A Letter to My Chickens…

Dear Chickens,

How can I begin?  How can you ever really explain to another Human Being how much they mean to you?  Most especially, how can I ever make you understand the depth of my love for you, until you have children of your own?

Losing my own mom when I was only 20 years old, I felt so cheated…it seemed like there was so much left to say, so much left to learn, so many milestones left to reach.  Now I would have to do all of those things without my mom.

At times, I have definitely felt that pressure and anxiety in my own mothering of y’all.  I only have a brief window in which to pack as much as possible.  In those 18 short years, wisdom has to be shared, comfort has to be stored up, and moments have to cherished.  It is such a delicate balance though, because if I close my eyes to cherish one milestone for a second too long, I might miss another.  You grow up so fast, and whether or not you agree; 18 years is but a moment.

How can I possibly make sure that I am getting it all in?  Have we made you wise, and not just smart?  Have we given you the tools you need to go into the world and make wise choices?  Thriving under my wing is easy…expected even, but can you fly?  We have this discussion often when you get into the comparison game about what you think those around you are accomplishing.  Some parents, pave a path of least resistance that makes failure impossible.  The runway is perfectly smooth, your friends might look like they are gliding along; it doesn’t mean they can fly at the end of the day.  If all you do is spend time preparing the runway, and never spend time on the actual flying lessons; you still just have a nice runway and a flightless bird.  I don’t want that for you.  I want you to have the deep potholes, the black ice, and the short runway to practice on.  I want you to freak out, and have to call “MAYDAY”, or whatever a bird would yell if they were in trouble.  I’m not really sure what goes through that little bird’s mind as they are spiraling toward the ground, when they think their mama might not rescue them.   Probably the same thing that goes through your mind’s sometimes.  In the end, you know that I always will scoop you up…and recently, that has probably been more than I should.  I think every mom is guilty of some runway paving from time to time (or at least putting up a few detour signs).

It is the worst kind of pain to watch your baby hurt; especially when you can see the pain coming and you can’t do anything to stop it.  So basically, the teen years.  I could try to sit here and wax poetic about how beautiful these moments are…helping you navigate these treacherous waters of self-discovery, BUT let’s not lie to each other.  This is hell, on everyone!  I’m not saying it has all been bad, obviously.  There are absolutely Pinterest Perfect moments now and then.  There are also You Tube Epic Fail worthy moments… I sometimes wish that I could bear to be a head-in-the-sand mom, so that I could miss some of the epic fail moments; but that would mean I would also risk missing some of the best moments too.  Through pain we learn some of life’s hardest lessons.  If I shield you from the pain, I also cheat you out of lessons that we all need to learn eventually.

Don’t ever mistake my lack of intervention for a lack of caring; it is actually because I care so much that I don’t interfere sometimes.  Other times, I will teach you how to fight.  You are still young, and you need to learn when and how to wield your powerful voice.  There is also great power in peace.  Learn how to make peace with others, and you can control situations that seemed utterly doomed.  Most importantly, you need to know when to fight and when to make peace.  There is a need to know both.

The world is waiting for you.  The world needs you to be ready.  If you aren’t ready for the world, the world will eat you up.  It is my job to make sure you are ready.  This reality haunts me daily; sometimes over the most mundane realities, like sorting laundry, or using an ATM machine.  Have I prepared you to face anything?  Have I exposed you to enough real life circumstances, that you will be able to roll with actual punches in your life?  Can you deal?  Can you survive on your own when you are pushed out of the nest?  Can you fly?  Sometimes you’ll do something spontaneously awesome, and I beam with pride because I know you are so ready for the next step.  Other days, you call me from the grocery store because you can’t find something.  We keep doing this one step forward, two steps back dance to adulting.

The crazy thing is that I’m positive my mom had these same exact thoughts about me at various stages…I just pray that you don’t put me through anything close to what I chose for myself.  Learn from my missteps.  If you never hear another word, hear me now; being smart is not the same as being wise.  Don’t try to ignore the voice of discernment.  Most importantly, always remember that we are your safe place, we are your soft place, we are your home.  There is absolutely nothing you could ever do that could change how much we love you.  We are proud of you.  We are proud of who you are as people; just because of who you are.  We like what you; most of the time.  We think you are remarkable human beings, but that isn’t why we are proud.  Our family wouldn’t be our family without each and every one of you; being just exactly who you are.  Always stay true to who you are.  If you forget who that is, ask us and we will remind you.

I want you all to grow into the people you need to be in this big, crazy world.  I also want you to know, that I will never let you fall, and not be there to help you get back up.  I am always here to support you, as long as you want (and probably longer), and to love you through all of the ups and downs that will come your way.  I will love you, and support you; but I will not carry you.  I just want you to stand tall, and grow into your own person.  Trust God’s path for your life, and trust yourself to walk it.  If ever you are not strong enough to walk alone, you have a mighty God and a loving family walking with you every step of the way.  You are never alone in this big scary world; but you do have to walk on your own two feet, we won’t be carrying you or pushing you.  You are strong enough and brave enough to do anything you put your mind to; so go do it.

Always remember who you are, and return with honor.  I love you more than anything.




No Mistakes…Just Happy Accidents

A terrified, lost girl, made an impulsive and rash decision.  A decision that would completely change the course of her life.  Friends and family called her stubborn and silly…confused and bullheaded.  Maybe I am stubborn, maybe I am bullheaded, but looking back on my life today, I wouldn’t change a thing.

You hear people say all the time, their struggles have made them into the people they are today.  I can promise you, my scars are my story.  My kids are my story.  My family is my story.  Nothing would be the same,  had I not made the choice that day to pack up all of my belongings into a U Haul trailer behind my Chrysler Sebring. I moved by myself to St. Paul, Minnesota.  I had nothing waiting for me there…just some empty promises from some people I hardly knew.  My friends and family were right, I was too stubborn to turn around and go home.  I couldn’t admit that I had made a mistake.  I felt like I had no life in Texas anymore.  I guess that isn’t completely accurate…I didn’t want the life I had in Texas anymore.  I didn’t want to know that girl anymore.  I just wanted to escape.  So I ran.  I ran to a place where no one knew me.  No one knew my mom.  No one knew my past.  No one knew anything about me or my family.  I could start over.  I could be anyone.  Or I could be no one.  No one expected anything of me.  No one cared if I did nothing, became nothing.  No one cared if I didn’t show up.  Or if I disappeared.  No one cared if I didn’t go to church.  No one cared if I looked sad.  They didn’t know me well enough to realize that I seemed to be having an off day.  It was wonderful, for about a month.  Then the reality of the situation set in.  I was alone.  I truly was invisible.  I thought that was what I wanted, until I was.  Then all I wanted was to be seen again.

