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....

One more thing

Finally got a chance to read my daily devotional.........

If you've been following my posts (especially the last one) then this needs no explanation....if you read nothing else, just pay attention to the highlighted part at the bottom......

No, I don't make this stuff up.

Yes, I'm listening.

I don't make this stuff up

It seems as though Zeta might not be too excited about getting rid of her ventilator.

I really don't make this stuff up........

Last night, I had her all prepared and ready for bed - WITHOUT her vent. I was so excited, because I was sure that she would have an awesome night.......and a little nervous that she might not have as much energy today.

Well, thing is.....I took a shower and got myself prepared for bed.....and something told me to check on Zeta.

FEVER--------------102.8 to be exact....in that small amount of time. She was having some small seizures and her heart rate was high. (Have I told you that I still get EXTREMELY paranoid anytime she has a fever???)

I gave her some meds to get everything under control and thankfully they all worked beautifully!

You probably figured this out by now, but she slept WITH her vent last night (and has had it most of the day too, boo-hoo).

Thankfully, she is stable and she hasn't had anymore fever. We made a quick run to her pediatrician, got some antibiotics , and she has mostly slept today. (Which is what I think I should be doing since I have a feeling we're going to be in for a loonngg night......but instead I feel the pressing need to write and worry about my boys staying away from home, again.

So, I think I should have been very prepared to expect the unexpected. (The only thing predictable about Zeta is unpredictability)

I've bounced back and forth between sad acceptance and repeating the word 'unflippinbelievable' over and over in my head.

Oh, well....

God makes the plans

and Zeta plays by her own rules

Some days, I feel like I'm just along for the ride.

I received a book in the mail today.

Name of the book? For I know the PLANS I have for You: Promises of Life

First quote I read as I randomly flipped the book open to page 121..... "God wants us to approach life, full of expectancy that God is going to be at work in every situation as we grow in our faith in Him." ~Colin Urquhart

My dear, sweet cousin bought this book a few weeks ago, but just mailed it.........

Can I just say two things?

Yes, God, I'm listening.

No, I don't make this stuff up.

BIG NEWS

There's a conversation that I've been re-playing in my head for a couple of months.....

When we returned from Phoenix, after Zeta's brain surgery, a doctor said something to the tune of- "yeah, why shouldn't even Zeta have been afforded the same treatment as any other child with this type of tumor?".......

Now, as a typical parent you might become a little defensive because.... of course your child deserves as much as any other child.......As a parent of a special needs child D-E-F-E-N-S-I--V-E-N-E-S-S  can only be explained as an understatement...

                                  Because.....
                                     Because.......

HECK , Yeah - my child deserves an opportunity to live life to the fullest.  Heck, yeah - my child deserves a shot at a chance at life without seizures ravaging her body.  Heck, yeah my child is WORTH it!

Now, I understand that the doctor (whom I really like) did not mean anything negative in his comment..... but as a parent who - at times - has had to fight tooth and nail to have my child's needs heard and met..........well, let's just say sometimes I can take things a bit personally..........

Now, all of that aside - I relish in how much improvement we have seen in Zeta since surgery.  Just this week alone she has all of a sudden gained so much more head and trunk control.  She seems to become more active everyday!  I stand in amazement at how her health has improved overall.  I rejoice in the fact that we haven't had any sick hospital admissions!

NOW - Here is the BIG news---------

We talked with Zeta's pulmonologist yesterday and had some lab work done.......
         
                          Zeta's blood gases were   * quote    BEAUTIFUL   unquote*.

What does this mean???

It means we will begin working toward the ultimate goal of taking her completely off the ventilator!!!!!!!!

It seems as though this will be a PROCESS.....maybe a s.l.o.w. process.....but still a process which equals PROGRESS!  We will start tonight by letting her sleep WITHOUT the ventilator (first time since January).  Then we will repeat the process every fourth night and have her blood gases re-checked in 2 weeks.

Putting Zeta on a ventilator saved her life (on more than a few occasions) and made her quality of life at home much better than it had been without it........this is a bittersweet feeling.....we may finally be working toward getting rid of a machine that we have depended on (and were so thankful for) for so long.....at the same time I am scared out of my mind...I definitely don't want to go back to 'where we were'......Ironically, though, I don't think we'll be there....I think so many of her problems could be attributed to the neurological stuff going on that now that the tumor is gone we are definitely going to remain on the road to recovery.......

