Did I ever mention that I put up our first Christmas tree of the season at the beginning of November?

Can you figure out that I was  a little excited about this Christmas?  I've always loved Christmas, but something about this season was especially intriguing for me!  It was almost as if I were watching everything through the eyes of a child. I paid attention more....I stopped every chance that I could to just take it all in....and I focused a lot more on the reason as to why we celebrate Christmas....the birth of Jesus Christ. 

For unto us a child is born, unto us a son is given: and the government shall be upon his shoulder: and his name shall be called Wonderful, Counsellor, The mighty God, The everlasting Father, The Prince of Peace.

Most of you know, though, that my Christmas spirit all but shriveled away when Zeta was admitted to the hospital again just a few weeks before Christmas.  I became terribly down.  I was fighting to get myself back to that spot.

Just a few days before Christmas, I was having an especially hard day.  The boys were in school, and I left Zeta with her nurse.  I was on a mission and I had two things on my mind.  One-  to finish shopping, and two- to find someone to bless.  You know you get the best feeling when you can GENUINELY bless someone unexpectedly....  I had some ideas in mind, but decided to wait until something just 'jumped' out at me.....it wasn't long before I found my answer.  I came upon an elderly couple whose car was broken down.  I knew that was where the blessing was due.  I won't go into details, but I did begin to feel a little like one of Santa's elves as I sped away after stopping and talking with the wife briefly. That exchange was just the beginning of re-gaining my Christmas spirit.

I was especially thankful for our family gatherings.  I stopped to think about Christmases past and all the people that we've lost and gained in our families throughout the years.  There sure was a good bit of emotion involved!

....and Santa came by to visit Zeta on his way to church one night....what another unexpected blessing:)

Something that really stood out to me were all the blessings that I have received.  Stevie really surprised me with an unexpected and undeserved gift .... then another unexpected blessing from my parents.  There were friends, family, and acquaintances that remembered our family in so many ways.  Then there was the mysterious person/people who left another anonymous gift in Zeta's medical account, and finally the Christmas card that we received in the mail on the 28th - left unsigned - with a gift of love............  This all led me to ponder on all of the blessings our family has received throughout the year.  All of the fundraisers, gifts of time, and the many, many prayers!!  But I don't put the focus on the material.......I put the focus on the HEARTS of those who have felt led to play a part in Zeta's story.  I truly, truly wish I could name every single one publicly.  I want to shout to the world their praises.  The only thing that stops me is that I know I would inadvertently leave someone out and that would defeat my purpose in sending thanks to  everyone!  I know that God sees my heart and hears their prayers as well as ours....and  I hope that I am able to convey our many, many thanks without naming everyone individually - trust me there is no way you can truly ever know how very, very grateful we are!!

As for Zeta, she is doing ok.  For the most part she is trying to get over her last hospitalization.  We do see lots of instances of her playful personality, but she is obviously still recovering.  We did end up at MUSC on Christmas Eve evening.  Zeta began bleeding from her eye.  When we got to the ER she began bleeding from her mouth.  The only thing they could come up with was that perhaps she had a nosebleed that didn't actually come from her nose, but from her eye and mouth.  I suppose that could make sense - and you know Zeta doesn't like to do anything in a 'normal' way, so that's ok.  They did some blood work to check out her platelets and blood clotting factors, etc and it all looked good so we felt pretty confident about coming back home.  We were so thankful to be able to spend Christmas at home!

On Monday, I got a visit from two friends.  I was so happy to see them and enjoy some real 'trivial' conversation (as my friend calls it).  After they left, I realized it had been some time since I'd had a conversation that didn't revolve around doctors, therapies, hospitals, or kids!  Zeta ran a fever that night, but it has since resolved.  We went to the doctor yesterday for some injections that were scheduled and while we were there they went ahead and did another urine cath and started another round of antibiotics due to some symptoms she's been having this week.  I pray it will all resolve quickly and we'll be back on the road to recovery!

For now, we are enjoying some treasured family time and looking forward to a new year!  A year filled with health, happiness, and thankfulness!

Life is....hard....get over it....with a smile!

Have you ever noticed that we seem to learn the most from things that are the most difficult....

Take for instance the curious child.  You can tell him all day that the stove is hot and will burn him.  However, the lesson he NEVER forgets is when he actually TOUCHES the stove and gets burned.

Why do we have to be so stubborn?