Loneliness does strange things to a person.  Loneliness can make a person completely forget who they are, who they want to be, or where they come from.  Loneliness can breed desperation…and desperation is never pretty.  Never.  I had never felt as ugly as I did in those first months I lived in Minnesota.  So how does a young girl, lonely, desperate, and feeling ugly get over her loneliness?  Probably in all of the worst ways…I know this young girl went looking for the wrong kinds of attention, in all of the wrong kinds of places, in the most embarrassing ways.  I sought attention from everyone, at all times…I’m so humiliated even remembering those times now.  Yes, I was young; but I think it was more about my extreme unhappiness with myself than my age.  I craved that attention because somehow I felt like that would fill the void.  I was miserable.  I just wanted something, or someone to make me feel better.  I wanted someone to like me enough for both of us.

The trouble with desperation, is that animals and losers can smell it like fear.  When you are desperate, that is all you attract; animals and losers.  I became a magnet for losers.  I began to think that was all I deserved.  I started to think that these were the only guys attracted to me.  I never paused to consider the vibe I was giving off, or to look at my behavior.  I never reflected on my part in the equation.  I just let these guys slowly peck away at my self worth and eat away at everything I had ever stood for.  I was becoming someone I didn’t even recognize anymore.

During this time, I am hearing my inner voice trying to guide me…feeling the Holy Spirit tug on my heart strings; but I’m fighting it.  I continue choosing my own way.  I guess I like the difficult road.  One night, I break.  I just can’t do this anymore.  I can’t be this person anymore.  I miss the old me.  I want to know her again.  I want to be someone that my mom would recognize.  I want to be someone that I would recognize.  I want to be someone that my mom would be proud of.  I want to be able to look at myself in the mirror again.  I want to know the girl that I see in the mirror; right now, this shell of a person just scares me.  I decided that the time was now or never to make some serious changes in my life.  I packed my car, and drove to Michigan to visit my Dad for a few days.  I hadn’t seen him in quite a while at this point.  I even toured the local college, considering going back to school.  I just knew that I needed to get back on track.  I had no idea where to even begin.  I was so lost, that I didn’t even know which way was up.

I went back to Minnesota, deciding that running away again was not the answer.  I found an apartment, got a good job, and was somewhat settled.  Life was alright.  Minnesota was not Texas though.  Think about it…no one sings about the North.  Every good song is longing for something Southern.  Southern charm, Southern nights, lightening bugs, creeks, magnolias, cicadas, sweet tea and blue bonnets are what the South is all about.  People sing about the South for a reason, it’s worth singing about.  I was so homesick, but I didn’t feel like there was still a place for me in Texas.  My family had all scattered.  My friends lives had all changed dramatically in the years since I had left.  Some were married, some were still away at college, some had moved away…everyone’s lives had changed.

Eventually, life in Minnesota became my life, and I made some amazing friends. Friends that shaped and changed my life forever.  These friends were with me during some of the biggest times of my life.  They laughed and cried with me, they experienced every up and down that life dealt me.  These are people that, to this day, still hold special places in my life.

A silly, spur of the moment decision to move 945 miles across the country, changed the map of my life.  The direction my life would have gone, had I stayed here in Texas…who can say…

I do know that moving to Minnesota, brought me to my husband and gave me my kids.  I most certainly would not have the family I do today had I not moved to Minnesota.  You might have a different opinion about how God moves, or destiny, or whatever…but I know, that in my experience, I needed to be in Minnesota.

When the timing was right, God opened the door for us to move back to Texas.  He brought me home.  When the timing was right, my friends were here, their lives lining up with mine once again, we picked up right where we had left off.  When the timing was right, my family returned to Texas also.

Funny how life has a way of twisting and turning.  Sometimes I feel like the story of my life is like watching a balloon artist… you can’t figure out what they are doing, you can’t see how it is ever going to turn into anything, you seriously begin to doubt their credentials as an “artist”, then they pop a balloon seemingly on purpose, they just keep twisting and turning…and then out of nowhere, suddenly before your eyes, there is a majestic balloon creature, plain as day.  Every twist and turn suddenly seems so obvious, once you know what the creature was meant to be.  The road getting there might not have made sense to you, it might have seemed rather roundabout and senseless at times, but the end result is no less wonderful.  My life now, my family, my story is that balloon animal.  You don’t have to understand how I got here, you just have to know that I made it.  Sure, I popped a few balloons along the way, and I’m still fragile; but there is no question that it took an artist to make me and form me into what you see today.  Scars and all.

I believe that God used my unbelievably misguided decision making for His good.   I believe that in my life, to quote Bob Ross “there have been no mistakes, only happy accidents.”

Choking on Fear

A sweet, dear friend just gave us a book to read about a young girl’s life mission in Africa.  This girl felt called to Africa right out of High School, and has lived there with her 14 adopted children ever since.  This book was a gift to cheer up my sweet girl after 3 days spent in the hospital; undergoing tests and procedures that were rather unpleasant.

In the past, when she hasn’t had the strength or energy to read a book on her own, we have taken turns reading the book aloud to each other.  These books have become some of our favorites; whether or not they have been the best books ever written is a mystery, but they remain our favorites still, because of the way we read them.  This will be one of those books.  First, how we acquired the book, and then, reading it to each other.  All of this to say, that we were having a special moment, reading a special book.

My son went on a mission trip to Uganda last year, so the descriptions in this book were all lining up with stories he had brought home to us.  We could imagine the children’s faces in the book from his pictures he had taken on his mission trip. I kept thinking that my son had basically gone on the same trip as the girl in this book.  How cool is that?

When my son had returned from his mission trip, he told me that one of the thoughts that hung heavy on his heart while he was in Africa, was about his sister.  He wondered if she would ever be able to take a mission trip like he and all of their classmates do each year.  Will her Primary Immunodeficiency keep her from going on the trips that her heart so desires?  He has been to Guatemala and Africa, and this year he is going to Prague.  He just prays about the trips offered and picks whatever trip he feels called toward.  Since her body lacks the ability to build antibodies to infections, she gets sick from just about any bacteria, virus, and foreign pathogen.  Going away on missions to a third world country, while being totally selfless, is a rite of passage in our school.  Unfortunately, it won’t be like that for her…there will always be fear.

Will she ever be able to go on a mission trip, like me?

So as we are reading this book, with this girl’s amazing testimony, I bury my fears.  As she speaks about a country riddled with disease, swarming with insects that carry disease, and covered in other possible dangers, I bury my fears.  I picture my son there serving among these joyful people, and my heart swells with pride, and thankfulness that he came home unharmed.  Then it happens…my daughter says she wants to do something to help.  She wants to help these people, she wants to serve them too.  I tell her that she can find an organization to give to, or she can start one of her own.  Then I quickly start reading again; I start reading again about the young girl who risked it all to go and do something.  I make it maybe another chapter…another chapter about kissing fungus covered heads, and open sores, HIV, and malaria.  I read another chapter before she says that she wants to go to Africa.  Doesn’t she realize?  Doesn’t she know?  She can’t kiss fungus covered heads, or doctor open infected wounds, or get stung by infected bugs…she can’t get cuts and scrapes in a dirty country.  She can’t get cuts and scrapes in our country.

