Way of the Peaceful Warrior

     The reason I started this blog was to be more intentional in my parenting.  I refer to this as warrior parenting because my daughter is at war with Cystic Fibrosis.  I needed to prepare her for the tough times ahead…giving her the skills necessary to win this battle!   So I am feeling a bit of a failure lately because my daughter seems unhappy.  She is right in the midst of some of these struggles and my warrior parenting is being tested.   I am wondering if it coming up short.   

     She has learned the physical disciplines of fighting the disease:  the day in and day out routine of medical treatments combined with the usual responsibilities of being a kid.   However it looks like we are now entering a new phase of training: the mental and emotional strengthening that will allow her to focus on living life and loving others and not focus on her current circumstances.  I am teaching her a completely different type of discipline to use when battling the mental component of CF.  When things start to seem scary and overwhelming I ask her to focus on what is good in her life.   When you are able to refocus on the good things (trust me you have something) then it becomes easier to find happiness.

     It is no surprise to me that this teaching is found in the Bible.  In Philippians 4: 6-7 God tells us how to get “peace that passes all understanding” Seriously?  I mean that info has just been sitting there for thousands of years for anyone to read?  This is what EVERYONE is looking for!   If this gets out drug dealers will be out of business, bars will sit empty, home shopping channel off the air…but surely this teaching is obscure and therefore impossible to interpret.  Let’s see...”Do not be anxious about ANYTHING but in everything by prayer and humility with thankfulness present your requests to God and the peace that passes all understanding will guard your heart”.  How can something so simple remain out of reach for so many? The key to this mystery it that little word humble.   Humility is this beautiful state of letting go of the mentality that if you don’t take care of yourself nobody will.  This is the curse of mankind….this “kill or be killed” mentality we have taken on.   That super focus on self-preservation that creates so much of the strife we have in life.  God says “trust”.  Trust that you can take the focus off yourself for a minute and it will still be okay, God’s got your back! 

     God allowed Bella to have Cystic Fibrosis but He says her life can have as much joy and fulfillment as anyone else’s.   Trusting and believing this is the only way she will be able to get through the difficulties CF is throwing at her.   Look at it this way...God teaches us our best lessons about life when we go through pain and suffering.   We also find out the best part of our character in the ways we reach out to those who are suffering.  So if you think about it, trouble is a necessary part of life.   But we spend so much time running away from it.  I know I did.  I thought life was meant to be easy and pain free.   I avoided anything that could cause pain…which resulted my living a life “less lived”.   I can attest that since having Bella, and all the pain we have gone through because of this disease, my life is more lived and more joyful. 

     I don’t know what is making Bella unhappy but I have a few guesses: her parents separated, she has a scary disease, she wonders if she is pretty, worries if she’ll be popular, will she do okay on the test, will she have to go back in the hospital, is a needle going to be involved in ANY WAY at ANY TIME.   These are probably just a few of the things running through her mind.    But whatever she is going through I need to show her that just because “bad” things are happening doesn’t mean her life is bad.   I want to teach her that, while her life is full of lots of sad and scary things, this pain is not going to prevent her from having the joyful life she desires…it might even turn out to be the shortest path to get there.

Everything Comes Down to Love

   I am a little CF crazy right now.  May is Cystic Fibrosis Awareness month AND when we have the largest CF Foundation fund raising event!    When Bella was young she didn’t realize we were going into “CF Season” but she did notice that I talked more about her having CF.  One day we were in the car and she asked why I told everyone she had CF.   I explained that we wanted more people to know about the disease so they could help us find a cure.  This was her first introduction to advocacy, something that she has been more and more involved with ever since. 

   Bella’s outgoing personality is perfect for raising awareness for CF.    She can be a VERY bright light and there is simply no ignoring her.  The first time she spoke at an event I was a little nervous of how it was going to turn out.  She is fearless and in no time charmed her way into getting her hands on the microphone during sound check.   She was singing and calling people over, it didn’t faze her at all that we were at a serious Clinical Research organization.  When it was our turn to speak I held my breath.  I had NO idea what was going to come out of her mouth.  Then, standing there with her face peeking out just over the podium she transformed into SERIOUS BELLA (I had never met her before).  She spoke from her heart in a quiet voice.   She was not silly or funny.  She simply told everyone what it was like to have CF and that she wanted a cure and thanked them for helping her find one.   She got a standing ovation!  It was the most amazing thing I had ever seen, and of course it disappeared immediately.  She went right back to her sassy self.

   Bella is obviously a natural at sharing her feelings, but for me I tend to keep my opinions more closely guarded.   People often describe my thoughts as being a “unique perspective”.   I used to wonder why I saw things so differently until I took the Myers Brigg personality test.   My “matrix” is E.N.F.P. (Extrovert, Intuitive, Feeling, and Perceptive).  If you were to think of an animal that best represents an ENFP it would be the Unicorn, a big pink polka dotted Unicorn.  We are never described as “down to earth”.   Never ask me my opinion on something like the Presidential Race.  I guarantee I will not be as upset as you would like me to be.  I don’t get that worked up about something that is going to last 4 years - 8 years tops.   An ENFP would rather just go start a new country than deal with what is going on in politics right now.

