Today...it's ok

What if we never experienced pain?

What if life worked out exactly as we planned for ourselves?

Would that always be a good thing?

I know looking back that I never would have chosen the way my life has been played out.  No one wakes up and says....hmm....  I would like to be just middle class (feeling like sometimes you border more on 'white trash')...... not  I'd like to have a sickly child......  nor I'd like to spend a lot of time at hospitals......Nobody says I'd like for some of the people I hold close in my heart to  be the ones I meet at some of the most frightening times in life.....   or I'd like to watch my child have ReLeNtLeSS SeIzUrEs.  nor do they say -I'd like to worry about whether or not my other children feel neglected.......These are NOT things I planned in life.

With that said, I don't know whether or not I would change a whole lot....at least not the lessons I've learned, not the people I've met, not the love I've felt..... - perhaps the pain, though......DEFINITELY the pain.....BUT without the pain - would I truly appreciate the little things (heck - even the big things)...would I feel as much compassion for others?  Would I appreciate that wealth doesn't come in dollar bills?  Would I truly understand the meaning of true - really, very true unconditional love?   

If things were always easy would we have reason to hope for anything more?

My ramblings may not make much sense this morning.....I'm just.... still searching.....looking for the meaning of it.....trying to understand this path upon which we've been propelled.  I know it may not be for me to fully understand now....and for now it's ok with me.  Tomorrow may be different.....or it may not.....it really doesn't matter.  What matters is that my hope still resides in Him and that right now I am eternally grateful for this life - for my husband, my boys, my family, my friends, for Team Zeta!

prayers and hope

All I've wanted to do is scream and let everyone know what a rotten day Zeta had yesterday.  If she wasn't sleeping she was seizing.  As I know all too well, that is not a great thing  - at all.  This morning seemed to start off ok, but after a couple of hours she was back at it again.  It's all very frustrating and so disheartening at times.  If you're a parent, you know that you cannot stand to feel as though there is nothing you can do for your child.

Fortunately, my focus has kindly been re-directed.

Take a look at this: (be sure to read the article and notice the date too)

 

 

On top of this, I just received an email from the Hypothalamic Hamartoma coordinator at Barrows asking to share our experiences with another family that is contemplating surgery. Again, I was reminded of how God has shown himself throughout every step of our journey.  Would I do the surgery again?  YES.  Did it help?  YES, it gave us nearly  5 months seizure free and gave us a chance to fully learn more about our little girl.  We don't know if the problems she has now are related to the suspicious inoperable area left in her brain or if it was something set into process from the HH previously or something stemming from her microcephaly or any of her other health problems. We just don't know.   For me, it used to be mostly about not knowing and wanting to know so we could fix it.  Now, it's just about trying to make her comfortable!

 

....but I've digressed far from my point.  The email made me realize that this has definitely been a process for all of us...and that although we've encountered many trying times we've always made it through......and through every step - even before Zeta was born- we were reminded that we're not alone.  We've been saved by grace and this life.....this place...this moment is just temporary.

 

Zeta is resting now.  Pray for more relief.

 

 

 

Psalm 56:8

Zeta is 2 and a half!

We had a big surprise yesterday!

Some special friends stopped by to celebrate Zeta's 2 and 1/2 birthday!

Unfortunately, she was not feeling well - and slept the whole time!

 

Regardless, the party went on and the boys had a blast!

 

 

We finished the day by making a special painting (and even painting each other!)  However, both my cameras died before I could get pictures:( 

I spent the evening counting our many blessings! I'm so thankful for Hands of Hope, the care they provide, and the purposeful memories they help us create!  

 

"Of all earthly music, that which reaches farthest into heaven
is the beating of a truly loving heart.”
Henry Ward Beecher

another week

Just another week here at the Brabham house....

At the beginning of the week we were discussing the possibility of re-starting some of Zeta's therapies because she seemed to be getting better.....but....by the end of the week her seizures had increased, she had become quite agitated and she ended up needing morphine again.  Thankfully, yesterday was a better day so I'm praying it continues.

These are the times that I begin to question and wonder about the why of it all.