I can never say these things though.  I can never let my own fears or understanding of her disease limit how she lives her life.  If I did, she wouldn’t be living her life.  So, I just gulp and try to keep breathing.  I would find a way to make it safe for her, if that was what she really felt called to do.  God would either pave the way, or slam the door.  In the meantime, I will bury my fears, and tell her that she can go to Africa, someday, if that is what she needs to do.  She faces limits every day because of her illness, I don’t need to be there to remind her of things that she might not be able to do in the future.  The future isn’t here yet.  Science is doing newer and better things all the time.  I still pray for a cure to this disease; by the time she is old enough to go to Africa.  If not, I won’t be the one telling her she can’t go.  I will be the one helping her figure out how she can go safely… all the while choking on my own fears.

If she isn’t afraid, it isn’t my job to make her more afraid…maybe sometimes, it is her job to make me a little less afraid.

Amazing Grace

Grace.  Such a beautiful word, and such a beautiful concept.  Amazing Grace, how sweet the sound.  Yeah, I remember growing up singing those words, hearing those words, even thinking that I understood those words.  Even when I lost my mom, I remember attributing my peace and calm to God’s grace.  That was the canned response that I had heard so oft repeated by those hurt and grieving in church.  That was the proper lingo.  Rest in God’s grace.  Oh my goodness how I felt like a failure when the numbness (aka peace and calm) wore off and I actually felt the raw pain of losing my mom suddenly at the age of 20.  I felt a lot of things, but God’s grace wasn’t on the list right away.  There is a distinct difference between feeling God’s love, and having God’s grace.  Grace is what saved me and allowed me to come crawling back to my savior even after I had run, kicking and screaming in every direction, to get as far away from Him as possible.  Grace is what told me that He would still be right where I left Him, with arms open wide, waiting to receive me.  Despite my fall, despite my decisions, He was still there.

I often see young people, that remind me of myself at their age.  While I would NEVER in a million years wish anything like what I have experienced upon them; I do often wonder how deep their understanding of grace goes.  Have they ever truly experienced grace, as I hadn’t at their age?  Are they singing about something that they only think they understand?  We never really know the depth of another’s story, but I often watch people during praise and worship.  I find myself feeling the words, and wondering if those around me feel them too.  Like when we sing Amazing Grace, I am touched by those words because I was set free.  When we sing about healing, all I can do is call out to the great physician on behalf of my daughter.  There are so many twists and turns in my life that I think, if only others knew my whole story…Other times, I’m grateful that they don’t.

Sometimes, I think about my testimony and how complicated it is from the very beginning.  I wonder if God ordained my life to work this intricately, or if I just really complicated things this much; and He just had to figure out a way to use my foibles for His glory.  My life now is so beautiful, that I find it hard to believe that God could have had anything else planned for me.  Perhaps He had a little more direct route to get here though.  A few less potholes and pitfalls might have been nice.  The truth is, the times when my life was the absolute darkest, were the times when I was fighting that voice of the Holy Spirit tugging on my heart; the voice that told me He had something far better for me, if only I would listen and follow.  My own selfish desires, and guilt made me bury that voice deeper and deeper under my own plans for my life.  The here and now took precedence over what would be better for me down the road.  I hated even looking into the future because I hated looking at my life and the choices I was making.  I didn’t like thinking about consequences or the repercussions of my decisions.  I was hurting myself and the people who cared most about me.  To say that I was on a downward spiral was an understatement.

I was so isolated in my pain, that I wouldn’t even hug people or let people hug me.  I would cover my face and look away to avoid eye contact that was sure to make me cry.  I just wanted to disconnect from my feelings; feelings that made me look at the person I once was.  I’ll never forget the first step that brought me back.  My first saving grace.  I met a girl who would change my life forever.  We were 21, a bunch of friends heading to a birthday party for a guy I had never met.  I was still new to the area, so I had never met most of these people.  Our mutual friend introduced us, and off we went.  In the car, she was playing a song that she was going to sing in church on Sunday…I had sang that same song for my youth group years before.  We were both stunned that anyone else even knew the song.  It was a song by the christian artists, Point of Grace.  How fitting.  We bonded instantly.  I told her about my mom…the abbreviated version, and we were fast friends.  We had to stop by her mom’s house to pick up the birthday present…this would be the second step of grace.  We all went in to see her mom, because this was a home where everyone was welcome and comfortable.  To this day, I can’t tell you what happened when we walked into that house…I only remember that she briefly told her mom who I was, and that my mom had been killed in a car accident a year ago. Before I could deploy my usual defense mechanisms, her mom had me in the tightest hug of my life.  I hadn’t been hugged in a year.  We just stood there, balling our eyes out in a group hug that lasted forever.  She hugged me until I couldn’t cry anymore.  No one cared if we arrived to the party on time (I’d later realize that she never arrived anywhere on time), they only cared about loving me.  I had just met these people hours prior.  Over the next few years, they would change my life in immeasurable ways.  God used them to start drawing me back to Him.  To me, that is grace.  That is what grace feels like.

And that is only one example…when I sit and think back over my life, I stand in awe of all the times I was shown amazing grace.  Yes, I have known amazing pain, but in each of those circumstances, there have always been love and grace also.

There will be pain and sorrow in this life.  There will be crazy and unfair.  The important thing, is to not miss the beauty of the amazing grace that is all around us.  Sometimes, you have to look for it.  Sometimes, it isn’t what you were hoping it would be; or wanting it to be.

Sometimes, you just have to remember that His grace is sufficient.

Wrong Side of the Sidewalk

Do you ever feel like you are walking through life on the wrong side of the sidewalk?  Like everyone else is going one way, and you are going the other?  Do you ever feel like everyone else gets the joke but you?  Like they’ve all heard the beginning of the story, and understand the ending?  Like you’re at a dinner party where everyone keeps whispering?  I’m in a season like that right now…

The worst part of it all, is if you ask me to pinpoint exactly what is making me feel that way, I can’t tell you…because I’m not in on it.  That’s the problem!  I feel like so many things in my life are in transition, that I can’t possibly be moving in the right direction.  It feels like I’m almost moving backwards at times; or worse, I’m standing still like a deer in headlights, when I’m supposed to be doing a thousand things at once.  Sure, some will say this is a lack of faith.  I’m sure most of us control freaks will admit that we struggle in the area of really letting go of the things we pray about.  Trust me, I pray about that too.  I’m still a work in progress.  Any mom who says she hasn’t wrung her hands over where her child will go to college, or how they’ll do on their SAT/ACT, or Senior year in general, Christian or not, is just not being honest with herself or anyone else.  We are human, and we are moms; moms worry, by definition, moms worry… ALL moms.

