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