dream your tomorrows and live your todays."



The future is almost here...

For the past several days I’ve been talking back and forth with  insurance, doctors, and a lab at Baylor College in Texas.

Why? 

Well, it seems as though the future is at Baylor College and we want to be a part of it. 

Let me explain.

Since even before birth it has been suspected that Zeta has some type of midline (or central nervous system) ‘syndrome’.  Thing is, we haven’t quite been able to figure out exactly what it is.  She was initially clinically diagnosed with CHARGE syndrome (which seems to match her pretty closely), but then they kept finding more things ‘wrong’ and she did not have the CHARGE gene mutation (although many children classified with CHARGE syndrome do not have the mutation)…..So the CHARGE diagnosis was retracted and she became officially undiagnosed with  multiple congenital anomalies   -  or a CHARGE-like syndrome with hypothalamic hamartoma -  for all intensive purposes.  Did you get all that? The brain tumor kind of threw a wrench in things because it is so rare……at one time we became pretty sure that she may have a different syndrome called Pallister-Hall, but she tested negative for that too.  In the mean time she has been tested for many other syndromes  and disorders – each one seemed to sound more terrifying…..with all sorts of scary information and expiration dates (really, that’s what they call the age that your child may be expected to live).  Lately, we had got to the point that we felt as though we were hitting a brick wall with all of the genetic testing.  Our Geneticist shared our feelings and suggested that we wait for a new test that would be available to the public in the next few years……whole exome sequencing.  This test, he explained, would be able to look at all of the genes and look for all of the mutations that could be causing issues for Zeta.  The hard part would be making use of this information.  All of us, most likely, have some types of variability in our genes so knowing which mutations are of importance is key. 

…..Enter Baylor College of Medicine Genetics Laboratory……

BCM now offers Whole Exome Sequencing – the test our Geneticist told us about……..a test that hopefully (and prayerfully) may give us more direction and answers…..so this is my new initiative.    

Thankfully, we don’t have to actually GO to Baylor.  The blood will be drawn at MUSC and then sent out to Baylor. 

The tricky part is in hoping that insurance covers the service.  The next part lies in exactly how much faith and hope I put into yet another test (which, obviously, is NOT where my hope and faith should be held). 

Whole Exome Sequencing is relatively new to the general public, yet its benefits have exceeded many expectations.  Some families have been able to find out exactly what the problem is AND therefore how to ‘fix’ certain things.  I’d venture to say, though, that not all families have been as lucky.   Wouldn’t it be wonderful to KNOW what causes certain problems and then HOW to alleviate those problems?........but…..would it be ok to hear that there is not a way to fix the problem………would it be ok to hear someone give an expiration date on my child……….would it be ok to give her yet another label………….would it be ok if we don’t find out anything new at all??? What if it changes everything……..what if it changes nothing…….

So, yes the future is here….and almost at our reach……and while I’m excited….I’m also not so sure that I want to know……..

 Isn’t that how we feel in our spiritual life sometimes too?  I know that there are times I am very confident in what my future holds………… and then there are times that I feel like I may not be doing everything that I should………….. and then I start to worry about the future.   When it comes to exactly what the future holds after death I know that I’ve accepted an invitation and that God has made a promise…..but still….for me…… a lot of it rests on complete faith……The great thing is…..that faith is what makes me ok – and confident - about what my future will one day hold….

…….and just think…….even if you’re not so sure……..what if it changes everything?

Just slow down and live

Today, as Chancelor and I looked out the den window, I was amazed by all of the birds in our yard.  I began to wonder if we’ve always had so many birds and maybe I had just failed to notice.  It got me to thinking about so many other things that I don’t slow down to notice.  The other day it was drizzling outside.  I opened all the windows and just inhaled the fresh, damp air. I just stood there as Zeta napped. I listened to the sounds, felt the breeze, and took in the smells.  I enjoyed my brief quiet time and thanked God for all of my blessings.  I thought about all of the wonderful things in my life.  I thought about my home, my family and friends, my life.  I thought, “Wow, I’ve truly been blessed.”  There are so many broken lives, broken families, broken souls……yet somehow I’m lucky.  Don’t get me wrong – I’ve been broken………..but my ‘broken’ and the experiences I’ve had have made me who I am and have brought me to this point. In my broken-ness, God has worked.  In my broken-ness, He has healed.  In my broken-ness, I’ve learned to look for the true blessings in life. 