So, I guess if you ask me what is going on with me, I’d honestly say –  life.  The fact that I am a daughter, a wife, a mother, a sister, a friend, a neighbor, a caregiver, a tutor, a dog whisperer… each of these roles has so many unique challenges.  I am so blessed, and I love my life.  I wonder though if I am enough.  Do I make a good enough lunch?  Are the uniforms wrinkled?  Are the uniforms clean??  Did I sign up to volunteer?  Are my kids well-rounded?  Am I helping them enough, but not too much?  I struggle with the comparison game on social media.  Suddenly, if you don’t post pictures on certain days of certain pics, it directly correlates to how much you love your kids.  I’m not sure if you were aware of this fact.  But social media will sell you this lie.  I struggle with the comparison game at school events. Am I dressed to the 9’s, even though I didn’t leave my house all day?  Is my hair and make-up perfect?  Is my body perfectly toned in my 40’s, like I’m in my 20’s?  Did I “assist” with a school project that looks more like a craft project, bake something for the front desk that looks like a shower gift, and craft a goody basket for the teacher’s first day that would fetch $100 at a boutique?  Don’t even get me started on holidays, teacher appreciation, or last day of school.  I’m just as much to blame as the next mom, because I play into the madness thus perpetuating the game.  Who will stop the madness??  Who?

I find myself wondering if I am wearing so many hats, that the really special ones aren’t being showcased.  Am I being spread too thin?  Some call that mom guilt.  Well, I am drowning in it.

I love helping the people in my life.  I am certainly not complaining about that.  I hope that isn’t what this sounds like.  I just feel lost sometimes in finding my own purpose among those tasks.  Maybe that is my purpose though, and I’m just missing the point.    I look at my current life, and there isn’t one thing that I would omit or change.  Well, I might get my kids to listen to directions all the way through on the first time, so that I don’t have to repeat myself 3 times…that would add about 3 hours to each day.  Other than that, I wouldn’t change a thing.  I take that back, there is one more thing…I do think now that all the kids are up to speed on the “magic” department, I think they should do some payback and give me their remaining years at home with the Dish Fairy and the Laundry Fairy.  It only seems fair turn of play.  I’m not even asking for money.

I’m just overwhelmed by things I can’t control.  Somethings I can’t even influence.  I keep saying that it feels like I’m in that movie The Fugitive, where he couldn’t get anyone to believe anything he said.  The more he tried to prove his innocence, the more he looked guilty.  That is how I feel when I am trying to take control of things…like no, really listen, I should be in control.  Nope!  I’ve been here before, when the older one was graduating.  I know that I can survive this.  I know that I will grow from this time.

How can a child who literally has to always just go with the flow, and has everyone else take control of her body, telling her what is best for her 24/7 handle life with such grace?  How is she so trusting?  She truly does have the faith of a child.  She trusts that I will take care of her, and that I have her best interests at heart always.  That even when things hurt, they are for her own good.  She doesn’t get angry or bitter, she doesn’t hold a grudge, or grow distant.  She doesn’t run away, or try to take over.  She certainly has never tried to tell me or the medical team how things are going to be done.  Why can’t I learn to be more like her?  Why can’t I have more faith like her?  If anyone has a reason to act up, it would be her; but she doesn’t.

I guess sometimes I get in these funks… I look back and I just question things a little bit, more than I probably should.  Look at my life… what has it been for?  How is this being used?   All of this past pain and heartache.  All of these “lessons”.  Was it wasted?  I just don’t see where I am going.  It feels like I am living each day, with one foot in front of the other; making it to the next day.  Is that what I am meant to do?  Am I really moving in the right direction with my life?  I just want to go in the right direction.  I want all of the things I have been through to mean something.  I want to do something with my life.  How do I take where I have been, where I am now, and turn it into a direction?  How do I continue to wear my many hats, without letting them completely bury me as an individual?

Have you ever felt stuck?  Walking backwards?  Going down, on the up escalator?  How did you get going in the right direction?

For me, this blog was my first step in that direction.  Sometimes finding my way here is difficult.

What was your first step?  Have you taken it yet?

A Filtered Life

My kids get so tired of the broken record in our house…The song that is playing telling them to stop looking at what everyone else is doing online and start living their own lives.  I’m pretty sure at this point we just sound like Charlie Brown’s teacher to them… “Waaa whaa wuu whaa waaa waa”.  I have definitely learned that it isn’t just our kids, this is something that is prevalent among their age group.  They are voyeurs in an online society.

We have the whole world at our fingertips today; unlike when I was a teenager.  I’ll never forget my Senior year in US History having to write a HUGE research paper.  This was the first time we were expected to include all of the tedious extras like headers and footers, all the crazy stuff that I’d never be able to do today.  Anyway, the paper had to be typed…OK, this might seem obvious, but let me remind you that this was before the average household had a computer.  Our school library had maybe 8 computers for the whole school.  My boyfriend had a computer, so my mom let me go over to his house to type my paper.  This was a treat because it was a school night.  Well, I was not very proficient on the computer, so it took me forever.  I think it was 10:00 P.M. and the doorbell rings.  Now, my mom had never met the boyfriend’s parents, until that horrific moment.  There stands my mother, in her bathrobe, hotter than blue blazes because I was out so late without calling.  She of course had visions of me lying in the ditch somewhere.  This was also before cell phones.  Embarrassed doesn’t begin to cover it.  I just think about what I went through trying to get that paper finished…from the research, all the way to the typing and printing.  Nothing about that process was easy.  Kids now, have the ability to get any information they want  instantly.  Anything they want to buy, Amazon can get it to them almost instantly.  Pictures are now instant; not like the ones we used to take and not realize how bad they were until after we waited days for them.  Movies are On Demand, so they can watch what they want, when they want.  Everything is geared toward fulfilling this need for instant gratification.

Not only are we leaning toward instant gratification, but we are beginning to guarantee instant gratification with complete satisfaction.  So now, if you don’t get exactly what you want, exactly when you want it, you are guaranteed to be compensated in some way.  Companies are going above and beyond to try to make everyone happy in all circumstances.  Our kids are being taught that they should never be uncomfortable, do without, or have to wait for anything.  How then, can we be surprised when they act entitled?  Trying to raise “normal” kids in today’s world, is a full time job.  We have to constantly undo what the world is trying to ingrain subconsciously.

I know when I was a teenager, I thought my parents didn’t understand me and what my life was like.  Honestly, I think that is pretty textbook teen angst.  However, I do believe that kids growing up in this “social” world do have it harder than we did.  Think about it… I always compared myself to the popular kids in my school.  There were maybe 30 kids that I, at one point or another, envied for some odd reason.  These kids today, are constantly comparing themselves to thousands of other kids.  I am so thankful that my childish antics were never made public.  We didn’t have cyber bullying like these kids do today.  We also just didn’t have access to as much information as these kids do today at such a young age.

These kids put their whole lives online for everyone to pick apart.  I can’t imagine being in school, and having that fear looming in the back of my mind all the time.  The fear that my every move was being documented for everyone to see.  The old adage used to be true, that if you give it time, they’ll forget and start talking about something else.  Today, we have the internet to make sure that our mistakes and failures are documented forever.  Like I said, I’m just so thankful that the internet wasn’t around when we were teenagers.  Who’s with me?!?