When Zeta was admitted to the hospital again earlier this month I could feel the world crashing all around me.  In many ways it hit me worse than when she was first born.  I suppose I felt a little entitled.  After all, we had flown across the country to 'get her seizures fixed' and it seemed to have worked.  I just couldn't let my mind wrap around the fact that we were in the hospital again and that there were a few pretty big seizures involved too.  (Don't forget we had actually spent 4 months at home - a very considerable accomplishment in Zeta's world.)

I just could not understand it.  I didn't want to accept it.  I may not have shown it to everyone around me, but I was mad.  Mad at the world.  I did not want to go back there again.  I was refusing to accept the situation and it was making it all worse (for me anyway).  I thought I had learned a long time ago, that I can't control anything and that I have to just let go......but not this time - this time I was trying to hold onto my own control as long as I could. I was going to refuse to accept reality.  I was not going to go back to having a sick baby.  Well, we see how that ended up.  Zeta was sick - very sick.  She was in the hospital and I would have to accept it. 

Well, obviously I did accept it, but it was kind of like I was telling myself - "I might accept it, but I don't have to like it."  Not that anyone actually likes being in the hospital - but I suppose, in a way, I was still refusing to relinquish control.  You see, I liked being at home.  I liked sleeping in my own bed.  I liked being able to spend more time with the rest of my family.  I liked having a child that was  little more predictable - and more pink rather than blue. I liked feeling in control. 

In the moment she spiked the first really high fever and had a seizure - I lost control.  In the moment they told me she had another uti and that her kidney function was diminished - I lost control.  Finally, I remembered that I never actually had control.  I didn't realize how much I had been taking for granted.  It took me a while to get over all of this again.  I was really afraid I was going to be permanently bitter.....but.....the bitterness turned to sadness.............and finally, I came to realize that I really still do have a lot to be thankful for.

Maybe I began to have a better understanding when I picked my boys up from school one day this week.  I saw an old friend whom I knew could relate to what I was feeling.  She had a child that was sick from cancer.  As I sat and complained and told her all of the awful feelings that I usually hide from everyone else she listened and I knew that she truly understood.  Then, it hit me.........the difference between her and me is that my baby is  here.  Yes, she went through many of the same things that we are going through, but my baby is here.....we still have the opportunity for another day.....and then....only then.....did I realize how absolutely selfish I had become......

That night, I read an email that told me of another child who had dealt with hypothalamic hamartoma(the overgrowth of brain tissue Zeta was diagnosed with last year). I don't know all of the details, but this child was 'typical developing' and was beating odds, but died unexpectedly in her sleep earlier this week. She was 8 years old.

Do I realize that I'll probably have to deal with death one day?.........yes...............do I know when, who, or where? no............What I realized in that moment is that my friends had learned a very hard lesson, but one they will never forget - COMPASSION............it's the same lesson I've been learning for the past two years.

Perhaps I further came to understand how very much we have to be thankful for as both our families all stood in our house yesterday, and Stevie prayed and thanked God for the blessings that we've received this year. 

Yeah - we've come a long way baby!

So, when you're going through what you feel may be the most difficult circumstance of your life try to remember that somewhere out there, someone  knows exactly what you're going through......and someone, somewhere may even be dealing with something much worse than you.  Don't try to take control.....give it to God and try to find what it is you should learn from the situation............
Trust me, it's much easier than kicking and screaming like a 2 year-old!

I've got to get over it......

Zeta was admitted to the hospital again Thursday.

Before I go any further, I have to get something off my chest.

The parking attendant ticked me off…….so much that I cried……to the point of nauseousness………..

I was mad alright, but the madder I got the more I realized it wasn’t  the parking attendant’s fault (although she was pretty catty).  The angrier I became the more I cried – the more I cried the sadder I got – I realized that what was making me the most angry was the fact that we are back at the hospital again.  I was angry because we were finally figuring out about life at home and now we were back here.  I was angry because this Christmas was like Zeta’s first Christmas but now we’re here.  I was angry because we practically missed the whole Christmas season last year and we’re not supposed to be in the hospital now.  I was mad because my boys …..oh, my boys……if I’m so mad I wonder how they’re doing……If I’m so mad then I wonder how  Zeta feels……Oh, wow – my baby is back in the hospital….then I was SAD.  How unfair.  I am sick of my baby being sick! She had been doing so well……but I knew this was coming.  She has been sick for a few weeks……only I didn’t know things were going to get this bad.

