Never say “Never”…

I asked a friend of mine, Sarah Jane, to write down her story for you to read.  This is the story of what happened as she planned her life only to discover that God had much different things in store.  She is a pastor’s wife and the mother of two precious girls who battle CF (Cystic fibrosis).

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To understand my story, I feel like you may need a little background.  I’m the girl God likes to laugh at – seriously.  I like to tell Him “never” a lot and He just chuckles and then proceeds to visually illustrate in my life that my “never” is about to happen because it’s His best for me.

I am the one who had her whole life plan ready to go after college – complete with check boxes – and God just laughed and rolled out another plan.  Not that His plans are bad…they’re just different.  And different throws my little list of check boxes for a loop.

I was a driven law school student when God asked me to marry a pastor.  I’m sorry….WHAT?!  I don’t think I heard You right.  I’ve got ambition and drive and I want to do great things for Your Kingdom!  I can’t be married…much less to a pastor!  That’s way too much responsibility.  Don’t you have to be good and read your Bible an hour each day to be a pastor’s wife and have a casserole always ready to go and like working in the children’s ministry?!

But I did marry that pastor.  I listened to the still, small (well not really small) voice of my mother wisely counseling me that Tim was the best thing that would ever happen to me.  And she was right.

But I was certainly NOT having children.  I’m not exactly maternal.  I know what to do with children and have no problem being around them, but I was wonderfully aware of the fact that children, if you raise them well, require sacrifice and time and interrupted sleep.  I was not a big fan of any of those.  And so naturally, God gave us children.

Well, I’m certainly going to keep pursuing my career.  I have to show these kids of ours that you can juggle career and family and still make a name for yourself in your chosen field.  Until about 6 months into my first pregnancy when a nagging thought kept creeping in, “I think I’m supposed to stay home with this baby.”  What?!  I can’t be a stay-at-home mom?  Don’t you have to drive a minivan and wear yoga pants (well, that part I was a bit excited about) and be crafty?

But because He said to, I did quit my job and stayed home.  Well, at least the baby’s healthy and I’ve read all the parenting manuals and I know exactly what to expect with this new child.  But 14 days after our first daughter was born, the doctor called to say that she had cystic fibrosis, a rare genetic disease that affects the lungs and digestive system.  Cystic fibrosis (or CF) is an issue with the cell’s ability to move water and salt in and out of the cell properly.  Because of this inability, thick, sticky mucus builds up throughout the body making chronic lung infections and digestive problems a regular occurrence.  The average life span for an individual with CF is in the late 30s.  And the daily care regimen for someone with CF can be quite daunting.

And God gave us 2 kids with CF.  So staying at home with these two infection-prone little girls was the best thing for them in the beginning, but I reasoned I could head back to work when they started kindergarten.  And then the nagging thought crept in, “I think I’m supposed to homeschool our kids.”  WHAT?!  Now this is just unreasonable!  Aren’t homeschoolers weird and anti-social and wear long jean skirts and have 15 children and never let their kids out of the house?!  I can’t do that!

So naturally, that’s exactly what God asked me to do.  (I’m hoping you can see a pattern forming in my life by now, because it took me long enough to notice.)

Well, if we have to homeschool, our kids are going to be super involved in everything and I’m going to dedicate so much time to helping make their education stellar!  We’ll do unit studies every day and make a paper mache of the earth and learn multiplication tables at 6 years old and translate Latin passages each week.  And then I got a glimpse of what it’s like to have 2 chronically ill kids.

Our girls take all sorts of medicines (our oldest takes around 10-12 separate medicines per day and our youngest takes around 11-13 per day).  Which means I’m at the pharmacy ALL.  THE.  TIME.  They don’t even have to ask our names anymore when we pull into the Walgreens drive thru.  And then there are the specialty medications that cost an arm and a leg and we have to special order through far away companies that are as easy to reach as Fort Knox.  I spend around 4 hours on average per month dealing with these companies.  Did I mention I’ve never liked talking on the telephone?!

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In order to keep them healthy, they need to do between 3-4 airway clearance treatments per day.  Each treatment takes 30 minutes, so that’s about 2 hours of our day right there.  We use a Hill-Rom Vest Treatment System; each girl has their own vest (it kind of looks like a life jacket, but it’s inflatable) that they strap on and put air tubes into.  They plug the air tubes into a type of compressor and the compressor inflates and “shakes” them for 30 minutes while they sound like little opera singers. This helps to thin and loosen mucus in the lungs and airways so they can cough it up.  While they are completing their vest treatments, they also have inhaled medicines to take.  My oldest only takes 2 inhaled medicines, while our youngest takes 3 inhaled medicines that are aerosolized through a nebulizer.  This allows the medication to reach deep into the lungs.  We try to space the treatments out about 4 hours apart.  If done closer than that, some of their inhaled medicines can make them super hyper [read: they become like meth-addicted ninjas climbing the walls].  And all of that equipment has to be cleaned and sterilized daily.

Well, I can read fabulous books to them while they are strapped down to their vest treatments.  Oh, except they sound like freight trains and I literally lose my voice trying to talk over them.  Seriously, I think my hearing has declined since they started their treatments.