I’m just so tired of this fake online world.  Everyone posts the picture perfect life:  The clean house, the perfect picture with the perfect filter, the kids before the chaos.  Two stories about two of my favorite Facebook people from High School.  I respect each of them so much for their authenticity.  I strive to be more like them when I go online.

#1.  Woman posts amazingly gorgeous picture with her beautiful daughter and receives overwhelming amount of compliments and likes.  She notices that in the comments a large number of women are comparing themselves to her and feeling bad about themselves.  She immediately comes out and tells everyone that she is no different than they are, she has lines and wrinkles too.  There was a filter on the photo and she posted the real photo without the filter.  She gave a little pep talk to all of the women about being kind to yourself.

Yeah, so much love for this woman and her taking a stand for authenticity.

#2.  Woman on numerous occasions has posted on Facebook, or other social media sites, her “Mom Fails” as she calls them.  Like, she does post pics of her messy house, or grass stains on Easter, or just life in general.  Life is messy and sometimes we don’t have it all together.  We need to get to a place of acceptance ladies.  This is real life.  I adore that she posts with no filters and lets us know that we are OK, because we are doing the best that we can.  She is such an encouragement to so many other struggling moms.  Those posts, although intended to be funny, are lifelines to some women who feel like utter failures.

When did living life through a filter become a good idea?  I would think it would be exhausting trying to be perfect all the time.  I just don’t have that kind of extra energy.  Living the normal day-to-day is hard enough, without touch ups and edits.  We need to be teaching our kids that in real life, the world doesn’t always give us a chance to polish something before others see it; sometimes there is no filter, only consequences.  We need to be teaching our kids, that some things are worth waiting for, and most things we must work to achieve.  Instant gratification is usually gone as quickly as it came.  I want my kids to have a life, not a ‘Story’.  I want my kids to have memories, not ‘Likes’.   I want my kids to have relationships, not ‘Friends’.  Most of all, I want them to realize that there is a world all around them that is full of amazing possibilities, if they will just look up and look out.  Break free from the online social trap and start living their own lives.


Crawling Out of the Wilderness

I have no idea what I am going to say, I just know that most of you feel like I left you hanging when I stopped telling my story.  I really don’t know how to continue without betraying parts of my story that aren’t mine to tell.  I’ve decided to try though, so if parts seem a little vague or like I’ve skipped over something, please understand that is because I’m trying to respect the people I care most about in this crazy life.

When I say, crawling out of the wilderness, that is precisely what it felt like to me.  It took me years to find my way out, and even then I didn’t make a quick exit.  I would see glimpses of light and start heading in the right direction, but only slowly and very close to the ground; so as not to call attention to my strategy.   I had been wandering for so long, I was scared to even think about what my life could be like on the outside.  I didn’t think I deserved a life free of strife and uncertainty.  I was so beat down and ashamed, I couldn’t even fathom walking out of this wilderness.  But I did eventually meet the right friends who convinced me otherwise.

I would never have made it without those friends in my life.  They offered shelter, and guidance; free of judgment and shame.  These friends just loved me.  We all had our scars, and we didn’t have to hide them from each other.  These friends picked me up, dusted me off, and reminded me of who I once was…the girl I needed to be again.

I’ll never forget, at this point in my life, how I wouldn’t let people hug me because it would make me cry.  I would cover my face and hold them at arms length…please don’t hug me.  One night, my friend’s mom grabbed me in her kitchen and just held me against my will and cried with me; she rocked me back-and-forth, just holding me.  I have no idea how long we stood there.  It was the first time she had ever met me!  That woman would later change my life…again.  That night she cracked a wall that had been standing for years.  I was hurting so much and I needed to let people in, but I didn’t want to feel that pain.  I really wasn’t sure that I could handle it.  That group of friends would walk that path with me for years.  The pain of losing my mom, walking away from college, moving away from my childhood friends, estrangement from family, feeling like a failure…the list goes on and on.  Not to mention a list of sin a mile long.

Being the only one of your friends  to have kids at a young age, kind of makes you the wet blanket of the friend group.  They didn’t really understand me a lot of times.  Why couldn’t I go out on a moment’s notice?  Why couldn’t I go out every night?  Why was I so tired?  Why did I not care as much about their drama?  I was a very young mom, and that changed me.  I hope for the better, but it was still very hard at the time.  As a family, we had a lot of growing up to do.  Priorities shift as you get older and people naturally change…that is difficult on any relationship.  We had growing pains just like everyone else.

We tried to do the right thing and be active in church.  We wanted to raise the kids right.  I never thought that was going to be so hard for me.  I couldn’t even pray in front of anyone.  I felt like a hypocrite.  I still carried so much shame, that I felt like every sermon was about me.  I thought the other moms at school were secretly judging me for my past.  To be fair, I wasn’t wearing a t-shirt outlining my sinful past or anything, so I doubt they even knew my sordid details (or really cared for that matter).  I made a friend with a similar sketchy past and we became fast friends, since she felt the same way.  We were both unnecessarily paranoid.  That church and school were amazing and everyone loved us no matter what.  The problem was in my own inability to forgive myself.  That wouldn’t happen until years later when I came to the Women’s Conference at Prestonwood.  I was going to the North Campus at the time and my friend asked me to join her at the conference.  I was hesitant because of the hotel stay, and time away from my family…I am a total home body.  I went though, and God moved in a mighty way, like He tends to do when we try to resist.  I was completely broken.  I mean, ugly crying, snot faced, uncontrollably broken, on my knees.  I was running in just about every area of my life, and I was still hurting so much.  I felt like that day in my friend’s mom’s kitchen…I needed to just be grabbed against my will, and held until I caved.  That is what God did in that sanctuary, when I prayed that day.  I felt this massive weight fall away for the first time in 15 years.  He had forgiven me, I just had to forgive myself, and walk away from those dark days.  Leave it at the cross and be free from it.  Grace and mercy go hand in hand.

That was when things started to really turn around.  In fact, that is when I even learned about the wilderness I had been trapped in for so long.  I knew that I wanted out, and I knew that He was the way out.  I started really focusing on each area of my life and trying to be kinder to myself.  I set new goals for my life and really kept faith that they could be achieved.  The wallowing stopped.  The me as a victim stopped.  The world out to get me stopped.  I was renewed.  I was hopeful.  I had joy again.  I was finding my way back to the clearing.

This doesn’t mean that I don’t have dark days.  I think we have established that I definitely do.  The difference now, is that those dark days aren’t lost in the wilderness days; those dark days are just temporarily overcast days.  I can handle some days without sunshine.  Not all of our days are going to be beautiful and bright.  We just have to know that the clouds are going to pass and the sun will shine again.  Ride out the gray days and wait for the beautiful ones…they are worth it.  And you know, sometimes the gray days can be nice too, we see more when we aren’t squinting from the bright sunshine.  Maybe there is something you’ve been missing…it’s OK to feel pain and process those feelings; no one is happy all of the time.  Just don’t lose your joy.