We started November out with an ear infection.  She did well for about a week then became sick again.  This time it seemed like something respiratory – then another ear infection…..then instead of getting better, her temperature just kept climbing ……..and then the seizures started.  We had not had a single glimpse of the ‘BIG’ seizures since July.  I should have known something was seriously wrong by this time, but I think I was in denial.  Even when we were in the ER I never would  have thought she would have been as sick as she was.

Zeta had a raging UTI (been quite a while since we’ve battled one of those too) and her single kidney was failing to do its job efficiently. She began swelling so quickly that it was almost like watching someone blow up a balloon.  Her labs were all over the place…”this is too high, that’s too low….we want to see this number improve….we’re going to watch this one for a little while then we might need to do something different”…. My poor baby has been so swollen that she could not move her hands or feet.  They looked as though they could burst any minute.  Any place that something rubbed on her skin she would get a blister.  She is so miserable! My poor baby.

Thankfully, she is making improvement.  Although still swollen, there is a tremendous difference in yesterday and today.  She even managed to smile some last night.  Her latest labs look good and the last urine culture shows that the infection is clearing. She still acts miserable.  I know I would be miserable too though. 

If all continues to go well, hopefully, we won’t be here much longer!

I apologize for not posting sooner, but I think Trina has done a pretty good job keeping everyone updated on the Team Zeta Prayer Warrior page…..

Plus….if I would have been posting sooner you would have been privy to my temper tantrum…..let me tell you, I don’t have room in my head or heart for many more episodes like that.  I realized I have to turn my focus back to what is important, that I cannot dwell on all that is wrong – or it will make me nuts….  Last night I was reading an article that used a term:  “whack-a-mole misery”- …..wow, I thought – that is just how I feel………..you know the game – once you punch down one of the little creatures another pops up and you’re chasing it all around trying to ‘whack-a-mole’…….Ever get that feeling?  Like once you put one fire out another one starts?  The past few days I feel like I’ve been getting a test in endurance.  This time, my friend, I failed….I let everything fall apart in my mind.  All I could think was, “I don’t want to go back to the way things were.  I don’t think I can watch my baby turning blue or sedated every day and living in a hospital again.”  The great thing is that this morning when I woke up I realized that God was still there.  Zeta is making improvement and my strength is renewed…. and I know that I have another opportunity to use this experience in a positive way……

I’m not angry anymore.

But…….I am weary.  I worry that we have more hospital stays to look forward to or that Zeta’s urologist will tell us tomorrow that it’s time for the ‘big’ surgery.  We assumed (and were told) that the initial surgery done to help prevent kidney damage may not work and if it did it would likely not be a permanent fix, but we’ve become so comfortable with the way things have been.  I do not want to start over again.  I keep telling myself that it’s not going to happen – that she will not be as sick as she used to be.  I’m fighting every voice in my head that tries to tell me otherwise (and in case you’re wondering, no- I don’t really actually hear voices).  I guess what I’m trying to say is I’m scared.  I’m usually the one begging the doctors to let us go home, but this time……this time, I’m afraid that they’re actually going to have to push me out.  Right now it doesn’t help that although all the tests are coming back better she is still absolutely miserable and is acting nowhere near her normal self.

….and another issue?......a few days before she was admitted I kept thinking that Zeta’s breath smelled fishy…………well with all the antibiotics and possible upper respiratory stuff I assumed that would cause bad breath……….but me, professional internet doctor, looked  up ‘fishy breath’.  Guess what it said?  Kidney failure!!!  Why did I not get her to the hospital?  Why did I explain it away?  (other than the simple fact that anything you look up on the internet is going to say that you have cancer, liver failure, kidney failure, etc)  She had been fighting (what seemed to be) the same illness for too long.  Why didn’t I think something else was going on?  I’m her mother.  I’m supposed to know these things! I understand that there is no way I could have known for sure.  I know that I would never purposefully let any of my children suffer.  I know that some people will say I couldn’t have known and others may say that I should have…….                   

Can you tell I’ve been feeling a little guilt here too?