EXCITED? - Heck Yeah!!

NERVOUS? - You betcha!

 

FAITHFUL IN GOD'S PLAN? - Without a doubt!!!

Wake Up

"WAKE UP!!!!" This is what I feel like shouting sometimes.

I mean, really - when are some people gonna wake up and 'get it'. Know what I mean by get it? I mean, when are we going to realize that we only have ONE life. We get ONE lifetime to make a difference, and ONE opportunity to make choices that will ultimately affect our eternity. Sometimes, we are only given one opportunity to make a difference in another person's life. What happens if we bypass the chance to make a difference - a real difference in some one's life? What if we miss the opportunity to truly help someone in need? What if we turn our backs on God?

I'll tell you what happens....we become a self-centered, self-absorbed entity. When we turn our backs on each other, we turn our backs on God. We decide that it's not our problem. We rationalize that we don't have the time to help. We make ourselves believe that we're not good enough, rich enough, or smart enough to do anything to make a difference. We convince ourselves that situations are hopeless. People go hungry, people die, lives are broken.

Let me tell you, I've experienced firsthand how much (and how little) one person does can affect a life. Words can sometimes make or break some one's day, some one's attitude or even some one's LIFE. I think back over our experiences with doctors, nurses, and hospitals over the past 20 months and I KNOW that we have been blessed more often than not. I know that those first few months God knew that we needed encouragement to prepare us for our life ahead. He specifically planted knowledgeable and caring doctors, nurses and staff in our path. He has continued to bless us with people who believe that our daughter, and our family, are worth the time.....and worth the effort. In the rare instances that we have come across someone who seems not to have the time.....or perhaps doesn't seem to really care - I try to give that person the benefit of the doubt. I have to believe that no one would spend their life working to be successful as a doctor or nurse to just blow it. I have to believe that every human has the capacity to care. I have to believe that somewhere in their heart they have some understanding that there is always some way to make a difference. I mean, even when it comes to life and death situations....even if a doctor feels there is nothing else they can do to help someone....surely they understand that the way they convey that information to the family can impact that family (or that child) FOREVER.

Not coincidentally, God puts things on our hearts and in our minds for a reason. Sometimes we don't understand the reason.....and sometimes we do not like what we feel He may be asking us to do. Sometimes it takes us a long time to even realize what it is that He wants us to do. Sometimes we don't understand why certain things happen.....and sometimes we might even question if God is listening or if He is even real. I find myself falling into this trap sometimes. I feel like God has presented Himself to me in a way that I should have ABSOLUTELY NO DOUBT as to whether or not he listens or if He is real. Sadly, though, when I feel like things aren't going my way I have a tendency to begin to begin doubting again. I'm not proud to admit it, but I feel it is important to be honest. The era of the hypocritical Christian should be forever gone. Non-Christians are constantly looking for holes in our stories.....a reason not to believe.

Friends, I'm here to tell you HE IS REAL. (Hold on ----here comes the evangelist) Like it or not. Believe it or not. I have every reason to BELIEVE!! I cannot tell you how many times I have prayed to God (and then finally chose to listen). I cannot tell you how I've begged, bargained, and pleaded. I began praying that Zeta would be healthy even before she was born. I believed that God was God and He could (and would) make her whole. He could erase all the issues that we were scared would happen, but God's plan was not mine. If the answer is 'no' or 'not now' - that I'm not yet sure of......I still pray for her health, but my prayers have changed. I pray for peace, I pray for acceptance, I pray to have an open heart to accept what I am to learn from it all. I pray for all of my children. There have been a few times that I have been completely broken and told God that I had no idea what to say, or how to pray...or even what I should be asking...........should I ask for healing......should I ask for peace.....should I ask for it all to be over?????.......I read in the Bible that I should just sit still and let God be God. On more than one occasion that is exactly what I have had to do. I had no more prayers left in my body and no more tears left to cry. I had to leave it with Him and trust that it was His answer, in His time, for His Glory and for our good. My prayers have changed. Now, even when I do not have the words to pray, I know that He knows my needs. I know that He has not and will not forsake us.  We are given  the opportunity to  see God's love and light in others. We are given the opportunity to be the light for others. Does it mean that we give up? Does it mean that the pain hurts less? The answer to both questions is no. What it does mean is we grow....we evolve.....I believe.....we change....... for the better.