Now that I am older, I think back to that mom who didn’t listen to my request not to hug me.  That simple gesture, in her mind, changed my world.  How many kids, young people, or friends do we come into contact with that need us to make a simple gesture that could change their world?  Are we paying attention?  Are we looking beyond their words or actions to see what is in their eyes or in their hearts?  There are hurting people all around us; take the time and the risk to reach out and be there for them.  I am forever grateful that someone did that for me.  Like her, you might not even realize what you did at the time; that is the greatest gesture of all, when it just comes naturally to you to love them.

So, I guess that is what really brought me out of my wilderness on many levels…friendships.  Friends that loved me enough to see past my mistakes and friends that loved me enough to see my pain and bring me to the one place I needed to be most… at the cross.   Most of all, my best friend, my husband for sticking by me and growing with me through it all (well, most of it).

There is still so much to this amazing story, I hope that you will stick with me as I gain the courage to tell more of it.  Maybe I’ll get more creative in how I can tell the really good stuff without betraying any confidences…

Thanks for reading.

The Shed

Have you ever had something test a relationship to the breaking point?  Sometimes it is with your spouse or significant other, sometimes it is with a really good friend; whatever the case may be, y’all are tested.  For me, it was the day very early on in our relationship, when my not-yet husband asked me to help him build a shed.  Now, he was a very handy man, and I knew a thing or two about simple construction from my dad….But that wasn’t the kind of shed he had in mind.  This was the shed of all sheds.  When I agreed to to help with this, our first co-project, I had no idea that this would bring us to our breaking point.

Looking out at the backyard; there was a clear side, and then there was a completely dense with brush and debris side.  The clear side was already level and open, the other side was anything but.  Now I ask you, which side would you have thought he wanted to build the shed on?  Right??  NOPE!  He wanted to clear and level the OTHER side!  Oh my word!  OK, so first struggle, we aren’t talking about grass and weeds.  This was stuff taller than us and basically trees.  We get out there and start grabbing stalks to cut when our arms start burning like fire.  Oh, so this is actually Stinging Nettle, a plant that causes a burning rash when touched.  Very nice!  Long sleeves, gloves, pants…back at it.

Have I mentioned that he wanted to do this project in a weekend??  Yeah…

So, we clear and level the area for the new shed.  Mind you I do NOT have a willing heart at this point.  I am mad at the location as I’m constantly looking at the nice open, level piece of land just sitting there mocking me.  Finally, it is clear.  In this time, he has decided that because of this location the shed should sit on a concrete slab.  Now let me interject that we are in our mid 20’s and have little to no extra funds…I knew we would be doing this concrete work ourselves.  We mixed concrete in a wheel barrow and paint buckets with a drill and screw drivers…I still to this day can’t imagine how we survived not killing each other that day.  I was literally on my hands and knees spreading wet cement while he mixed and poured.  We were both cut to pieces from the rough mix.  It was hot and were beat up and tired.  I doubt a lot of you have ever mixed concrete by hand, but it gets heavy.  Not to mention, we didn’t get the ratio exactly right; so that slab is solid as all get out.

Are you noticing that we haven’t even started the shed yet?  The shed came in one of those DIY kits from the hardware store.  The instructions were confusing because so many of the pieces, which weren’t labeled, looked exactly alike.  On build day, his parents came to help, probably trying to mediate so we wouldn’t kill each other.  In reality, they were snipping and we were snipping…it became a guys vs girls scenario because us girls wanted to follow the instructions and the guys just wanted to get it done.  By this time, I hated this shed so much.  I hated everything about this shed.  I hated talking about this shed, I didn’t really care if it ever got done.  I never wanted to see this shed again.

But we all pulled together, and the shed finally did get finished…after we realized that we had put the shingles on upside down.  ARGH!!!  In the end, it was beautiful, it was the best shed ever.  We were able to keep so much stuff in there and nothing was going to get in there with that concrete slab.

Over the years, after the rawness wore off, that shed became more of a barometer for our relationship.  It became a symbol of our strength, as silly as that sounds…if we can build a shed together, we can do this.  The idea is this, we tackled something early on in our relationship that made us work together, compromise, communicate, and apologize.  Funny enough, that shed also made us do all of those things in front of other people…his parents and our neighbors who came to gawk at the crazy young couple building a shed.

I often worry about this new generation of kids who expect instant gratification and believe that they should never be uncomfortable.  When that mentality overflows into their relationships, will they have the fortitude to build sheds?  Will they just expect someone else to build it for them?  Those uncomfortable moments are the times when you learn the skills to cope with the bigger moments life is going to throw at you.  That silly shed wasn’t actually the hardest thing we have ever dealt with in our married life, but it did prepare us for those days.  It let us know that we could handle them together; because somehow even in the middle of hating that shed, we had still made each other laugh at the ridiculousness of the moment.  That is something we can still do today.  Maybe not in all circumstances, we definitely face some dark moments…we just hold each other through those.

The point is this: whether it be a spouse, a friend, or a family member, we all need someone that we could build a shed with if the time called for it.  We need to build those kind of deep relationships; instead of 1,000 superficial acquaintances.  Focus on strengthening the relationships you hold dear.  Be present in those lives instead of worrying about what all of your acquaintances are up to online.  Pay attention to more moments when they are happening instead of photo ops for posting online.  Look up, look out, and be there, where ever you are.  The people you are with are the people who deserve your attention.  I think in this day and age, we are all guilty of this.  Let’s just try it and see what happens…if you are with a living, breathing person, don’t check social media.  You have a friend right there!  I wonder if we will all feel a little more valued and special to the people we are with…a little more listened to…a little more connected….I just want my friends back.  Don’t you?  To be able to go to lunch with someone, and actually just have lunch with them?  Connection, that is how you build a shed.

So, to end my long story, we finally finished our shed…in a weekend.  We stayed together and were actually stronger in the end.  It did take a while before we really thought the whole incident was funny.  Now, years and so many construction projects later, we find our antics quite humorous.  We must have looked quite foolish, but very much in love, to put up with each other the way we did.  Today, I hope we don’t look as foolish when things come our way, but I do hope we look every bit as in love.

Hold on tight and build a shed, you’ll thank me for it someday.

Ugh, Mother’s Day!

OK, hold on…before you get all irritated, hear me out on this one.  I LOVE Mother’s Day, but I also dread Mother’s Day.  Every year, I endure this inner battle that my psyche is waging with itself; and it can get pretty brutal at times.  I’m not going to lie, I have had some dark years.

When I was a little girl, we always went and ordered my mom a fresh flower corsage to wear to church on Mother’s Day.  White, since her own mother had long since passed.  I loved this simple act of choosing which flower she would like and designing the corsage.  Going back to pick it up and “hiding” it in the refrigerator.  Somehow I always thought she was surprised by this gesture; and she always made me feel like she was.  We would buy cards and take her out to eat after church.  Mother’s Day was always a production, but it was an honor.  The favor was always returned in June when Father’s Day came around.