I don't know why.

 and I suppose it doesn't really matter......

Sometimes I ask for answers.  Sometimes I just pray for peace.

I suppose what matters is that I understand more and more everyday what a true gift this life is.....

What matters is that I know that I could never do this alone.  That I'm surrounded by God's grace and a whole heck of a lot of people that love us and care about us!

Now, let's talk about sweetness.........

Chancelor decided that he needed to help Zeta feel better so he took out the Boo Boo Care Kit....

 

and he covered her with Boo Boo Bandages

 

and told her she would be all better!

 

I wish it were that easy....

and wouldn't it be great if we all always seeked to help others and see the positive? Don't you think it would minimize the pain, suffering, and conflict we all struggle to conquer?

 

 

Today . . .

Today I smiled, and all at once

things didn’t look so bad.

Today I shared with someone else,

a bit of hope I had.

Today I sang a little song,

and felt my heart grow light,

And walked a happy little mile,

with not a cloud in sight.

Today I worked with what I had

and longed for nothing more.

And what seemed like only weeds,

were flowers at my door.

Today I loved a little more

and complained a little less.

And in the giving of myself,

I forgot my weariness.

Unknown

 

 

 

 

 

Thankful!

Thought I would share this awesome  message from a card I received from a sweet girl last week.....I'm sure there are a lot of others out there that need this as much as I did......

They say what doesn't kill you makes you stronger.  Well, what if you didn't sign up for extra-strength training?  What if you'd rather catch a few breaks once in awhile?  Is that so much to ask?  At some point, you'd think you'd be entitled to a free pass or two:  Skip this challenge.  Avoid that crisis.  Delete those problems.  It's not that you're not strong or that you don't have what it takes to get through this.  You are, you do, and you will.  But you've built enough character already, and it's time for things to lighten up a little!I know it's not really my call, but if I were in charge of life's wheel of fortune, you'd get a free spin.  And I'd be right there, cheering you on!

~Linda Barnes

Let me tell you what made this card even more awesome for me.  Steve and I had been planning on taking the boys away on an overnight adventure some time before school started.  I've been just a little skeptical about the whole thing because I've never left Zeta - and her health status is so unpredictable.  After much thought and planning and working to ensure she would have great care while we were gone I finally decided it was okay to take the plunge... Then just a couple of days before we were supposed to leave she ended up in the hospital again.  During that admission we came to terms with some pretty life altering things for us and at times it seemed like the whole world may spin out of control - like we were living a dream - or rather a nightmare.....but in the same token we knew that although we felt out of control that God had everything in control and that the most important thing for us to do was to trust Him....it was then that we began to feel and understand a new kind of acceptance in our journey. 

I had all but forgotten about our plans for a fun night away with the boys until this card came in the mail.  It was then that I understood how important this outing would be....for the boys....for us....for me....

I'll admit it was a little difficult.  I think I called to check on Zeta 5 times before we made it to Charlotte....but once we were there I became so transfixed on the happiness of the boys that it was all definitely worth it !  (as for Zeta - I don't think she even realized we were gone- they say she slept most of the time - whew!) 

I only became really emotional in the evening when watching a little girl toddle around exploring her surroundings with unsteady steps.  It was then that I yearned most to have Zeta with me....to have my family together....to be able to do 'normal' things....

As I continued to watch this fascinated little creature I began to realize that although there were certainly things she was able to do at age 1 that my two and a half year old can't do I also  realized that there were things that were similar....like the way she looked around in wonder....the way she seemed to take in the most ordinary things as the most thrilling and most of all the way she laughed and giggled and captured and intoxicated everyone close to her with her unadulterated zest for life.  Yes, that's what my baby does and there won't ever be a day that goes by that I am not thankful for the days I have with her or my boys!

So, you know what?  I'm glad Steve and the boys and I were able to get away for those 27 hours.  I'm glad we were able to make those memories and I'm glad that I was able to come home to be reminded about what a true gift every day is.......

Where is your HOPE?

I just can't understand how anyone can not believe in Divine intervention.  Perhaps it's because I've been so focused on looking for it that I more readily accept it.  Maybe it's because of our life's journey.....  OR Maybe it's just because over the past couple of years I've learned how to listen.