   Refreshingly, when I share my thoughts on CF parenting I find they are pretty much the same as the other CF parents.  I know that I am speaking on behalf of every other family battling Cystic Fibrosis because I am involved in the lives of other families with CF.   Being of like mindedness with others is completely new territory for me.  I can’t help but see the similarities between myself and Bella.   When we speak about this disease we are speaking about others just as much as ourselves, so we speak in a way that is bigger than just our individual personality.  She becomes serious, I become normal. 

   When I first became a part of the CF community I described it as a heart opening experience.  It has been that and so much more.  It has been a heart changing experience as well.   It is not always fun knowing the treatment plans of most of my friend’s kids.  I don’t like the feeling of worry I get when Bella goes home from the hospital but someone else stays.  This is no longer just about Bella.  This is about loving so many more people than I ever thought possible.    I feel loved by more people than I ever thought possible as well.  

   I hate that pain and suffering is so closely tied to all this love but I don’t see this going away even WHEN a cure for CF is found.  Jesus was very clear that we would have suffering and He was also clear that love was the defining part of being His followers.   Jesus is the perfect example of this because it was through His suffering that He loved.  There is no way to FEEL and not feel pain and love …so we need to stop running from one and hoping for the other.   Now this is my kind of ENFP conversation!

what is your Myers' Briggs personality matrix?  https://www.16personalities.com/

Free to be Bella

I don’t know how parents do it.  I know I AM a parent and I SHOULD know how to do it but I don’t.  My parents had it easy because I am nowhere near as smart as Bella.  Today for instance she started quoting the Constitution and telling me how she was an American Citizen and all about her rights and how women can do anything men can do.  She gave me this speech because I told her not to play in the mud.  Of course the only reason she wanted to play in the mud was because I said it was something only boys would do (in my defense at the time only two boys were doing it).  

Another time I asked her do her homework and she started crying.   Then her feelings were hurt because her dad told her that her feet were dirty.  Something was definitely up.  She was acting like an over emotional teenager except that she is only nine!! How can that be?  I thought buying the expensive organic milk with no growth hormones was supposed to keep this from happening!  Could she be hitting puberty so early?  Well, let me enlighten you.  From my exhaustive google search of 1 or 2 web sites it appears there is something called “pre” puberty.  Apparently it can happen 3-4 years before real puberty.  I was totally blindsided. 

After the news sunk in, I found myself relieved it wasn’t something worse.   My girl has been up against some big stuff in her short years and she can handle a little (or a lot) of raging hormones.  And the best thing about puberty is I don’t feel responsible for the bad behavior!  When young kids act bad it’s always the parent’s fault – too much attention, not enough nurturing, not following through with discipline or being too strict.   It’s too much to figure out.  Bella has caught on that I am confused.  When I tell her she didn’t do something I told her to do she starts crying and says “stop making me feel bad!”  It’s brilliant!  It plays right into my bad parenting fears!  On the plus side I am really proud of her people reading skills.

Surely some of our problems come from Cystic Fibrosis being added into the mix.  There are a ton of medical issues to handle but just as many mental ones.  Turns out Bella keeps a lot of stuff inside.  She doesn’t like being different and worries people will think she is weird because she has CF.  She often resorts to playing the role of the mischief-y goof ball, but in my opinion she doesn’t let people see the real her.  A few months ago God lined up some things that broke down that wall and showed her that people do care.

It started with me seeing a little video that tells kids about CF.  I sent it to the teacher and asked if they could show it.  It took the teacher about three weeks to get approval from the principal.  During that time Bella started having some pain in her lungs.  This had never happened before and she was pretty scared.  She had to stop and rest during long walks and her face would get flushed.  We had to make some decisions fast.  The week they got approval to show the video ended up being 2 days before Bella went into the hospital for her first course of IV Antibiotics since she was 18 months old.  She said that the scene in the video where the two kids are in the hospital with an IV made it easier to tell the class where she was going.  I had to watch the video again because I didn’t remember that scene.  It never occurred to me at the time it would be relevant.

I wonder how nervous she was sitting in class watching the video with her classmates.  She was facing all her fears head on.  How many people go through something like that at 9?   Afterward she said everyone got up and started writing on the white board encouraging things like “Cure CF” and “Go Bella”.  What a relief she must have felt.   I know when I picked her up from school she was beaming!  That is hardly the attitude you would expect of a child about to go into the hospital.   She was accepted and understood and that made her stronger and less afraid.  What an amazing thing to witness.  How kind of God to take her hardest moment and turn it into her biggest blessing. 

Of course the lovable goof ball came back, after all that is a part of her too.  She will probably fall back into that comfortable place again when it suits her.  But now she has another comfortable place to go to, that moment in the classroom surrounded by friends who really knew her and loved her.

Click on this link to watch the video: https://www.youtube.com/watch?v=FMAOEOmLoUE&feature=youtu.be