Blind Spot

I once made the mistake of praying for patience prior to looking up examples in the bible of how God teaches patience (let me give you a hint….the word patience is sometimes translated at LONGSUFFERING).  Long story short God doesn’t allow take backs.    After that I have been way more careful.   If I get whiff that the message at church Sunday is entitled “How to keep your faith when you get laid off” I am not going to church that week.    But last week I didn’t have my guard up because the message was called “Friends”.  Who doesn’t love friends?  Well apparently God had found a work-around to my genius method of avoiding growing up.  

Our verse was Proverbs 15: 11-12, “timely advice is lovely, like golden apples in a silver basket. To one who listens, valid criticism is like a gold earring or other gold jewelry”.    Clearly God was strongly suggesting we listen to criticism because it was just as valuable as precious jewels.  I got a slight twinge of “oh no, God is trying to teach me something”.    The next day, leaving no room for misinterpretation in God’s timing, I was confronted with just this situation.  How would I respond?   

If you guess that this issue centers on my daughter and my warrior parenting skills you are correct.  There are many words I use to describe my daughter: “high energy, bold, strong willed, tenacious, even a bit sassy.   Mostly these are seen as positive traits; she is resilient and adaptive and has a spirit that is unbreakable.  But this can also be translated as “fully cocked and ready to go off at any time”.     These full-on freak-outs have been mostly reserved for small family occasions and holidays but not today!   At a friend’s house, in a full display of “shock and horror”, we all witnessed one of Bella’s high drama performances in emotional overload.   I was left speechless and unfortunately, mostly action-less.    My friends were forced to end the night and I was devastated.  Couldn’t they accept Bella for who she was?    It wasn’t until after some honest conversation that I had to admit that I might not be seeing the situation clearly.

Because of this criticism, I was able to remove some really thick blinders allowing me to see these outbreaks for what they were.   I was allowing my child to explode on people and I didn’t assume the authority to control these situations.    I wasn’t blind to what Bella was doing (trust me there is no missing those fireworks).  But I was blind to why it was happening.   It wasn’t until I heard honest wisdom from a completely different perspective that I was able to get to the root of the problem.   No surprise here, the problem was me, not Bella. 

Now a true warrior parent (especially of the complicated medical variety) can come up with an action plan pretty quick.  I set boundaries, consequences, and a came up with a long list of Parenting 101 stuff to set into motion.     But these systems only last as long as they are maintained.  I had to be the one to maintain them.  This is not really one of my spiritual gifts.  In order for me to really get behind this program I had tackle my complacency.   I had to know why I was so bad and being the bad guy.    I am really good at understanding and acceptance but we don’t need any of that right now.  I had to be tough.  What was holding me back?

Cutting through the excuses I had to tackle the Sick Kid defense head on.  When you focus so much on your child’s health, a few things are bound to slip through the cracks.  But my hope in a long life for Bella had to correspond with my behavior.  We had to leave those excuses in the past and move from crisis mode to thriving mode.  It meant not letting me or Bella blame her disease for her bad behavior.  There is no doubt there will be days when she is scared, sad or mad because of Cystic Fibrosis, but we can come up with healthier ways of coping.  For instance my go-to emotional release has always been turning up the music real loud and singing at the top of my lungs.

The biggest blind spot of all was in my parenting philosophy.  I was essentially giving her a free pass on grand emotional displays.  I had to reach pretty far back to work out why.  Having a conversation with my mom helped.  Apparently, there are some similarities between my childhood behavior and my daughters (shocker!!)   However, I can tell you that my mom had ZERO blind spot and ZERO tolerance for my shenanigans.  I was “parented” effortlessly into at least being well behaved in the proper situations.   I don’t think I appreciated my mother’s skills until now and perhaps I even resented them a teeny bit.   By resenting my mother’s control all these years (love you mom!!)  I overcompensated without realizing it; giving Bella the freedom to emote all over the place in a way I never could. 

Although this experience wasn’t without pain, it feels wonderful to have the blind spot removed!   The greatest gift I can give my daughter is to show her how to express all the crazy emotions in appropriate ways and environments.   I want to ensure she doesn’t feel her emotions are wrong, just that she has to control and at times contain them.   I have awesome visions of her at a business function years from now….getting frustrated at someone and having to run outside to explode and then calmly come back in.  And she will thank her mom -- but still forget to call me and tell me that.  I can’t wait to see what Bella overcompensates with her children.  They will probably get to eat salad for dinner and never have to go to the doctor! 

All this makes me curious.  Do we all have a childhood versions of ourselves controlling a part of our parenting, safely hidden behind blind spots?