I am very excited to share that I am hopeful that my and God's plans may finally be showing some similarities. Today, she is active - full of life....and personality.    Zeta has not had a 'sick' hospital admission since just before her brain surgery in July. This is no less than miraculous, considering her past 21 hospitalizations and spending over half of her life in ICU. I whole-heartedly believe that surgery to remove the HH was one of the BEST decisions that has been made in her care thus far........We've come to realize that any time she leaves the confines of our home she is susceptible to any germ lurking in the air......She picks up every little thing...thankfully, she has been able to overcome these little sicknesses at home without the assistance of the hospital. I was recently reminded that she is a child that -on paper- should still be in a hospital, or in an institution somewhere.....There are a lot of times that I kind of forget that though.....I want to take her everywhere - to church, to the zoo, to the movies.....I want her to experience life....but more than that.....yes, even more than that - I want her to experience love.....and I want her, and all of my children, to know God.....so for now I will try to be more accepting of the fact that we still live a sheltered existence.....but knowing that Zeta is growing stronger every day while she amazes us with all the strength she has shown.

Thank God for this day you have been given. Smile. Share a kind word. There may be someone aching to feel accepted or be loved. There may be a newly dedicated Christian who (like us all) still feels like he is floundering. Encourage him. You never know when the smallest thing you say or do may change a life!

I expect to pass through this world but once. Any good therefore that I can do,or any kindness that I can show to any fellow creature, let me do it now.  Let me not defer or neglect it, for I shall not pass this way again.  ~Stephan Grellet

Progress

"Progress, of the best kind, is comparatively slow. Great results cannot be achieved at once; and we must be satisfied to advance in life as we walk, step by step." ~Samuel Smiles

Progress is progress....right?

Ever wonder why we push so hard to make sure we're always first? Is it really always that important?

Many times the faster the progress, the better......

I'm learning, though, that there is something bittersweet about slow progress.

This time last year, Zeta was in the hospital (again) fighting for her life. The whole admission lasted almost 2 months and she ended up with a trach in order to survive. There were times during that admission that I can honestly say devastated us, but there were also times we were ecstatic.....

I remember after she was trached and I finally got to hold her (she had been very ill and sedated for almost a month). I began crying uncontrollably when the respiratory therapist handed her to me. He (the RT) told me that it would be ok - that we would get used to the trach. Only, I told him, he didn't understand that I was crying tears of great joy. I realized that Zeta had made it through another obstacle. The progress had been slow, and it wasn't what we would have wanted or expected at the time, but our baby was breathing. She was awake, alive, and breathing, and she was not struggling to take each breath. Yes, it was progress. Yes, I cried tears of joy!

Lately, I realize just how much progress we have made.

Zeta has not had a 'sick' hospital admission since the beginning of July - that was 3 months ago. Prior to that she had only made it about a month out of the hospital - and only twice had she accomplished that feat......So, yes, 3 months without a sick hospital admission is excellent progress!!

She has recently experienced some small breakthrough seizure activity and experienced some ups and downs with her health (for instance, a mosquito bite can make her quite ill) BUT through every illness she has experienced since her brain surgery, we have- fortunately- avoided the hospital!! Now THAT's progress!

This past week we have been talking with doctors about the steps necessary to begin weaning Zeta from the vent and toward downsizing her trach. Granted, this is just talk right now, and the process itself could take a year or more - but hey, that's progress.....

We have made progress as a family this year. I would like to say that we take a lot less for granted!



I realize just how much the 'little' things mean. I understand that what may be progress to me may not mean anything at all to someone else. I think I realize these things more because I have two special boys that are typical and a special little girl that is anything but......

I've always tried to teach my children how important it is to love one another and to respect people and our differences. I realize now that I've never had a complete understanding of just how important it is..... I'm not just talking about children with special needs....I'm talking about anyone that is different from me......anyone that seems to be having a bad day.....anyone that is angry......ANYONE that doesn't fit MY EXPECTATIONS.........

