Finding courage....

Do not be terrified: do not be discouraged, for the Lord your God will be with you wherever you go. Joshua 1:9

Want to know something about me?  I don’t actually talk about my feelings too much.  Really, I can write fairly freely all day, but I certainly don’t like talking about the way I feel.  I suppose part of it is because I feel I get too emotional if I’m upset or if I’m criticized….. and the other part may be because I don’t like asking for help or causing conflict or worrying anyone else with my trivial ‘stuff’.  I guess I assume that if someone wants to know how I feel they can read – or not read- my posts.  If I’m talking about what I feel then most people won’t just politely walk away if they’re bored or uncomfortable…….you know what I mean….I don’t want to make anyone feel awkward….

AND>>>

I don’t like feeling vulnerable……………

Since some of my recent posts ,one of Zeta’s therapists told me about Brene’ Brown. (Google her and listen to some of her talks on vulnerability)…….No one likes feeling vulnerable……..For instance, have you ever felt like if anyone knew the “true” you they would be disappointed?....but what I’ve always said is that I feel empowered through my posts.  Like I’m purging and sharing some of my innermost thoughts, fears, and accomplishments…(don’t get too excited, believe it or not, I don’t really share my every  thought or fear or accomplishment.) What I’ve also found is that through my posts people are able to minister to me and give me encouragement.  I started blogging because I wanted to help other parents in similar situations know that someone else ‘gets’ it – that they’re not alone.  What I’ve found is that in being true to myself (and to you the reader) I’ve learned so much more than I would have ever imagined.

I guess….maybe….I sometimes wish we could all be more vulnerable…..I think we could learn a lot from each other……but oh, how difficult………

Some say that with vulnerability comes courage………funny, it doesn’t always feel that way, does it? 

It doesn’t take a rocket scientist to figure out that maybe I’ve been dealing with some discouraging feelings as of late.  With Zeta, I’ve often felt as if I’M> ON> A> MISSION……..

Does this sound familiar to any of you????

We may have very different reasons for our ‘research’ but when I saw this I had to laugh- because it has so much truth to it.  I feel as though I could have written quite a few doctorate level research papers the past couple of years with all the medical research I relentlessly throw myself into…….Well, if you’ve read some of my most recent posts you may realize that I’m constantly questioning all of the research .... and the methods ....and all the madness.  I wonder if the decisions we make are the right ones.  I wonder if we always choose the way we’re supposed to or just the way our hearts tell us to go.  I wonder if the way of our hearts matches God’s plans or if we script our own agendas.  I get discouraged.  Not always because of the path set before me, but because I don’t know the right answer and I don’t know if I’m doing things the right way…..I feel vulnerable……..and discouraged………and yes, sometimes shameful.......

Whats ironic is that I didn’t really realize that’s what I was feeling until a few friends (unbeknown to each other) kindly pointed it out to me…….

One went so far as to send a page out of her daily devotional with the following highlighted:

Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go.  Joshua 1:9  Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying, ‘I will try again tomorrow.’ We can turn to God for the courage to try again tomorrow. 

Even for those who trust God, sometimes just showing up is a victory.

Then it hit me like a ton of bricks………..part of the reason I’ve felt discouraged is because I feel if I’m not reading the latest research or contemplating the next test or remedy or the newest treatment  then I’m not doing anything to help her……. When, in reality that’s not the case at all………sometimes it’s just good to sit still and let God be God…..and it doesn’t hurt to be a little vulnerable sometimes too……..

I’m never going to know all the answers…..I won’t ever fix it all…………but it’s never been mine alone…….

Zeta has continued to have a difficult month.  We’re home, which is great…..and she’s definitely not as sick as she ‘can’ be…….but it’s still discouraging when she regresses. It’s disheartening seeing her back on the ventilator every day and missing out on therapy and a lot of family time, too.  (There again, I need to keep repeating that verse, do not be terrified....do not be discouraged......God..be with you.... over and over again in my head.)