I’ll never forget the feeling I got in the pit of my stomach as my family started to break apart, and my parents stopped doing those little gestures for each other.  I can still remember going to a special horse event with my dad, and realizing that we hadn’t ordered a corsage for my mom yet.  I panicked and called the florist from the event.  I cried and cried.  It was that day that I understood that I would have to start celebrating them on my own from then on.  They wouldn’t be celebrating each other anymore or helping me coordinate any more surprises.  I was heartbroken but resolved.  That was the first time Mother’s Day changed for me.

Then years later,  when my mom and I were celebrating Mother’s Day, I was 20 years old.  We had the best day…it was just like old times.  I ordered her a white gardenia (one of her favorite flowers) corsage, I went to church with her, I had bought her a new dress to wear, and we had bought new matching purses.  After church, we went to lunch together.  All-in-all, it was the perfect day.  I would have given anything to have known that was going to be our last Mother’s Day together…she was killed a month later in a car accident.  That changed Mother’s Day for me for many years.  Although I had a Step-mother who loved me, I saw no reason to celebrate Mother’s Day.  I wasn’t a mom and I had just lost my mom.  I just felt dark and empty.  I resented the holiday and everyone celebrating on that day.  I hated the commercials, the Lifetime movies, the cards…I hated everything about that day.  In reality, it wasn’t the holiday I hated, it was my loss and pain.  I resented her being taken away from me too soon.

Then I became a mom myself.  That was probably an even bigger struggle because then I had to celebrate Mother’s Day.  I couldn’t hide from it anymore in good conscience.  It wasn’t fair to my kids to not let them celebrate me.  At first, I was there as a shell, but I was still obviously miserable.  I was still so stuck in my own misery that I was unable to receive their love and appreciation.  They felt it, I felt it.  It sucked.  One day, I just really got sad about my mom and missed the woman she was.  I was thinking about who she was and who I was missing out on…it dawned on me as I sat there; she would be really mad at me for wallowing in my sadness when there was all of this goodness around me.  She used to always say the craziest things, sometimes they were really prophetic.  One of the things she used to say was, “You can’t see past the stick on your face.”  If you just focus on what is right under your nose, the problem closest to you, you’ll miss the forest.  Sometimes, you have to get past yourself in order to move on.

Please don’t think that this means that I don’t miss my mom every single day.  Some days, especially the difficult days, I can’t imagine how I’ve lived without her for 20 years.  I’m just saying that I would miss out on so many daily blessings if I focused more on what I lost in her than what I have been given all around me.  Yes, I was robbed when she was taken too soon.  I have also been blessed time and time again.  She would not want me to focus on her loss more than I focus on my blessings.  She would never want to know that I am so sad about losing her that I can’t enjoy my life.

If I learned anything important from my mom that I hope I have passed on to my kids, it is this…Be a friend to the friendless.  Family is who you make it.  There were many times over the years when our friends were our family.  I have seen mom’s come in all shapes and sizes.  I have been “mothered” by friends, friend’s mothers, aunts and grandmas… I have myself mothered those I have birthed, those I have acquired, those I have wanted, those I have borrowed, those I have visited, those I haven’t even known… Trust me, you don’t have to give birth to celebrate or be celebrated on Mother’s Day.  Yes, it is a special day that should be held sacred for those of us that love us some kids and take time to do some raising.  However, some of us have lost those special ladies in our lives and some of us have lost our kids…they still deserve to be celebrated and loved on.  We all come from somewhere, and sometimes these special days are painful for whatever reason.  So, follow my mom’s example and just be a friend to the friendless.  Love on someone who might need loving.  Maybe they are missing someone they’ve lost.  Maybe they are missing someone that they’ve never been able to have.  Either way, they could probably use some love.  I’ve got 3 amazing kids that tell me how great I am and I still feel the hole that my mom leaves.  If you are blessed to still have your mom, hug her extra tight.  If you miss your mom too, hug your kids extra tight.  Just don’t hide and wallow…I know she wouldn’t have wanted that.

I was blessed for 20 years with my mom.  I have those years to look on and pull from to make me the kind of mom I want to be.  I ask myself, do my kids have that in me?  I need to be living the life that would make her proud.  The best way to keep my mom close is by living a life that would make her proud.  I’m not going to do that by living a life of resentment because she’s not here.  I can see her in my kids, I can see her in myself, and I can see her in little memories all around.  Most of all, I hope to honor her this Mother’s Day by being happy and enjoying the best day with my kids.

Happy Mother’s Day!

Finding the Purpose

I’ll be real honest…I’ve been struggling lately.  There have been so many days that I have started writing something and walked away mid-sentence unable to put what I’m feeling into words.  I just don’t know how to wrap my brain around all of the thoughts and emotions swimming around inside of me right now…But at the same time, I feel this overwhelming call to speak out and tell our story.  So I’m just going to go for it…Please forgive all of the no-doubt countless grammatical mistakes and such.  I just hope that you are able to see past the words on the page and really hear the words that are in my heart.

God has given me one of the most remarkable girls with a life that has been a constant uphill climb.  Despite all of her tests and trials, she wakes up each day with a happy heart and a song on her lips.  I promise that a day doesn’t go by that this girl isn’t singing.  Her strength is both inspiring and overwhelming.  She has gone through more in her childhood than most people will in their lifetimes.  She faces each and every new challenge head-on with purpose.  She really believes, as do I, that God gave her this path for a reason…we don’t have to know what that is right now, He will reveal it in His timing.  I do know that I don’t know if other kids her age could handle all of this the way she has.  Doctors are always waiting for her to be depressed or angry, full of self-pity and resentment.  The day may come, and we would cross that bridge with her; but so far, so good.  She has an old soul.  Somehow she just gets it.  That makes me sad for the lost innocence of a carefree childhood, but I have to trust that we will find the purpose in all of this someday.

She has been sick from the very beginning…she really doesn’t know anything different. Our difficult road with doctors began with that first pediatrician that told me she was too young to really have asthma.  She wasn’t.  First experiences with powdered cereal were fun – with allergic reactions that the doctors told us couldn’t be “real” allergies.  Finally, when we started jarred baby food, her reactions were severe enough (with her skin in a constant state of being cracked and inflamed) that they said we should just avoid those foods.  Still unconfirmed allergies.  We began adding foods to that “Avoid” list until it just became categories…All berries, anything with Red Dye, that sort of thing.  To prevent any accidental consumption, she had to be taught from the get go what her allergies were and what types of foods and drinks that meant she had to avoid.  The saddest part of this process was the reaction she got from ADULTS at events when she would politely turn something down.  She wouldn’t go into detail about why she didn’t want it, she would just say, “No thank you” so as not to call attention to herself.  Later on, we started taking her a personal treat to parties to quietly have so that she didn’t have to completely miss out on the celebration.  This was also a nightmare to navigate.  People would accuse her of being a picky eater.  People said she was rude for not eating the cupcake/cookie/cake.  Others just tried making jokes about her being difficult or high maintenance.  Even those closest to us have made hurtful comments about going the extra mile to try keeping track of her laundry list of allergies.  Believe me, I know how difficult and frustrating it is trying to find things she can have; we live with it every day.

