Hmmm...

Feeling isn’t a bad thing.

In dealing with my recent anxiety I’ve picked up some good advice.  While talking with a trusted counselor she pointed out that I answered most every question she asked with, “I think….” In the context of our conversation it was like a bolt of lightning struck.  The point she was leading me to was the fact that although I’m always ‘thinking’ about what our next step should be…. or ‘thinking’ about this or that- I’ve kind of lost touch with what I’m FEELING…..(and honestly sometimes afraid to admit what I’m feeling).

I know it’s very true.  I have not so unique ability to turn my feelings off.  In order to cope with some of the situations we’ve been dealt  ---I just tune out.  I stand back and watch myself acting out the motions…. I do what needs to be done to make it through the moment…the day…the week.   In fact, I quit feeling.  At some point that all comes back to haunt me and I eventually HAVE to FEEL.  There are so many more revelations I’ve found in (my less than ordinary) counseling but I won’t dwell on them here. 

What I want to share is that I’ve found support from people that I never even imagined.  I’ve found that I’m definitely not the only one….

Anxiety stems from fear.  I need to be aware of  where the fear is actually coming from, feel it, and deal with it………How?  Lots of trust and faith in a higher authority is all I can say!

A huge part of my fear comes from not being able to ‘fix’ everything……If I read enough; search enough; find the best doctors; befriend the best nurses; seek the most therapies; if I’m nice enough; smile enough; all-together enough;  thoughtful enough; if I pray enough; bargain, plead, and cry enough then it will all be ok…..  Somehow everything will magically fall into place.  Now, I know that is not how life works, but still…somewhere in my subconscious it’s all that drives me.  It’s who I am….and if I can’t be the peace-maker….the one who fixes things…..then who am I, really? That’s a huge part of the fear. 

That….and fear of the unknown……

When I think about Zeta and the unknown it leads me to think about every single important part of my life and the unknown…..my boys….my marriage…..Stevie..…my parents…every single thing that is important.  It makes me realize that nothing in our earthly life is promised.  At times, that can be a very overwhelming feeling.  At other times it solidifies the appreciation I have for accepting the choice of salvation and all the Heavenly promises that abound. 

I think too much.

I’ve spent the past few weeks getting back to feeling….and it’s not so bad. 

We’ve accepted the services of Hands of Hope.    The layer of extra support from Odessa, Mollie, and Tabitha have already enveloped us.  We still have the extraordinary support from Lavonya( Zeta’s home nurse)…..our families …..and all of the prayers that each of you surround us with….

I still believe that circumstances are greatly impacted by attitude and choice so I will continue to believe things will never be as bad as they could be…. and I will continue to put on my happy face to the best of my ability, but I will allow myself to feel more….and I’ll continue to try to live each moment with my family and my children as if they were numbered…..I will try not to wish for the magical fix because I know there’s already a Plan in place that is Divine………

Zeta had some minor procedures on Friday.  We finally had a port placed.  This should provide tremendous relief for her tired veins!  They took another look at her airway and did more injections to her salivary glands.  No real new news.  Surgery was a breeze and they even let us come home the same day (that’s a first)! 

Saturday evening Zeta was starting to feel a little under the weather.  Well….the past few days have been eventful to say the least, but we’re dealing.  Seizures have continued to be very troublesome and we’ve dealt with some respiratory and feeding issues.  Thankfully, our plans of staying out the hospital with extra support at home are paying off so far!  Your continued prayers and support are truly appreciated!

We’re so very thankful for all the people that have been placed in our lives (especially the past few years).  So if by some chance I have failed to ever personally thank you for your part (however big or small)  please, please know how grateful I am that you’ve been a part of my life!  I’m mindful every day of the ways that I am blessed!

And now, Lord, what do I wait for and expect? My hope and expectation are in You. Psalm 39: 7

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!