On a happy note, I’d like to share about a  recent project Steven did for school.  He had to do a power point presentation on a famous person.  He chose his sister.  He and Mrs. Bolen, his teacher, worked secretly to surprise me.  I’m not sure that she realizes how much it meant to Steven ( and to us) to work on this project.  She could have told him that Zeta wasn’t famous and he probably would have obediently chosen another person, but she didn’t.   I sure hope  he realizes that the joy I felt for his project was not because he chose his sister, but more importantly because it shows the pride and compassion  he feels.  It shows the mature understanding he holds and at the same time it means a type of vulnerability and growth that a lot of 10 year olds have not yet encountered.  I am humbled by his understanding and his love for his brother and sister (and his ability not to get discouraged) every day!

HOPE

So, I’ve been sitting on this awhile and I think keeping it in makes me a little jittery.  Read the email I’ve copied and pasted below and what I’m talking about will begin to make sense. (I”ll apologize in advance for how long this post is going to be, but I have so much to tell!)

From: Angel Brabham <angelbrabham@yahoo.com>

 To:

Sent: Tuesday, April 10, 2012 9:57 PM

 Subject: NEVER LOSE HOPE!

If you're receiving this email it is either because you are very close to our family or you are closely involved in Zeta's care.  It is with very conflicted emotions that I write it.  Now, erase everything you "know" about Hospice care and let me tell you what it will hopefully mean for our family. I'm sure all of you know that our desire has always been to remain out of the hospital as much as possible.  Through Hands of Hope, a subsidiary of SC Hospice, we hope to better attain this goal.  This does NOT mean that we have given up hope.  It does NOT mean that anyone has given us an 'expiration' date.  It does NOT mean that we will not still strive to give Zeta the very best life possible.  Trust me, we still believe that flying across the country for surgery (and the benefits Zeta has reaped) was a very good decision.  We also believe that the trach, vent, feeding tube, are worth every bit of any worry or concern.  When Zeta smiles it makes everything worth it!  We believe that the medical community has mostly embraced and accepted our desire to seek what we feel is best for Zeta. In pediatric hospice/palliative care you are allowed the benefit of concurrent care - meaning we can still seek aggressive treatment or hospitalization when desired or necessary.  What this means is that we are seeking additional help in her care and, hopefully, we will be able to handle more of her care at home.  It means that we believe Zeta is most comfortable at home and that our family will be better able to function as a unit the more that we are able to keep her at home.  It is my desire that no one misinterpret our interest in Hands of Hope as giving up on Zeta, just as we expect that you will not give up either.  I've always been concerned about the fine line of doing what is best for Zeta and doing something just to say that we're doing something.....Trust me, I put a lot of thought into this daily.  Sometimes it's hard for people to understand that Zeta doesn't do normal things.... because she isn't in the hospital people assume she can carry on a somewhat typical life.  Unfortunately, Zeta has a very sheltered and isolated life.  Many times, just moving to a different room in our house greatly stresses her.  If the temperature is very much above 75 she starts getting sick.....and the list goes on....I can count on both hands how many times she has been in church, to a store or other public place- besides a hospital or therapy, or doctor's office.  When Zeta is doing very well we may able to do a little more, but then we worry about how our actions and decisions may affect her. So we mostly stick to therapy, catching up on immunizations, and regular doctor's visits when she is well enough.  Admittedly, I have very different dreams for Zeta than for Steven and Chancelor - BUT in many ways my dreams are the same.  I wish for my children to be happy, to know they are loved, and to be free of pain. Please pray for us as we take the next step in making decisions in Zeta's care and please, please NEVER LOSE HOPE! We've already discussed our hopes and desires with our immediate family and her pediatrician, and we wish to include you all in our thoughts too - if you are involved in Zeta's care Hands of Hope may be contacting you too.  Most of you know that I'm very public about much of our life with Zeta, but there are still some things that are difficult to put out there and sometimes I have to just take baby steps.......so if you have questions just ask.  I just want to make sure that people understand that our goals for Zeta have not changed......maybe just some of the methods!