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I can do this.  I can schedule in all their treatments and everything will be fine.  Just give me my Excel spreadsheet and everything will be OK!  In order to fit everything in, I have to get up about 2 hours before the girls’ first treatment.  Did I mention that I don’t like interrupted sleep and I’m SO NOT a morning person?  And we try to start the day off with an airway clearance and nebulizer treatment before breakfast, which brings me to the food they eat.

Oh, the food!  I can prepare these homemade gourmet healthy meals and be the picture of health for my children.  But because CF also affects the digestive system, our girls cannot absorb fat.  Let that one sink in for a minute.

What if you couldn’t absorb any fat from the food you eat?  If you’re like me that would probably be pretty helpful about right now!  But for our girls, it can lead to severe malnutrition, slow growth and development, and trouble fighting infections.  Our girls’ diet is literally high-fat, high-salt, and high-calorie – everything you and I can only dream of!  But per their dietitian I’m not supposed to become a short order cook fixing two different meals, so naturally God would put that type of diet in a home with two already “extra-fluffy” parents – and still ask us to be faithful stewards of our body.

Well, I can figure out all I can about CF and then I can really control their symptoms and issues.  So naturally, God gave each of our girls a separate complicating condition.  For our oldest, this means every other week trips to St. Louis Children’s Hospital for injections.  For our youngest this meant she was hospitalized 5 times her first year of life.  So much for control.

And when they do get too sick to stay at home, we head to the hospital.  We are blessed to be able to have such a fantastic specialty children’s hospital close to us.  Their staff makes our stays there as comfortable as they can.  But it’s the hospital.  And there’s only so much comfort to go around.  I can’t control anything in the hospital; people come in and out of our room at all hours of the night, noises beeping, lab tests being performed, needles poking my girls.  It’s an endless assault on sanity.

When they finally let us come home, we have to continue the medicines at home.  I become a stay-at-home nurse getting up every few hours to administer IV meds.  To all the nurses out there, you are amazing.  I seriously don’t know how you do it with such little sleep and such high stress.

And then there’s the endless battery of questions running through my mind: will my girls outlive me, am I doing it right, will anyone want to marry them, will I ever be a grandma, who will take care of me when I’m old and senile (I’m already halfway to the senile part), what if we lose our insurance, what will their quality of life be, how will I answer all their questions?

If it sounds like I’m complaining about my life…it’s because I am.  It’s not what I had planned and it’s not easy.  I feel ill-equipped and totally out of my league.  I’m so worried that I’m doing “this life” all wrong.  Some days I feel like there’s a family down the street that all this was supposed to happen to and God got the addresses mixed up.  And don’t even get me started on trying to keep my house straight and people in clothes that don’t horribly stink in the midst of all of this.  God took all of my perfectly laid plans and discarded them.

I am Jonah, stomping my feet and yelling that this isn’t what I wanted.  And my God graciously says that I’m right where He wants me: broken, unable, out of my league. Because that’s when He acts.  And He acts big.

He gently reminds me that my girls are not my own and their lives were perfectly planned before the foundations of the world.  They are fearfully and wonderfully made. He has a future for them I can’t begin to fathom.

And His plan for me is infinitely greater than I could ever imagine.  He rescued me from the domain of my own selfishness and placed me where I had to be unselfish.  He took my ambition for my own career and is slowly replacing it with a different ambition, a softer one.  One that doesn’t have as much flash or pizzazz as I had originally planned.  One that includes reading storybooks and wiping noses and holding broken hearts.  One where I can’t barrel through life at a blazing pace, but must slowdown in order to help them simply live.  One that I could never have imagined and one I don’t want to give up.

He took this hard-nosed, stubborn, control-freak, perfectionistic girl and gave me a messy, unmanageable, frustrating life full of the things I don’t like and didn’t choose.  And in the process, He is showing me that He is the greater gift than any circumstance.  And I am slowly awakening to the blessings of my beautiful life: my gracious husband and partner, my precocious (or precious – depending on the day) spitfire girls, doctors and nurses and researchers that I never would have met had my girls not been sick, and a church that embraces the crazy pastor’s wife that I am.  All things so intensely beautiful they make my heart sing in wonder if I let it.

But blessings are not the end themselves; they simply point to the One at the other end. And someday that One may call my children home before I would like them to leave.  As parents, we always say we want what’s best for our children’s lives, but what if what’s best is not this world any longer?  Is my heart so satiated in what He is for me, that I can release them into His care knowing it is the best that I could ever give them?  This rocky, unpredictable road is taking me there.

And so here’s my challenge to you…

I want to challenge you to list all the things you don’t like about your life, the things that frustrate and bug you, the challenges you face every day as a wife or mother, the hard things God calls you to out of your comfort zone, the dreams you’ve had to let die.  List them…and then look for what He’s doing through those things.  Look for His hand gently moving you through those seasons of change and trial to become closer to His heart.  After all, that’s what He’s after…a heart – a surrendered heart.

My circumstances will change and so will yours.  But one thing I have recognized is that if my heart is not rooted in the satisfaction of who He is, I won’t be truly happy no matter what is going on around me.  So God is in the business of upsetting plans and putting us in the path of His perfect, albeit upside down looking, grace, to sit and be astounded by who He is for us in Christ.

Won’t you join me?

5 Comments

  1. Ann 05/18/2015
  2. Sharon mcanarney 05/19/2015
  3. Kristi Land 05/19/2015
  4. Laura 05/19/2015
  5. Paula Coke 05/20/2015

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