I would like to think that every single one of us possesses intrinsic good in our hearts. After all, God made each and every one of us. I suppose that is why it is so easy for me to get emotionally involved. We all have problems. We all have ups and downs. We all have a story. Just because someone doesn't meet our expectations or because they don't seem to be making, what we consider, progress does not mean that we get to write them off.......

Example #1:

I have a friend that works with underprivileged children. Her husband asks, "Do you really think you can save them all?"

When you look at it that way it is easy to become overwhelmed and give up on even attempting to try to help the situation. But, when I think about my daughter and how that scenario could easily be(and at times probably has been) transferred to her situation it really makes me think.....What if all doctors assumed that it was pointless to work on trying to save a child with so many health issues....to ME it's a huge deal....now imagine....WHAT IF IT WERE YOUR CHILD? Would it make a difference then? Don't you think that if my friend can help even one underprivileged child then it's worth it?

Example #2:

I have a friend that is not a 'hugger'. Sometimes, this is very hard for me to comprehend because I'm pretty touchy-feely, although I try to respect those who are not. There have been times that I've thought that non-huggers must be kind of, let's say, non-caring. In reality I understand that this is not true. It truly hit home for me last week. My friend told me that I should feel good because I'm a hugger. She told me to imagine NOT being a hugger (like her). She said that she could not remember the last time someone just hugged her and told her it would be ok. In some ways, I know (or at least I think) she was craving this contact, but for her a hug would mean the possibility of openly expressing emotion (crying) and that might indicate weakness. I understand that completely. So I will try to be better about at least offering a word of comfort or maybe just a kind word every now and then to let her know I'm thinking of her (and yes I'm going to sneak a hug in there next time I see her too:)



We all feel like the world is caving in on us sometimes. Sometimes we accept it and try to move on. Sometimes we just get stuck. We all deal in different ways. When I'm having an especially difficult time I absolutely will NOT talk on the phone - weird I know, but true (oh, and I can consume BAGS of Reeses during those times too). It doesn't mean that I don't appreciate anyone who is trying to talk to me, it just means I don't know how to handle the emotions of it all at that particular time. I guess it's kind of the same with non-huggers, or the people who scream profanities, or those who transfer their anger to whomever happens to be around. Yes, we all handle things differently.... My hope is that I can always try to remember to take that into consideration when encountering someone that I feel hasn't made the progress that he/she should (ie doesn't progress in the way I expect)......

Always remember.....progress IS progress....and change can be beneficial.....things may not always go the way we plan or the way that we want, but without change there is not progress....without the experiences that life affords us we may never reach our full potential.....and without faith we may not even recognize the progress that we have made........

"Don't wait until everything is just right. It will never be perfect. There will always be challenges, obstacles and less than perfect conditions. So what. Get started now. With each step you take, you will grow stronger and stronger, more and more skilled, more and more self-confident and more and more successful." ~Mark Victor Hansen

Being infinitely patient means having an absolute knowing
 that you're in vibrational harmony with the all-creating force
 that intended you here. You know that everything will happen
 at just the right time, at just the right place, with just the right people.
 Dr. Wayne Dyer

Wait for the Lord; be strong
and let your heart take
courage; yes, wait for the
Lord.

Psalm 27:14

I've officially let Zeta get rid of her no-no's

Only I think she may have thought it was a trick.....She wasn't very sure whether or not she should put her fingers in her mouth.

It didn't take her long to change her mind though.

I spend a lot of time pondering the meaning of a print in my kitchen.......

At some point I thought that I had at least some understanding of how to make things simple....

If life were really simple, I would not rack my brain every day trying to figure out what the latest research says about microcephaly, blindness, developmental delays, chronic illness, seizures, rare multiple congenital anomalies and a host of other baffling medical issues.

If life were simple, I would not be counting the days and weeks between hospital admissions.  I would not worry because we don't have an official name for whatever is happening with our baby.

I would not have that little voice in my head - the one that I hear every time I hear about a new pregnancy.  The one that tells me I must pray relentlessly that this child and family will not encounter the circumstance of anything less than perfect health.

I would not avoid answering the phone when it rings.  I would be able to have a normal conversation with a friend.

If life were simple, I would not fall apart when my husband walks through the door if I've been home alone all day.

If life were simple, I would not spend nights watching each child sleep and  then crying over what could have been or how I've messed up in some way.  I would not worry that each of them is getting the nurturing love and attention they each so richly deserve. I would not worry that each ache or pain could possibly be life threatening, and I wouldn't worry that they have been just as deeply affected by our experiences as I.

