Tuesday, November 19, 2013

Three Pieces of Advice to Caregivers~How I, Myself, Get Through

This is kind of a landmark entry for me!  My 14th day in a row of writing.  For two weeks I have made the time to sit down and write daily; I never would have done that except for WEGO Health's National Health Blog Post Month.  Because today is Tuesday, they direct us to write a "Top Three" on some topic.  Today, I get to give my top three pieces of advice to other caregivers.

The first piece of advice I'd like to give may sound cliché, but it's 100% true:  Count your Blessings.  What I mean by that is this; it's not that you need to be more grateful, it's that, literally, negative and positive thoughts cannot rule your brain together.  I call that lying voice, the negative voice, the voice of doubt and fear; my GREEN MONSTER voice.  I picture him somewhere up there in a corner of my brain, just jabbering away about all the doubts and insecurities in my life.  He says things like:  "Tammie, things are going too smoothly, this next ultra-sound for Evie won't be clear."  and "Remember, her blood pressure's too high, that's gotta mean something's wrong with her kidney."  or "What if you have to go back to working full time and you can't be home with her on summers and after school anymore?" 

Blah, blah, blah, blah, blah...Green Monster gets my heart racing and my mind running.  I start to feel panic creep in.  When this happens, I go back into my brain, (and even sometimes write out), all of the amazing miracles that have happened along the way.  Oil and gas bills with credit on them rather than balances when Evie had cancer; the Children's Oncology Group meeting at exactly the time she was diagnosed, so her doctors could call and consult with some of the greatest minds in children's cancer ~ all meeting together; me being unable to contact Jeff the day Evie was diagnosed because he was out of cell range, but that delayed us checking into the hospital, thereby delaying her surgery long enough to find out that she wouldn't need to have her whole kidney removed.    When I focus on these things and look at the enormous "miracles" inside of them, I really can't justify feeling scared about our future.

Evie a few weeks into treatment for Wilms Tumor
My second piece of advice for caregivers is to create a lot of "logs" and to always have a notebook and pen to write things down.  Often I found that I couldn't remember the easiest thing because of sleep deprivation, and all the things jumbled in my head.  We had (and still have) so many medications, that it was hard to remember when and which ones to give to Evie.  A medication journal will help you remember that you gave the medication and at what time.  If your child has constipation problems, start charting bowel movements!  It's not glamorous, but it helps you know when you need to ramp up the miralax or lactulose.  If your child vomits after vincristine and the doctors are telling you it shouldn't make them sick; start charting when it happens.  I figured out that Evie vomited exactly 5 hours after chemo.  That helped our GP determine that it was a bowel spasm that was making her vomit, not nausea from the chemo.  We started to lube Evie up with lactulose on her chemo days and she never got sick again from vincristine.

Writing things down doesn't mean your stupid or inept, it means you are thorough, conscientious, and recognize that you're in a place where there is so much to process that you may need to write it down now and process it later.

My third, and final piece of advice for caregivers is to get into God's word everyday.  It may not mean reading the Bible or doing a Bible study (I would have never been able to do that when Evie was her sickest), but it could mean getting a good daily devotional.  One devotional I've read and always been moved by is My Utmost for His Highest by Oswald Chambers.    Uf-dah!  The passages that are highlighted,and then the reflections that Chambers applies to the passages would overwhelm me with peace and give me a chance to marvel at God's goodness in the midst of our own little "hell on earth." 

An example of this if the passage for September 30th...Evie was diagnosed with cancer around the 23rd of September, so right around the 30th she was having her surgery to place her port and begin chemotherapy.  Chambers, on September 30th write about The Commission of the Call:  "Now I rejoice in my sufferings for your sake, and in my flesh I am filling up what is lacking in Christ's afflictions for the sake of his body, that is, the church..." Colossians 1:24  This was Paul writing to the church at Colossae.  Chambers, in My Utmost, says,

"This call has nothing to do with personal sanctification, but with being made broken bread and poured-out wine.  God can never make us wine if we object to the fingers He uses to crush us with...if ever we are going to be made into wine, we will have to be crushed; you cannot drink grapes." 
Believe it or not, the thought that we were being crushed so that we could be made into wine was quite comforting to me.  I began to really understand that the pain and fear we were experiencing was only for a season, and that we were being transformed to be a little bit more like Jesus.  That's what kept me going, and continues to propel me forward today.
So, there you have it, the best pieces of advice I have to give to all those amazing caregivers out there who may be feeling broken hearted and defeated today.  Please know that you have a Lord, a King, a High Priest, who has experienced pain, suffered death, and conquered death so that we may know glory in Heaven when our time comes.  God is crazy about us, and loves us too much to leave us as the sinful, selfish creatures we can be.  We may feel crushed right now, but soon we'll be transformed just as Jesus was. 

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