All I can say is that I have faith that we will get through this ……this is one of the times I will openly say I’m holding onto a string. My head keeps trying to tell me one thing…..but….my heart….my soul…..my God……………. are whispering another………………

……..For unto whomsoever much is given, of him shall be much required…… Luke 12:48

The Life and Times of the Brabhams

This post - or tirade- was initially written without anything to do with Zeta or our life full of special needs......but as we all know, Zeta (and Steven and Chancelor) all love a little attention - but we'll get to all of that later......

I intended, however, to show you how we are a "normal" family that deals with 'normal' everyday problems.

Problem #1 Clogged toilet

Fortunately, this is a problem we don't deal with too often. UNfortunately, that means that I, evidently, don't know how to properly plunge a toilet. One of my children (who shall remain nameless) loves toilet paper. Thankfully, the 'business' had made it through the pipes, but tons of toilet paper remained. I tried (unsuccessfully) to deal with this problem on my own. By the time I figured out I needed to turn the water off (after I was standing in a couple of inches of toilet paper filled water) I decided I needed to ask for some help. When the Calvary arrived (IE Stevie and Steven) I was practically swimming in Charmin. Stevie was obviously not impressed with my plumbing skills and he began a little tirade of his own. I couldn't help but laugh at him. He ran outside and reappeared with a large bucket (partially filled with leaves and gunk). We began mopping, scooping, and wiping the sea of toilet paper. We finally seemed to be making a dent in the mess when the bucket got full. Stevie ran away with the bucket...............BUT............as soon as he stepped out of our bathroom- through the dressing room - into our BEDROOM.........the handle on the bucket broke.....Now, we not only had remnants of the mess in the BATHROOM, but a whole new mess in the BEDROOM......Only now we had a pile of water, toilet paper, AND leaves and gunk!!!! It wasn't exactly how I had planned to spend the evening, but hey, what good would yelling and screaming about it do??? Stevie, on the other hand wasn't taking it quite so well (that's probably a major understatement). I walked him out the back door and told him he needed to cool off - imagine a full grown man, half-dressed, pacing and ranting and raving about some spilled water on the back porch in the middle of the night! Not a pretty picture! LOL! We did finally manage to get all of the mess up - the good thing is, my bedroom and bathroom floors are cleaner than ever!!

Problem #2 Rats

People tell me they're really mice, but it really doesn't matter to me - THEY ARE ALL GROSS!!!! Normally, I would never admit that we have a rat problem , but with every other thing that we have going on a few little mice seem menial. In case you don't know, we live out in the middle of nowhere on the family farm (Once someone, trying to find my house, called and said, "I just passed a bunch of corn and pine trees, does that mean I'm near your house??" "Ha --- considering we're surrounded by acres and acres of it you might be"........but I digress) Anyway, each fall after the harvest, the field mice start running for cover. When the weather gets cooler we inevitably end up with a few uninvited guests in our house. On to the point-----On Wednesday, I stood in front of my stove warming the wonderful meal my dear, sweet grandmother prepared for us(ironically, I was on the phone thanking her for the food).....THEN>>>>>>>>>>>>>>>>Out from seemingly nowhere............ pops a RAT- right before my eyes!!!!!!!!!! I think I screamed so loud that I caused him to freeze in fear! "Well, what in the world is wrong, Angel?" Grandmoma calmly asked. "It's a rat, gotta go, love ya, bye!!!" I didn't have to ask for help this time - the Calvary came a runnin'......and laughin'........This was a pretty smart rat. He hid behind a picture frame on the counter. In my quick thinking I decided to get a sticky trap from under the refrigerator. The only problem was one of my helpful, ingenious children (again he shall remain nameless) had put a cookie on the trap.....The problem was in the fact that the cookie was as big as the sticky part of the trap, so the rat had been having a great time chewing all around the cookie without getting caught - the evidence was in all the nibble marks! Eventually, we did catch the rat - but I'd rather not talk about it anymore....uhhhhh....

Problem #3...........I don't even know what to say about this one...........

Can you find what's wrong with this picture?


Yes, there is a hole in my counter. Do you know why there is a hole in my counter?

Because the sink fell down.

Yes, you read that correctly, THE -SINK- FELL- DOWN.