Life is busy.  I think we can all relate to feeling like there just aren’t enough hours in the day.  In our house we have school, work, ball, therapy, doctors’ visits and the list goes on and on – I bet you have quite a list yourself…...  Life is hard.  I’m constantly second guessing some decisions and praying that we’re making the best ones for our family. ……….but most of all…………Life is beautiful!  To think about the bonds that we share and all of the simple things…….that makes every bit of grief and pain and worry absolutely worth it.  To share a smile, a laugh, a hug……to know that in some way you can make a difference – sometimes (actually a lot of times) just the way that you treat someone can make or break their day (and your own)…….To know that there are times- that yes there ARE times that life can actually be that simple …….to forget everything else and take a child’s hand, wipe a tear, take in the sights and the smells, give a smile or just think about the things that are true and good in your life……that those are the simple things that matter.  What disturbs me is that it has taken me this long to fully embrace this feeling.

Guess what today is?  Today is Zeta’s birthday!  Quite an accomplishment for our little one!  Last year she was in the hospital.  Today we were at the doctor’s office.  She got to spend the morning with one of her most favorite doctorsJ - We had a little party for her yesterday.  A friend of mine tells me that one day we are going to have a huge party fit for a princess – I just don’t think she’s ready for all that- yet…..whether or not she ever gets that kind of party here on earth I don’t know, but I do know that one day I want my whole family to be in Heaven for the greatest party of all…..and just like her party yesterday – we’ll be surrounded by people that love us…..we’ll look back over all we’ve accomplished, all we’ve endured, and even all in which we’ve failed…..but we’ll look back at it without regret because we will be home and safe and we’ll see and know and understand the simple things and the plans that He had for our lives.  My prayer for now is that God protects my family and loved ones and that He continues to tug at each of us to keep open hearts and search for the peace and understanding that comes from true and unconditional love.

PS - I have a video collage of Zeta's 2nd year I've been trying to post, but I'm having some technical difficulty :(  Hopefully, I'll have it up soon!

Never will I leave you; never will I forsake you. Hebrews 13:5

I have to say that I find it both comforting and disconcerting that it often takes something negative going on for me to really step back and realize all that I have to be thankful for….

Yes, even after all that we’ve been through I still get caught up in the whole “why me” cycle…..if you read my last blog you obviously noticed that………

Well, true to His Word, once I got my little temper tantrum out, I’ve been given many reminders about how precious life is and about how I really should get down on my knees and thank God that I’ve got this crazy life!

It wasn’t long after my last post that Zeta became sick.  She has been back on the ventilator full-time for nearly a week now (Up until then she has been off it during the day for some time and we had actually begun trying to wean her from it some at night too).  The first few days back on were pretty rough and we were beginning to anticipate a hospital stay…….I also figured out pretty quickly that I was very thankful that she hasn’t been on the vent full-time because it adds a considerable amount of stuff we have to lug around and also adds a lot of time to our preparation of getting in and out the house to go to appointments – so I suppose this was my first re-understanding of how far we’ve come and how much I need to remember to be thankful for all that we do have. Thankfully, she seems to be feeling a lot better but is just having some trouble getting back off the ventilator.

I’ve also realized that although I can’t do all the things that I want to do with my boys they are surrounded by people who love and care for them.  We’ve been very fortunate that throughout all the ups and downs both of them seem well-adjusted and we’ve never had to leave them in less than capable hands.

