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. 

Fear and Loving in Apex

My family’s fight against Cystic Fibrosis began day one. Bella’s first complication was before she even left the hospital. She had a meconium ileum, which is blockage in her intestines and common in infants with CF. I had given birth in small hospital and Bella had to leave to go by late night emergency transport to Johns Hopkins where she had surgery at two days old. After surgery she stayed in the Neonatal ICU for two weeks while we sat by her crib all day and then had to go home each night. Sitting in the NICU, in the middle of my horrible experience, I couldn’t help notice that I was surrounded by people having similar horrible experiences. Many of them were going through situations worse than ours.

I had unwillingly become a member of a community I never asked to join: a widely dispersed group of people that have been forced to acknowledge that pain and suffering can happen at any moment. Sometimes, like in our situation, you realize the problem isn’t going away and this becomes your new reality. In order to keep going you have to adapt, which is just another way of saying; altering our character to fit the new circumstances. For me, it was also when two opposing outlooks on life began fighting for control: fear and compassion.

I have never been the compassionate type. My approach can best be summed up as a “get over it” attitude towards other people’s problems. In all fairness I am not that much easier on myself. I have always had a suspicion that we cause our own problems. I think that is why I have a tendency to feel a little ashamed when things go wrong. I tend to isolate myself and suffer in silence. Compassion, by comparison, is a willingness to go beside someone and share in their pain and suffering. For me to choose acceptance and compassion over fear and isolation would take a complete restructuring of how I think. So when I found myself in the midst of crisis, fear was the most natural place for me to go. Thankfully some amount of fear is beneficial; it has given me the motivation I needed to take all the necessary precautions that keep Bella healthy. It can’t be a place I stay too long though; or I’d just curl up into a ball with my hand sanitizer.

One of the most menacing threats we have encountered can be described in three words: hospital waiting rooms. We have spent quite a bit of time in the top hospital waiting rooms in the country; right alongside some of the sickest people in the world. During one of Bella’s first appointments I was sitting next to a woman whose child also had CF. Thankfully at this time I could keep Bella in a stroller with the infant car seat carrier and the sun visor pulled up (subtle I know). The woman told me her child, who was not much older than Bella, had already had pneumonia 3 times. I wish I could say that I put my arm around the woman and gave her a few minutes of encouragement right there in the waiting room. But honestly, inside my head I went into survival mode. I did the only thing I know to do when trapped with sick people, I held my breath. Turning the other direction to nonchalantly breathe (the person on the other side of me was probably there for the Pediatric Plague clinic). Maybe that was the right thing to do in light of how serious pneumonia can be for a child with CF, but I still wish there had been more than just the faintest inkling of compassion. Sometimes change doesn’t happen overnight.

I guess it appears that fear is winning this battle, but don’t forget about my secret weapon, God is in this picture too. The Bible says in Philippians 1:6 –and I’m paraphrasing-- that as a follower of Christ, I can be confident that Jesus has begun a good work in me and will make me a better person, more like Him. One of the reasons I am confident in my faith is because of this verse. The changes that have taken place within me are so obviously outside of my own ability that it has to be Him doing the changing. How He is pulling off this drastic change even further proves my lack of involvement; He is fostering a heart of compassion within me that counteracts my fear. Definitely not the way I would have gone.

Recent events have me suspicious that God is conspiring to make me a better person through connecting with others. First our family moved to Apex North Carolina, a.k.a. the CF capital of the world. I am amazed with the number of CF families that live in this area. Bella’s new kindergarten teacher lives next door to a man with CF, the owners of the local Chick-fil-A have children with CF and their restaurant has become a CF Hotspot, and I was a part of the most amazing meeting of a fellow CF Mom at my church who happens to have a daughter Bella’s age. She even convinced me to take part in Great Strides, which I had not yet gotten up the courage to join. Great Strides is organized by the CF Foundation bringing together people all across the country to raise money to find a cure for this disease. Being a part of Great Strides was a heart changing experience for me. And now just a few months later, I am writing about my life hoping people will want to take part in this experience with me and my family. Sometimes, change can happen overnight.

I have been trying to find a way out of the Pain and Suffering club ever since I was initiated back in the NICU. As a result I have focused all my attention on… my pain and suffering. What would happen if I realized that hard times are going to be there regardless of what I do, could I then focus more on living in spite of my troubles? I think that this is what Jesus was trying to say in John 16:33 “I have told you these things so that you will have peace. In this world you will have trouble, but take heart! I have overcome the world”. Is it just me or was Jesus saying “get over it” in a really Godly compassionate way? I might be wrong on that one, but for sure He doesn’t want us dwelling in the clubhouse.

Bad news has a way of stopping us in our tracks and putting our lives on hold, but the reality is that sometimes that bad news sticks around for a while. Our pain and suffering starts to define us and make us who we are. Having a child with a chronic life threatening condition is influencing who I am as a mother, and as a person. I’ve had the opportunity to indulge in some of my idiosyncrasies knowing that I am ultimately helping her stay healthy. But that was expected. How amazing is it then when the unexpected happens? Right in the middle of all that trouble I have been trying to avoid, I find a freedom from my fear and the ability to truly connect with other people. Could it be that I didn’t know what was best for me all along? Looks like things could be getting interesting!