Have you ever heard of such a thing. Last night, I stood there - half the sink FULL of hot water, soap, and bleach - the other side FULL of clean dishes. I heard a crack, but before it could even register what was going on the whole sink fell............ KA-BLAMreallY? Thankfully, Stevie took this plumbing problem much better than the toilet episode. He really just stood there -frozen- for a few minutes trying to comprehend the strange scene. We got the mess cleaned up -

Did I tell you we're having my father-in-law's family for Christmas this week?....bahahahaha .....Dear family -if you're reading this, I hope you're all good with paper plates, Vienna sausages, and going to the bathroom in the woods!!! No, really, we WILL have this all taken care of TOMORROW or some cabinet people will feel the wrath of Angel! (and Yes, I'm speaking of myself in the 3rd person)..........

.....and the saga continues.....I had written about all of this last night and was ready to post when I DROPPED my laptop.........yes, I dropped it. Needless to say, it froze and I had not saved a thing that I'd written so I lost it all.....but I thought this was all just too funny NOT to share,so here I sit again re-writing.....

This is where Zeta comes in - remember, I said that initially this post should have nothing to do with her.....WELL, Zeta went to bed and woke up with fever again this morning....that's only 9 days out of the last 13.......Can I get a 'bless yer heart?' Seriously, I'm not sure what is going on. Initially, I assumed that it was some cold/virus then she got worse so we started some antibiotics. She got better for a couple of days and here we are again. We had a planned appointment on Thursday and they did some more labs looking into her immune system. Dr Brabham (that would be me) has already diagnosed her with a primary immune deficiency.....but we'll see what the results tell us....really, I just want to know how to help her. Please pray that her immune system will be strengthened. That her body will be completely healed. The great thing is that respiratory wise (and seizure wise) she is still holding her own - her blood gases this week still looked good....Have I ever mentioned that her pulmonologist, Dr. Lowell, is the absolute best? (That's a whole other post in itself...maybe I'll share it all in my book one day:)......

Anyway, I wanted to share some of our everyday problems just to show you that we are a 'normal' family with 'normal' problems just like everyone else....Add this to 2 doctor appointments, 4 therapy appointments, a couple of blood draws, and a partridge in a pear tree and there you have it - The Days and Lives of the Brabhams!

Well, maybe we're not completely normal......

But I am thankful that we are a family. I'm thankful that we are together.... That my husband and I still love each other - we even like each other most days....I'm thankful that we are not battling drug or alcohol addictions (food? that's another story).....I'm thankful that none of us are battling cancer.....I'm thankful we have a roof over our heads....I'm thankful I'm not weighing selling my body versus feeding my children......I'm thankful my husband is not deployed to fight in war .......I'm thankful we have a strong network of family of friends.....I'm thankful for so many things that we DO have and so many things that DON't have to contend with.....Many people look at US and say, I don't know how I would deal in your shoes.....Thing is- and I continually say this- we ALL have problems, they're not all the same, and sometimes we feel as if the world is caving in.......Our lives are going to be what we make of it....and we become stronger in FAITH!

This is all the proof I need!

You can never change the past. But by the grace of God, you can win the future. So remember those things which will help you forward, but forget those things which will only hold you back. ~Richard C. Woodsome

Thankful

Awesomeness. My God lives in awesomeness (if that's a word)!

I was raised not to discuss finances or talk about money in an open forum. That's why I try not to talk a whole lot about monetary needs or specifics relating to fundraisers/donations that have been done for Zeta. Forgive me for doing so now, but I must divulge a little in order to illustrate how just how significant God's awesomeness has been today.

The bank statement for Zeta's medical account came in the mail today. I wasn't very excited about opening it because I knew that we spent a TON this month (we purchased a portable oxygen concentrator and finished paying off some bills from her surgery in Arizona). I loathe the thought of not being able to pay her expenses or provide her with everything that she needs. We've been VERY fortunate in this as well as many other areas.....But, imagine my surprise when I saw a CREDIT noted as "miscellaneous" on her account. This was a pretty significant credit so I immediately called the bank. They told me that it was a cash donation to the Zeta Brabham Medical Fund, and that was all they could tell from their system. They told me to call our local bank for more information. When I called the local bank they told me the same thing - cash donation. I still wasn't completely comprehending it all.

At one point the lady told me it was a transfer - "Can you tell me which bank it came from or the name on the account?" I asked.

Then she said, "No, looks like it was just a cash donation."

"Can you identify which teller did the transaction?" I asked anxiously.

She complied and returned to say that all she could tell me is that the donor wished to remain anonymous and there would be another credit on our next statement."