I understand, too, that we are very fortunate to have respite….and not just any person coming in to give us a break, but someone we’ve come to consider almost part of our family.  I completely trust her with Zeta’s care – even when she is sick.  Zeta’s nurse spent the day with her Friday while Steve and I were able to enjoy a fun day out with the boys……and yesterday we had a ‘date’ just the two of us!

It’s like…….miraculously………somehow………since we first found out Zeta would be a girl……..I grew up and finally started figuring out a little about life…….up until that point I thought I understood a little, but I really didn’t have a clue…………really, I know that I still don’t - but at least I realize it and I’m ok with that……

Where your treasure is, there your heart will be also. ~Matthew 6:21

One day we'll all be perfect.....

Try as I might – I’m failing, miserably.

At what?

Maybe everything………..

Ever have trouble shaking this feeling?  Me too……and it’s been driving me insane lately.

Areas that hurt the most in which to fail?

Steven……….Chancelor……...…Zeta………..Life……………

No, this isn’t as dire as it sounds….my emotions have just been very raw the past few days, and I’ve fought that dark place in my soul almost constantly,or at least it seems.

Ever wish you could do better? Feel better? BE better?

I think we all feel like that sometimes. It’s just,  I absolutely hate this feeling.  It’s like you’re battling this demonic abstract thing that just wants to take control of your feelings.  Like anything can tip you over the edge…at any given moment…..when you least expect it…..

It tends to be a little embarrassing to cry at a moment when you yourself don’t even fully understand why.

Do you understand the feeling that I’m talking about?

It’s kind of like this – people would understand if I broke down – you know that ‘look at all you’ve got on your plate’ mentality. 

I admit, sometimes, it’s very easy to feel sorry for myself.

BUT – this is not who I am……….this is not who I want to be………I don’t think any of us do.

I say it over and over – WE ALL HAVE PROBLEMS –the circumstances in my issues may seem larger or smaller in comparison to yours, but they are MINE, so to me – at any given time they may seem like the greatest challenges anyone has ever encountered.  When I look at it with that mentality I get overwhelmed………

Some people have become apt to share their stories with me…..and when I listen to those stories I can relate – to fear, to anger,  to grief, to distrust …………..to facing the unknown…………………to hope………..to trust………….to acceptance………to FAITH…..(even if of a mustard seed).

I woke up this morning and read my own words quoted on a friend’s facebook page ..."there is no such thing as the perfect person and no such thing as one who stands alone...it's just hard being the needy one."   Sometimes, I wish I were wise enough to take my own advice.  There are times we all have the desire to stand alone, and to be perfect. In reality we are all flawed. There  is only One who can stand alone, only One who is perfect.

 Not sure if you can read this picture of today's devotional in Our Daily Bread, but it's titled FLAWED.  The last paragraph reads:

Just like the people who lived thousands of years ago, each of us comes with flaws. But by God's grace we can overcome those imperfections by embracing His "strength [which] is made perfect in weakness" (2 Cor. 12:9)
It's good to learn of our weakness if it drives us to lean on God's strength. 

 

So, you see, I must learn to accept that I’m not going to do everything I want to do….I am never going to be perfect (although I would settle for just adequate right about now)………all I can do is try my best and hope that my family all remains unscathed at  the end of the day.  A little faith goes a long way!

…..and the unseen scars that we’ve earned are nowhere near those of the nail-scarred hand…..