The past couple of months have culminated in some pretty big decisions Steve and I have been struggling with emotionally. We ask pretty much the same questions every day.  We wonder what the future holds.  If you could look into my heart and if you could hear the conversations we've been having with all of our support staff you would fully understand the importance of what today's daily devotional means for me personally....

Three words..........Always........Never...........and.........Hope........

My HOPE resides in Him and the comfort I pray to continue to receive.

Our Daily Bread

Monday,
August 6, 2012

Always

Read: 1 Thessalonians 4:13-18

We shall always be with the Lord. Therefore comfort one another with these words. —1 Thessalonians. 4:17-18

I love the words always and never. They hold so much hope! I would like to think that I could always be happy and that life would never fail me. But reality says that I won’t always be happy and that the things I hope would never happen just might. So, as good as these words sound, they struggle to live up to their potential—unless you are thinking about the promise of Jesus’ presence.
To a group of troubled disciples who feared facing life on their own Jesus said, “I am with you always” (Matt. 28:20). The writer to the Hebrews reminds us that Jesus said, “‘I will never leave you nor forsake you.’ So we may boldly say: ‘The Lord is my helper; I will not fear’” (Heb. 13:5-6). And the apostle Paul assures believers that after death, “We shall always be with the Lord” (1 Thess. 4:17). How encouraging!
No matter how scary our journey may feel today or how hopeless our future may look, the assurance of His never-failing presence can provide us with the courage and comfort to make it through. And best of all, when this short life is over, we will always be with Him. No wonder Paul encourages us to “comfort one another with these words” (v.18). — Joe Stowell

Jesus said He’s always with us,
He will never leave our side;
Someday we’ll be in His presence
Where forever we’ll abide. —Sper

Confidence in God’s presence is our comfort.

Searching

Transition.  Acceptance.  Denial.  Hope.

Continue seeking a cure at any cost.....Make every moment bearable and more comfortable?

How do you find a cure or treatment when you can't even pin point the problem?

How do you fix what may not even really be broken?

How do you fully accept what may or may not happen....even though at some point it is really inevitable?

How can you make your heart and mind agree with what you feel is best?

If you feel like you've been running in circles and nothing is really changing then is it ok to stop running?

If you continue to look for answers and seems like sometimes it does more harm than good then it really is better to just let it be - right?

BUT....What IF?

I know this is a big jumbled mess of a post, but I can't help it.  My thoughts have been a big jumbled mess for a while too.

Thankfully, Zeta seems to be having a good day.  Yesterday was good too.  Her seizures (and the autonomic dysfunction) are controlled...for now....the thing is her latest VEEG has "not been encouraging"....she hasn't actually had any seizures since we've been here, but her brain is apparently unhappy. (for lack of a better word).  The bloodiness from her trach and belly have once spontaneously resolved again too....it's a scary and unpredictable cycle....with no answer to the repeated question of why....

Don't get me wrong...I am INFINITELY grateful for the medical care we receive.  I know that we could not ask for more.  I know, without a doubt, that these people truly care about my child.....I'm also smart enough to know that sometimes there is only so much that humans can do.  The rest is up to God. We spent the greater part of yesterday having just these type of conversations with numerous doctors and staff. I am thankful that they know Zeta well enough - and know us well enough - to give open, honest, and thoughtful opinions about Zeta's treatment.

These conversations have been tough. 

I find myself wishing I could disengage.......but I've learned that coping mechanism quit working for me some time ago.

I feel like a broken record....but please continue to pray for Zeta.  Pray for our family. Pray specifically for our decisions to be led by Zeta's needs and not our own.  Pray for her home care team and her team here also.  Pray for our boys, our parents, and grandparents.  Your care and support are  beyond measure.

The truth is that our finest moments are most likely to occur when we are feeling deeply uncomfortable, unhappy, or unfulfilled. For it is only in such moments, propelled by our discomfort, that we are likely to step out of our ruts and start searching for different ways or truer answers.

M. Scott Speck