No life is not simple.

Not just for me - but for any of us.  We all have days like this.  Granted, some more than others. BUT when you have a problem or a difficult circumstance it IS THE MOST IMPORTANT and the worst possible thing that could be....because it affects YOU, YOUR child, or YOUR family........and then life isn't so simple anymore....

God never promised easy, BUT He does promise never to forsake us.

"Be anxious for nothing,
but in everything by prayer
and supplication with thanksgiving
let your requests be made known to God.
And the peace of God,
which surpasses all comprehension,
shall guard your hearts
and your minds in Christ Jesus."
Philippians 4:6-7

The foundation many have worked to build under me has given me the assurance that I can place my faith in the Lord.  I pray because I have to....I also pray because I want to..... I pray because it gives me solace.  I pray because it strengthens my faith.  Funny thing is....Faith has also strengthened my prayer life. 

Above all, PRAYER SIMPLIFIES THINGS.......

How much more simple can you get than to give it to the One to which it belongs....just as our lives are not our own or problems are not all our own either.

If I CHOOSE to spend every waking moment wrapped in fear.....If I CHOOSE to question every single thing that has happened in my life.....If I CHOOSE to be timid - I LOSE.  Life loses it simplicity and I simply become wrapped up in all of the what ifs.....

For God has not given us a
spirit of timidity, but of power
and love and discipline

2 Timothy 1:7

I tell myself each day I HAVE to CHOOSE to simplify..........

THIS is why -

Isaiah 40:29

He (God) gives strength to
the weary, and to him who
lacks might He increases
power.

Surgery update

“When you have come to the edge of all light that you know and are about to drop off into the darkness Of the unknown, Faith is knowing One of two things will happen: There will be something solid to stand on or You will be taught to fly.”

This is Zeta pre-surgery.  Her daddy said she looked as if she had magical powers.  He is not always impressed with how I dress her lol.

Zeta went through her cleft repair/ENT procedures like a champ!

BUT...Who would have thought that one of the relatively more simple procedures would cause so much anxiety and exhaustion?

The doctor let us come home Saturday.  By 3AM Saturday morning I was wishing we were still in the hospital.  I'm still not quite sure what happened, but Zeta started making choking/suffocating noises and then she started turning blue - while on  the ventilator.  I tried suctioning her, but nothing seemed to be stuck in her trach.  She continued to fight for air and started turning a deeper shade of blue so I changed her trach and called for Stevie to come help me.  All the while I kept telling myself, "We need to call 911, we need to call 911." - but I couldn't stop what I was doing long enough to pick up the phone. Finally, after resuscitating her with the ambu-bag for several minutes she calmed and started to pink up a bit.  Needless to say I didn't leave her side the rest of the night! I suppose there is a lot of swelling from the surgery and all the injections.

Last night we managed a little better - except for the fact that her trach came out a few times.  She desats (loses her oxygen saturation) almost immediately now if the trach comes out- again I think due to the swelling.....

I've also been convinced that I've been seeing the smaller seizures, but today has been better so hopefully they are beginning to resolve.

I feel like crawling in a hole and sleeping (and not using my brain) for a while right about now......

Zeta has to wear no-no's on her arms for the next 2 weeks. These are braces/restraints they use to keep her from putting her fingers in her mouth.  It could probably go without saying, but she can't stand it! 
She has also figured out how to escape from the braces.  They gave us two different types and she has managed to get out of both - more than once - regardless of who puts them on...

So, today.....her nurse and I have added some socks and leg-warmers to the mix. She isn't too thrilled about this either.  By the way, she just managed to get out of one of those too as I'm writing!

Today, I am praying we have no more blue spells, no more seizures, and a speedy recovery!

Thank you for continued prayers!!

Faith is staying focused on the positive and being grateful for what you
have. Faith is trusting that the right answer to a problem will come to you -
it's waiting patiently until things get resolved - knowing that prayer can be
answered in many ways.

We've made it through another week quite uneventfully less the ear infection.  Thankfully, Zeta got over the fever and series of small seizures quickly. Her ear continues to drain - but no fever.  Every now and then we catch a glimpse of what may look like a small seizure, but still nothing compared to what we saw before her brain surgery.