Marked Hands
by Janet Martin © 2009

When I was just a little girl at my mother's knee,
I asked her as I touched her hands just how it came to be,
There were so many lines on them; they were so marked and rough,
Not knowing the price a mother pays to make sure we had enough

Marked hands of a mother; marked by a labor of love,
Daily chores in daily life, strengthened by a Hand above,
Marked hands of a mother; a price so gladly paid,
The most beautiful hands on earth that God has ever made

My little daughter asked me not so very long ago
Why my hands were marked and rough and just what made them so,
A world of emotion moved me behind my simple reply,
'A mother's hands get marked with time as busy days go by',

Marked hands of a mother; someday she'll understand
That all the caring and the sharing leave marks on a mother's hands,
Hands that labor gladly for all that God has given,
Hands that fold in thankful prayer to a Father up in Heaven

Someday I'll sit in Heaven at my Savior's knee,
I'll touch His nail-scarred hands and ask just why He died for me,
Marks on the hands of Jesus; marks of a price He paid,
Marks of love amazing in the sacrifice He made,

Marked hands of my Savior; marked by a labor of love,
For only through His nail-scarred Hands will we see Him above,
Then at His feet I'll gaze on Him and ask to understand
The story of such awesome love as I touch the marks on His hands   

Faith sees the invisible, believes the incredible, and receives the impossible!

Ok, so I've said that one day when Zeta fully stabilizes, I am going back to school for some type of medical degree. 

I'm hoping they will give me some type of life experience credit - ha!

I'm learning that I would much prefer being PAID to work OUTSIDE of the home on patients OTHER than my own children! 

I HATE seeing them sick!!!

Steven got sick the end of last week and has struggled on and off with an allergic reaction to the antibiotic since Friday night. 

Can you say Post-Traumatic-Stress-Disorder????

That is what I have diagnosed myself with.........

When Steven started with the fever I was a little worried, when it kept climbing- I became slightly neurotic.  I mean I actually sat and stared at him for a while to make sure I didn't see any signs of seizures.  I mean come on, only 3-5% of children age 9 months to five years typically have febrile seizures.  Steven is pretty much out of that range....but I've also learned that for us - life can be anything but typical!

Thankfully, Steven and Chancelor or rarely very sick....which leaves me ill-prepared for them being anything less than happy, healthy, and full of energy!

When Steven started breaking out in these awful, itchy hives I felt a slight panic settle in....but quickly regained my composure....well kinda.......a few hours later when the benadryl started to wear off and the  hives began working their way up his body (and started looking like hot grease burns) and he started getting sniffy and sneezy and doing that nose rub thing I did begin to panic......just  a little......

Thankfully, we have Barnwell Pediatrics and their nice on-call service!

We were able to go in and get a shot and start some steroids to help with everything. 

Thank you "Mrs. Sara"!

Now, Steven is alternating from feeling really well (and not understanding why I won't let him go outside and get hot) to sitting in the floor, scratching like a dog, and having his nose bleed!

What I've realized through all of this is how much I do depend on Lavonya (Zeta's nurse) and Steve. Lavonya only works with us 8 hours a day Monday through Friday, so I had plenty of time alone with my 2 patients....and  you  see, Stevie was out of town on business when all of this began.  Chancelor was with him (they had some fun time together, too). 

Let's just say it was a little difficult tending to 2 patients on my own when neither Lavonya nor Steve were here.  I was so paranoid about giving Zeta any germs, but I didn't want to leave Steven unattended in another room where I couldn't monitor his breathing, etc.....I was driving myself insane that's all......

Stevie has made choices that would prove difficult for some men, but I am so very  blessed with those decisions.  I am proud of the husband and father that he truly is......I realize that without his support I would often crumble.

Lavonya is my other right hand man.........she has been a God-send for our family and I don't know what we would be doing right now without her! 

I know, too, how very much I depend on my parents.  It' s like they feel it's their duty to make sure I'm alive, well, happy, and functioning........ I suppose that's what parents are supposed to do, but I think mine do it better than most :)

 I never thought it would be possible to need so many people! 

It can be difficult to realize how much you depend on other people.....but I've come to the realization that that is they way God intends it.....we all depend on each other......there is no such thing as a perfect person and no such thing as one who stands alone........

sometimes it's just hard being the needy one

To conclude this rambling blog, I'm happy to report that Zeta is doing well.  This week has been great!  We've got our spunky little girl back...and we're looking forward to more progress!!

......and hopefully, I will figure out how to get that medical degree.........