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!