Hidden Happiness

Have you ever forgotten that you were happy?  I have and what a wonderful feeling it is to be down in the dumps and suddenly remember “wow my life is actually pretty good”!  It’s like waking from a bad dream.  My peace returns along with my much needed HOPE, oh how I miss that when it’s gone.   Just for fun check whether you are really happy and just forget.  Here is a test:  If you are currently unhappy stop and ask yourself why.    If your reason is stupid and could be fixed with just not caring about that "thing" anymore, then you are really happy!   Okay I know it’s not always that simple but it’s worth a try.

I know a lot of people will reduce this all to “positive thinking” but I don’t agree.  I mean, if that is all you got, go ahead be as positive as possible.  But I need God.  I know at this point people say, “Ok here is where she says she prayed and God made it all better”.  Not even close.  This is what really happened…I prayed, and prayed, and begged, and pouted, got mad, renounced my faith (only for about 3 seconds), then finally realized what a complete idiot I was.  Of course when I stopped begging God to “do something” I realized He already had.  I always had the peace, it wasn’t lost it was just ignored.   It was so much easier to just ask God to zap away my problems than realize He wanted me to have joy in spite of them.  

         I think of this process as a shift in perception which runs a lot deeper than just positive thinking.  Haven’t we have all given ourselves a positive pep talk that changed nothing?  But remember those times when you just KNEW something was going to be successful and it was.  That is a altering of our perception that shifts our reality.  The bible talks about “transforming your mind” through reading scripture, and no doubt that is a big part of keeping things in the right perspective.   How can you have a bad day when you read over and over that you are known and loved by the creator of the world?

         Every single up and down and lesson I learn I try to pass along to Bella.   How wonderful to think that she could avoid at least a few of my mistakes!    I have witnessed this principle of perception play out many times in her life.  Some mornings I can tell within 2 minutes if she is going to have a good day or a bad day.   Is she happy go lucky or looking for a fight?  So many times I see her on track to have a horrible day but how do you teach a child how to turn that around?    I am sure many times I just make it worse by getting frustrated and angry.   After my recent experience when I see her going down the bad mood road I will try finding that little something that jogs her memory and remind her she is really happy.       

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

Trust Me, It Makes Sense in the End

It’s been almost 5 years since my last blog post; which is completely normal right?  Several times since then I started writing again but could never finish because, for me, the writing process is painful.   Not in a “my memories are traumatic” kind of way but in an “ouch this hurts my brain” kind of way.   I have this tangled up ball of string in my head and somehow I have to get something to come out that makes sense and is in paragraph form.  The past 5 years have been hard enough without me inflicting that kind of torture on myself. 

Things have certainly changed in my life.  While I think I have been wildly successful raising Bella, I cannot say I have had the same level of success in my marriage.   Let’s just say the blog tag line should now read “Warrior Single-Parenting of a child with CF”.   Being a CF Mom prepared me for anything though.  I have lots of experience clinging to God with both hands and it came in very handy these last few years.  I can now report that when you stay in that position for an extended period of time you are going have to let go of a lot of things you thought were important.   There is just no way to hold onto anything while you have both hands death gripped on Jesus!

If there is one thing I regret is how long it took me to stop fighting God and just let things fall away.  I wasted a lot of time attempting to keep my world together by a sheer force of MY will.   When that last bastion of self --my pride -- crumbled I was finally able to see God’s will.   His plan turned out to be fabulous by the way, as if there would be any doubt which one of us was right.  Thankfully God promises that He makes ALL things work for good; because, at the end of all the destruction I ended up gaining a lot more space to live in (figuratively speaking, my house is actually smaller)  By space I mean where before I felt completely burdened and stressed beyond my ability to handle; I now have time for all the things that truly matter.   I have moments of peace I have never had before and it makes it all worth it.  

For some reason I also received a bonus spin on the wheel of Trials and Tribulations and boy did I hit the jackpot!   I have battled fear and anxiety for my entire life. This all changed when I was able to let go of my pride.  Apparently fear needs to have it's buddy pride around or it doesn’t work so well.   I have much less fear because I have much less ME that I am maintaining.  It is so much work to pretend to have your stuff together.  Many times I start to do something but stop out of fear of how it will be received. Now my only pride comes from the fact that God made me and loves me, hot mess and all.   Life is so much more fun this way. 

So as I see it, I have total freedom to be a really inconsistent blogger who wants to overshare about her life so maybe someone laughs or gets a little dose of hope.   I may be going out on a limb here but I am probably not the only warrior single-parent out there.   Maybe right now you are holding fast to your idea of life and totally ignoring what God has to say.  Trust me, He is going to be right in the end so just listen and get it over with.

As a side note it is amusing to me that as the world gets crazier and crazier, I am finding peace.  If you read my story you could possible conclude I am a bit of a wacko, and that would be fair.  I certainly would never have thought 10 years ago that when things went apocalyptic I WOULDN’T be the one stocking up on canned goods and collecting rain water.  If that isn’t a testimony to the power of Jesus I don’t know what is.