We're counting down the days until her upcoming surgery.  She will finally get the cleft repaired and they will be looking at her airway and doing some other minor ENT things.  She will also have a repeat MRI to look at her brain since she is far enough out from surgery for the swelling to be gone.  While we're there we plan to have a repeat x-ray of her leg and some lab work. Please pray she is infection free by the day of surgery and that all goes well. Pray that all remnants of the tumor are gone.


On a totally different note, one of Zeta's care coordinators recently told me that she was glad I was doing a blog about our experiences.  She said that a lot of parents end up shutting everyone out and just basically withdrawing from life.  I've been thinking about this a lot lately.  Although I have shared many of our journeys in a very public manner, I have still managed to shut out some of those closest to me.  I understand the feelings of isolation and the feelings that no one could possibly understand what I'm going through...the feelings of shutting people out simply because you truly lose touch with reality.....your world goes off into some surreal orbit .... and the new reality is filled with hospitals, doctors, nurses, therapists, insurance, and medical equipment....BUT I've made it to a place where I can say....."Look at how far we've come!" 

Shortly after some of Zeta's first diagnoses I found a blog with the most poignant letter addressed to a parent of a child with special needs.  I cried as I read it over and over.....I couldn't begin to understand how my life would ever again be "normal"....but with a lot of FAITH (and stories of those who had triumphed before us) I was quickly able to catch glimpses of our 'new normal' on variable days.....fortunately those days turned into weeks and more recently I've been able to count in terms of months - 2 to be exact:)

My ultimate goal at this moment? 

To THANK GOD AND LET EVERYONE WHO HAS PLAYED A PART IN OUR LIVES KNOW HOW GRATEFUL WE ARE FOR HELPING US MAKE IT THIS FAR!!!

I'd like to share the letter with you......get your tissues ready-

 

welcome to the club

Filed under: Uncategorized — by jess @ 10:47 am
Tags: autism diagnosis; autism. autism awareness; parenting a child on the spectrum; autism spectrum

My dear friend,

I am so sorry for your pain.

Don’t worry; no one else sees it, I promise. To the rest of the world, you’re fine. But when you’ve been there, you can’t miss it.

I see it in your eyes. That awful, combustible mixture of heart-wrenching pain and abject fear. God, I remember the fear.

I see it in the weight of that invisible cloak that you wear. I remember the coarseness of its fabric on my skin. Like raw wool in the middle of the desert. You see, it was mine for a time.

I never would have wanted to pass it on to you, my love. I remember so well suffocating under the weight of it, struggling for breath, fighting to throw it off while wrapping myself in its awful warmth, clutching its worn edges for dear life.

I know that it feels like it’s permanent, fixed. But one day down the line you will wake up and find that you’ve left it next to the bed. Eventually, you’ll hang it in the closet. You’ll visit it now and then. You’ll try it on for size. You’ll run your fingers over the fabric and remember when you lived in it, when it was constant, when you couldn’t take it off and leave it behind. But soon days will go by before you wear it again, then weeks, then months.

I know you are staring down what looks to be an impossibly steep learning curve. I know it looks like an immovable mountain. It is not. I know you don’t believe me, but step by step you will climb until suddenly, without warning, you will look down. You will see how far you’ve come. You’ll breathe. I promise. You might even be able to take in the view.

You will doubt yourself. You won’t trust your instincts right away. You will be afraid that you don’t have the capacity to be what your baby will need you to be. Worse, you’ll think that you don’t even know what she needs you to be. You do. I promise. You will.

When you became a mother, you held that tiny baby girl in your arms and in an instant, she filled your heart. You were overwhelmed with love. The kind of love you never expected. The kind that knocks the wind out of you. The kind of all encompassing love that you think couldn’t possibly leave room for any other. But it did.

When your son was born, you looked into those big blue eyes and he crawled right into your heart. He made room for himself, didn’t he? He carved out a space all his own. Suddenly your heart was just bigger. And then again when your youngest was born. She made herself right at home there too.


You are so much stronger than you think you are. Trust me. I know you. Hell, I am you.

You will find people in your life who get it and some that don’t. You’ll find some that want to get it and some that never will. You’ll find a closeness with people you never thought you had anything in common with. You’ll find comfort and relief with friends who speak your new language. You’ll find your village.