Tears fell, and I was speechless for what seemed like an eternity. I finally managed to tell Barbara (that was her name) "Please, please, if you know them or see them, or hear from them again - PLEASE let the person know how VERY GRATEFUL we are!!!!" "We definitely will, sweety. We surely will."

Oh, and I failed to tell you that the amount deposited covered ALL of Zeta's expenses this month and then some.

Do you see God's awesomeness in this now?

It got me to thinking: Who is this person/people? Why would they do such a thing? Who are we to receive such grace and trust? Why would someone do something like this and not want anything in return....not even the recognition or thanks that he/she/they deserve? .....It also made me think of how much even more God sacrificed for us......

Then I thought back to an email exchange I had with someone a while back.....

I've copied and pasted what he wrote:
So, here’s the thing. And you already know how it works. Matthew wrote it as well as it has ever been written.
"And the King shall answer and say unto them, Verily I say unto you,
Inasmuch as ye have done it unto one of the least of these my brethren, ye have
done it unto me." (Matthew 25:40) I believe that to be true with
all my heart. Harry Emerson Fosdick put it a little differently: "Until
willingness overflows obligation, men fight as conscripts rather than following
the flag as patriots. Duty is never worthily performed until it is performed by
one who would gladly do more if only he could."

Up to this point, I have only done my duty. Now, I’m asking what more I can do. Considering
Matthew’s words above, please be careful about depriving others of the
blessings that are theirs to be had from providing true service. Remember
too that more often than not the Lord answers prayers through other
people. He hears yours. Be careful to not brush away His answer
when it arrives.

PS....Although the Glory is God's I sure hope whomever did this follows my blog:)

update

Do not dwell upon your inner failings ...Just do this:  Bring your soul to the Great Physician- exactly as you are, even and especially at your worst moment.....For it is in such moments that you will most readily sense His healing presence.

~Teresa Avila

I've been informed, more than once, this week that it's past due for an update.

Sometimes, I find I am more than ready to pour out my heart and soul into writing about our experiences.  Like I have to get it all out of my system.  At other times, I feel like I need to keep things to myself because I feel like I'm always complaining about one thing or another.

So, here goes....

The things that have been gettin' my goat lately:

  1.  Insurance
   Sometimes, I feel like they train the insurance people to make my life miserable - on purpose...yeah, like a written script or something.  My rational self tells me this is not so, but after calling insurance(nearly EVERY day this month) Zeta has FINALLY received approval for some injections she needs..... so explain that........and another thing - they send me an EOB and a letter that says they've sent me a considerable size check to send to a company that has been patiently waiting for they're reimbursement - only thing is the check didn't show up....well, at least not until 2 weeks after the time insurance said it was sent.....    I just know that our insurance file is red flagged....I know that when I call, they see my number (of course they have caller i.d.) and they start giggling...."let's play the pass her around and put her on hold game and see if she'll hang up this time....and if she doesn't then let's just say we'll call her back tomorrow....and when she calls tomorrow we'll play again"....Seriously, talking with insurance is sometimes a challenge in mental stamina.

And while we're on insurance.......
  2. Our life is NOT boring
   Steven broke (or, rather, cracked) his foot last week.....and, I don't know how, but insurance claims we have not met our out of pocket nor deductible for this year.  Evidently, I don't know how to read all those letters and forms and stuff they send us.  Nor do I understand how any of it is calculated.  I suppose since none of the rest of us go to the doctor that Zeta cannot reasonably meet our complete out of pocket and deductible all by herself.  Steven and Chancelor must have some inkling of this and decided they needed to get in on a little of the doctor action.  We've spent more time in their doctor's office this month than we have in the last five years.  I'm beginning to wonder - were my children just magically not sick last year, or do I just not remember since Zeta and I were always in the hospital?....... Oh, by the way, Steven has to wear this boot thing for 6 weeks - and not horse around .....or jump....... or climb during these LONG 6 weeks - do you know Steven?????  If you do then you know that this is virtually impossible!  One positive thing that I can say is that I've found that I have to make myself more ACTIVELY engaged in doing things with Steven so we can try to avoid having him finish breaking his foot in half - or worse breaking something else!  Chancelor has become very clingy, and weak and sickly at times.  Good thing is.....it forces me to pay more attention to him when I have the opportunity.