Much love, care, and respect!

Angel

Stevie and I continuously talk about how we can make things better for Zeta, for Steven, for Chancelor, and for our family……..we’ve discussed more palliative care in the home setting for quite a while.  There are a lot of things that we do at home to prevent hospitalization, but there are some things that we just can’t do at home.  We really want that to change.  The idea of hospice being involved in anyone’s care can produce feelings of fear…..but what we’ve found in numerous discussions with various sources is that it is very possible that it could be of great benefit for Zeta – and for our family.  The difference with palliative care in the pediatric setting is that we can still seek CURATIVE treatment and aggressive therapy at the same time. Ideally, it is exactly what we are seeking….to be able to continue to look for ways to help Zeta while keeping her comfortable at home as much as possible and protecting our family unit.

Now, we haven’t ‘officially’ completed any paper work with Hands of Hope and we are still having plenty of discussion with various members of our care team….but – it feels as though we have pretty much made our decision in our minds……..it’s just a matter of crossing all the t’s and dotting all the i’s.

I found that since we’ve started the frank discussions with Zeta’s care team, our family, and close friends that two things are happening. 1) I think I’ve entered another stage of grief and acceptance;  2)I’m very aware of God’s hand in not only this, but every aspect of my life……

There are a lot of emotions that I like to keep to myself – I even have some rules:

·        I don’t cry in front of doctors.  Of course it happens on occasion, but trust me you gain a lot more credibility if you’re not the nutso type that they can’t communicate with…..

·        I don’t get upset in front of the people that I need for support…..if I’m upset and can’t handle it how do I expect them to be able to keep it together for me?

·        If I can play every possible ‘bad case’ scenario out in my hand then I won’t ever be surprised when the unexpected happens…..

Now, let me tell you, sometimes this crap just goes all out the door (‘crap’ used here for lack of a better word lol)……besides the fact that when I actually read some of it in print it seems just a little nonsensical……….

What I’ve rediscovered in the past few weeks is that it’s ok to show emotion in front of a doctor – after all they are human too…..and it’s ok to let your support people actually support you instead of always trying to be the one who has it all together…..and the last one?  Well, why waste all that time worrying about the what ifs?

Finally, let me tell you about this little thing that has been happening all throughout my recent downheartedness.  My friend recently brought me a framed print that she picked up for me several months ago and had forgotten about.  It’s my favorite go-to scripture, Jeremiah 29:11.  Above the verse it reads, HOPE.   Want to know what’s funny?  We’ve been having these discussions about how that word (HOPE) keeps popping up almost like Someone trying to send me a subliminal (or maybe not so subliminal) message……

1) I was once very involved in helping create a mentor program I aptly named Project HOPE 2) The foundation that helped us find assistance in dealing with Zeta’s brain tumor is called HOPE for Hypothalamic Hamartoma 3)The framed verse my friend gave me with the big bold word HOPE on top 4)  The email I copied and pasted above with the subject titled, NEVER LOSE HOPE 5) Hands of Hope 6) a facebook post (from the photographer that created pictures of our family that gives me feelings that I can't articulate) – “I went to this photo shoot with the Brabham's thinking that I was offering the family memories in the form of pictures. BOY WAS I WRONG, the memories made that day were my own. I am in awe of the love and hope that this family shares, and of course you can not help but to be touched when you look into Zeta's eyes….” Did you see the word hope in there???  These aren’t the only instances, but do you get the picture??

When I looked at the pictures, I realized that she is exactly right – our family eats, drinks, and breathes LOVE and HOPE!!  I think this is why I choose to share such intimate parts of our lives.  The whole purpose of my blog was to create and encourage hope in others…………but I hope that I’m able to show that we do have struggles and challenges – and we face them, TOGETHER with HOPE and LOVE ………the kind of HOPE and LOVE that can only come from GOD above!