You’ll change. One day you’ll notice a shift. You’ll realize that certain words have dropped out of your lexicon. The ones you hadn’t ever thought could be hurtful. Dude, that’s retarded. Never again. You won’t laugh at vulnerability. You’ll see the world through a lens of sensitivity. The people around you will notice. You’ll change them too.

You will learn to ask for help. You’ll have to. It won’t be easy. You’ll forget sometimes. Life will remind you.

You will read more than you can process. You’ll buy books that you can’t handle reading. You’ll feel guilty that they’re sitting by the side of the bed unopened. Take small bites. The information isn’t going anywhere. Let your heart heal. It will. Breathe. You can.

You will blame yourself. You’ll think you missed signs you should have seen. You’ll be convinced that you should have known. That you should have somehow gotten help earlier. You couldn’t have known. Don’t let yourself live there for long.

You will dig deep and find reserves of energy you never would have believed you had. You will run on adrenaline and crash into dreamless sleep. But you will come through it. I swear, you will. You will find a rhythm.

You will neglect yourself. You will suddenly realize that you haven’t stopped moving. You’ve missed the gym. You’ve taken care of everyone but you. You will forget how important it is to take care of yourself. Listen to me. If you hear nothing else, hear this. You MUST take care of yourself. You are no use to anyone unless you are healthy. I mean that holistically, my friend. HEALTHY. Nourished, rested, soul-fed. Your children deserve that example.

A friend will force you to take a walk. You will go outside. You will look at the sky. Follow the clouds upward. Try to find where they end. You’ll need that. You’ll need the air. You’ll need to remember how small we all really are.

You will question your faith. Or find it. Maybe both.

You will never, ever take progress for granted. Every milestone met, no matter what the timing, will be cause for celebration. Every baby step will be a quantum leap. You will find the people who understand that. You will revel in their support and love and shared excitement.

You will encounter people who care for your child in ways that restore your faith in humanity. You will cherish the teachers and therapists and caregivers who see past your child’s challenges and who truly understand her strengths. They will feel like family.

You will examine and re-examine every one of your own insecurities. You will recognize some of your child’s challenges as your own. You will get to know yourself as you get to know your child. You will look to the tools you have used to mitigate your own challenges. You will share them. You will both be better for it.

You will come to understand that there are gifts in all of this. Tolerance, compassion, understanding. Precious, life altering gifts.

You will worry about your other children. You will feel like you’re not giving them enough time. You will find the time. Yes, you will. No, really. You will. You will discover that the time that means something to them is not big. It’s not a trip to the circus. It doesn’t involve planning. It’s free. You will forget the dog and pony shows. Instead, you will find fifteen minutes before bed. You will close the door. You will sit on the floor. You’ll play Barbies with your daughter or Legos with your son. You’ll talk. You’ll listen. You’ll listen some more. You’ll start to believe they’ll be OK. And they will. You will be a better parent for all of it.

You will find the tools that you need. You will take bits and pieces of different theories and practices. You’ll talk to parents and doctors and therapists. You’ll take something from each of them. You’ll even find value in those you don’t agree with at all. Sometimes the most. From the scraps that you gather, you will start to build your child’s quilt. A little of this, a little of that, a lot of love.

You will speak hesitantly at first, but you’ll find your voice. You will come to see that no one knows your child better than you do. You will respectfully listen to the experts in each field. You will value their experience and their knowledge. But you will ultimately remember that while they are the experts in science, you are the expert in your child.

You will think you can’t handle it. You will be wrong.

This is not an easy road, but its rewards are tremendous. It’s joys are the very sweetest of life’s nectar. You will drink them in and taste and smell and feel every last drop of them.

You will be OK.

You will help your sweet girl be far better than OK. You will show her boundless love. She will know that she is accepted and cherished and celebrated for every last morsel of who she is. She will know that her Mama’s there at every turn. She will believe in herself as you believe in her. She will astound you. Over and over and over again. She will teach you far more than you teach her. She will fly.

You will be OK.

And I will be here for you. Every step of the way.

With love,
Jess

Everything in life is most fundamentally a gift.  And you
         receive it best, and you live it best, by holding it with very
         open hands.
                                                                                 - Less O'Donavan