3.  Nothing is predictable
 PLAN anything?   Uh,....no.   I don't even try to plan to do anything outside of the house unless it is a doctor or therapy appointment.  Do you know how hard it is to feel like the sole person responsible for making sure another person lives through the day (add to the fact that that person is your CHILD!)  I do not, and most often - cannot - get out of the house to do certain things with or for my boys.  I am referring to the fact that although our overall doctor appointments have decreased in frequency Zeta is still unpredictable.  She gets sick and runs fever every 10-14 days.  So I spend the couple of days prior, and a few days after, staying close by for fear the fever will get out of control or she will start with the huge seizures and blue spells again (fortunately they haven't).  Since our doctor's visits are getting fewer and farther in between it means we are beginning to be able to schedule OT,PT, Speech, and Vision therapy more consistently and more frequently.  It's wonderful that we are finally to this point....although it is still
pretty exhausting. ......

next....

Do anything outside of the hours that Zeta's nurse is not here?  Unheard of.... Going somewhere or doing something if we don't have a nurse usually requires that Stevie take off work so I would be able to go anywhere (as he is the only other person comfortable and partly qualified to tend to Zeta) - but shhh, don't tell him I said only 'partly' qualified lol-  .  Honestly, the only person I feel 99.99% confident in leaving her with is her nurse...and if we're being completely honest - right now, she is the only other person that  feels qualified AND comfortable staying alone with Zeta.    She knows this, and I think she knows how much we appreciate her....but I can imagine she probably feels a good deal of pressure too.   Even Stevie doesn't feel absolutely 100% comfortable being alone with Zeta for very long periods of time.  I imagine it is difficult to feel comfortable unless you are used to doing everything she needs on a daily basis.  Zeta actually qualifies for more nursing hours, but we don't utilize them because I still don't think I would sleep even if we had a night nurse....I would be too busy listening to figure out  what was going on....and plus there are times that we just need some alone time as a family...... and at this point it is just not worth it for them to send a temp nurse if our regular nurse is not able to work....I would spend more energy teaching and looking over her shoulder than anything else.   

The flip side of all of this is that although it seems our life is exhausting and sometimes hard to manage we do find ways to manage and counteract.  We do realize that things could be much worse.  We could be trying to do this without a support network.  Fortunately, we have the most awesome families and close friends that help us. We could be where we were a year ago.  We could still be fighting the blue spells everyday.....We could still be spending days, weeks, and months every  week or two in the hospital.......but instead we are getting stronger.  Zeta is finally at a point where I can comfortably say she is fair and stable (and be speaking in terms of her general future rather than just the day or the moment). We are finally getting past the 'guarded' stage.....feeling a little more comfortable each day.  We are home, together, as a family.  I am able to spend more time with my boys.  We are learning to enjoy normal things together as a family again  (not just the borrowed moments and days here and there).

In a way, being the parent of a child with special needs doesn't feel a whole lot different than being the parent of a typical child.  Some days, you're flying high - feeling like Superman on steroids.  Other days, you feel so grossly inadequate that you just feel like giving up.....but then....then you look into your child's eyes and you know that nothing could ever make you give up......  Maybe part of the difference lies in how you feel pulled in so many different directions.  If you give one child all that he/she needs then your other children feel-  or are-   neglected at some point.  It is never intentional, but sometimes it is unavoidable to give one child the care they need without disappointing the other......and .....trying to put forth effort into anything else besides making sure your children are dressed, fed, cared for, and feeling loved  sometimes feels impossible.

Now, do you see why I feel like I complain so much....it feels like I invite you into my pity party.  If you ask how I am, you probably want to hear 'fine'......but sometimes I just can't give you an answer like that.......there are days I would like to just break down and tell you every little thing that has gone wrong.....But I can't do that......and I tell myself I won't do that .   I have to tell myself I won't do it because I look at where we started, what we went through, and how much God an d everyone around us has pushed us through.  I understand, I realize, I KNOW  how very much we have to be thankful for.  I know we could be back where we were.  I know someone, somewhere - right now - is praying and holding onto that one  thread of Hope and Faith  - that one grain of their being that reminds them they are not alone -as they keep watch over their baby or deal with whatever situation is challenging them at the moment. I realize what it means to be thankful for this day, this moment.  I realize how infinitely blessed we are!!

I believe that nothing that happens to me is meaningless, and that it is good for us all that it should be so....As I see it, I'm here for some purpose.
~Dietrich Bonhoeffer

Hope for HH

Check out Zeta's story on the Hope for Hypothalamic Hamartoma website here....