Be still, I am with you (and I have plans for you too).

I keep searching for the word that describes what I’ve been feeling.

Fear? Pity? Anger? Not exactly……..restless???..........then I feel that calm assurance of someone telling me, “Be still, I am with you.”

All I can tell you is that I’m feeling some pretty big emotions all wrapped up into one.

When I close my eyes I see a limp, lifeless baby in my arms. I haven’t been able to get that image out of my eyes yet. When I sleep the nightmares come.

Then I start thinking……

about death……..

death is natural right?..........Why then, has it felt so UN-natural every time I’ve seen my baby cheat death…..and why does it feel as though she has been fighting death so many days of her life? There is a reason.  There has to be a reason that it keeps happening.  I WISH I fully understood it.  I understand the good that has come of our whole experience, but that doesn’t erase my questions.  That doesn’t cancel our pain.

I’ve been thinking about a few times in her life that really stand out.  I still don’t recall every instance of what happened during those times.  I see flashes of memories.  I feel the intense emotions wrapped in a single second.  I see the chaplain coming to speak to me, and think – this is strange…... I watch myself – like an out of body experience…..just the way I felt this past week.

I keep saying, “I don’t want to go there again.  I don’t want her life – our life- to be that way again.” I find myself asking ‘why’ again.

I try not to let myself ‘go there’ too much……I do believe it would breed insanity, but for now it keeps creeping in…….

Then I remember all that we have overcome.  I think about the lessons learned.  I look at how God has healed, yet I still worry that maybe his answer is not the one I want or expect. 

I think about Job. “Therefore I will not keep silent; I will speak out in the anguish of my spirit, I will complain in the bitterness of my soul….Have you made me your target?  Have I become a burden to you?” God gave us the ability to grieve.  The ability to question and the ability to become angry or feel less than hopeful.   However, just as God proved himself to Job he has proven Himself to me – over and over.  So I know that I can trust in whatever happens.  “You are not your own.  You were bought at a price.” 1 Corinthians 6:19-20  “This is the way; walk in it.” Isaiah 30:20-21.  Basically, God has shown me over and over that He is in control and I have to trust that.

If you don’t know Him follow the link and see the price that was paid for me and why I believe……… (Warning: it is a graphic depiction of the Crucifixion…yet one that needs to be told)

 http://www.youtube.com/watch?v=Faz9MTs8JOY&feature=related

Oh, and by the way, as I picked up a book to look for some scripture you could only guess what I saw first......

Enough said!!

Been a little rough this week...

We could use a little less drama right about now.....

2 EMS calls in less than a week???? (They've been very good to us by the way!)

I'm just thankful my sweet baby is here and resting!

I'm not going to give a play by play of what happened this morning.  I've told the story more times than I care to count and it's like every time I tell it I'm having some sort of flashback.  Like I'm watching everything in slow motion......it makes my head spin....and my heart hurt.

Zeta had some respiratory and/or seizure issues last night.  This morning she turned blue and passed out in my arms while nothing I could do seemed to help.......

.....but finally....FINALLY.....something worked and she got through it-

Just another day and another reason to count all of our very many blessings.

She has pneumonia and of course some of her labs are all over the place.  She has done well since her episode this morning.  Mainly, she has really just been very out of it.....but that's much better than how she was this morning.

I don't know what I would ever do without my family.  I just call and say, "I need help" and they are there.

Today has been a long day.

So far, we're just adding new medications to the ever-growing list and staying in for observation.  Please keep our family in your prayers.

"There are people all over the world in every country, in every house and hut and slum and park bench and apartment on every road and street all over this earth who are in despair because they don' know hope or love or joy or healing or freedom. THAT is a problem....my problems are minor."