As her allergies and asthma were worsening, she was also starting to get sick with strange things on a rather regular basis.  If even one child at church or gymnastics had something weird, she was going to get it.  Then she started preschool.  This was when it got real.  I don’t think she has felt well since.  Honestly, I’m not sure she even knows what that feels like…to really feel well.  School meant constant exposure to sickness and germs.  You see, you might sit in a room and not even notice a sneeze.  You just say “Bless you” on autopilot and never even leave your trance or look up from your Facebook.  I can’t.  Every sneeze, every sniffle, every cough is a potential threat to her.  I sit there trying to diagnose those sniffles and coughs in my head.  Does that sound contagious or like allergies??  Did they properly cover their mouth and nose when they sneezed/coughed?  Every scraped knee, splinter, turf burn leave her susceptible to infection.  I don’t mean an infected wound requiring some ointment.  I mean a systemic infection requiring IV antibiotics and probable hospitalization.

On our road to a diagnosis, we have been on one crazy roller-coaster of emotions.  We have been told that she had Cystic Fibrosis.  We had to wait days to schedule the test and then when we got there, the tech explained (in front of her) that the test was just a formality because she definitely had CF.  We waited another 4 days, over an excruciating weekend, only to find out that she doesn’t have CF.  We were told that she had Lupus. Another long wait for results…she doesn’t have Lupus either.  She does have a cyst on her heart that we had to wait a month to find out if she was going to need open heart surgery to remove.  Countless other times we have gone for testing of various horrific diseases, requiring painful testing procedures, only to find out what she doesn’t have.  So many nights rehearsing in my mind what life would look like if the test came back positive.  Only to end up in another dead-end, facing another Mack truck, with another possible devastating diagnosis and testing.

Finally last summer, a diagnosis…Primary Immune deficiency Disease (PIDD) and more specifically, Common Variable Immune Deficiency (CVID).  I had never heard of that before.  Well, come to find out, I had actually seen some of the Jeffrey Modell Foundation commercials but had never really paid them any attention.  They didn’t apply to us, right?!  Wrong.  That was our answer.  This would be the beginning of another long journey.  For those of you, that are like I was (in the dark), Primary Immune Deficiency (PI) is a gene mutation that affects the B-cells and T-cells responsible for fighting infection and producing antibodies.  This essentially means that part of the immune system is missing, or not working properly, from birth.

PI comes in all shapes and sizes since no two patients are exactly alike.  PIDD is considered a Rare Disease by the World Health Organization.  Only about 1 in 25,000 people, like my daughter, have CVID …and not many of these are kids.  Unfortunately, doctors are trained to not go looking for the rare.  They have a saying in the medical community, “When you hear hoof beats, think horses, not zebras”.  They are taught, as a general rule, to focus on the likeliest possibilities when looking for a diagnosis, not the unusual ones.  The fact is, zebras do exist.  Sometimes, those hoof beats aren’t horses at all.  The PI community has adopted the zebra as their mascot to represent this shift in thinking.  The other cool similarity is that no two zebras have the same exact stripes; just like no two PI patients have the same exact symptoms.

We struggle with the medical community’s lack of understanding when it comes to Primary Immune Deficiency.  Some doctors are still waiting for the horse to show up because they have no explanation for the zebra that is sitting before them.  Others are worse because they claim to be well versed on PI, but then they continue to try forcing CVID into the same neat little boxes that they know how to deal with.  I can’t tell you how many times we have heard that she couldn’t possibly have _____________ because her labs came back normal.  I have to remind them that perhaps with her CVID, the numbers would be different or skewed from normal values.  Sometimes they look again, sometimes they stick to their opinion, and sometimes they are wrong and she pays the price.  Delay in treatment when she is getting sick, only means that whatever is attacking her has more of a jump start.  That usually means, heavier antibiotics and steroids will be required…never fun.

I often find myself questioning whether or not we are doing the right thing and listening to the right people.  I mean, when you are trying to come in out of the dark, how do you know where to start looking for the light switch?  I had often prayed for people who had chronically ill children.  I remember thinking how strong those kids and their parents must be to endure; wondering if I could ever find that kind of strength.  I remember seeing scenes in movies that would depict a mom having to do something that caused her child pain for their own well being.  I even remember saying that I didn’t think I could ever do that…I didn’t think I could ever hurt my own child; even if it was for their own good.  Well, it isn’t easy, but I’ve learned that you’ll do whatever it takes to make them better; and you just pray that they understand.

Now let me tell you about my epiphany.  We were at the hospital one day…one day that was the third day that week for more testing.  I remember that day like it was yesterday. We were sitting playing with our Story Dice; making up stories (as usual) but on this day, her stories were sad and dark.  No matter what I tried, not one of her stories had a happy ending.  Frog waiting for a kiss from the princess?  Nope, frog gets eaten by something and never gets his kiss.  That kind of thing.  I was sad for the first time in a long time. Please understand that if you take nothing else away from reading this, hear this…we truly enjoy our life.  We are happy (most of the time) and joyful (all of the time).  We have the most amazing family, and we honestly love being together.  I’m not sure if other families genuinely enjoy each other the way we do, but I certainly hope so.  We don’t wake up and count spoons, we don’t make sad videos with flashcards, and we don’t focus on what life can’t be…This is why her sour mood really stood out to me.  She is always happy…maybe not ALL day every day but she is happy every day.  She finds something that makes her happy in just about any situation.  If you know her, I bet that you would agree.  But not on this day, at this moment.  As I sat there trying to figure her out, I watched a mother wheeling her adult son out of the hospital.  He was wearing a mask, just like my daughter, to protect them from infection.  He was just a shell of a man and most likely had cancer.  I was heartbroken for her.  I was angered at the injustice of her life…having to watch her son suffer like that.  Then like a ton of bricks, my epiphany…I suddenly, for the first time noticed how the other people waiting in the area were looking at me.  They were looking at us with the exact same look I had given that mother and son.  I saw my daughter in their eyes and my heart broke.  She sat pale and sunken in the wheelchair, curled in a ball, swallowed up in her baggy sweats, wearing a mask.  I wanted them to look past the mask and see her strength and medical maturity, her acceptance of the road God has given her to travel, her amazing personality and sense of humor…I wanted them to see that she doesn’t go around feeling sorry for herself.

Do we all wish this away?  Absolutely!  It is a difficult road to travel when those around you can’t truly understand your struggles.  The road is lonely and frustrating.  We feel like we spend a great deal of time trying to explain ‘How she’s doing’ in response to a polite inquiry that just doesn’t have an easy answer.  People mean well,  most genuinely care, but they have no concept of how deep their question goes.  In their minds, she was sick last week…Is she better?  Let me see….yes, she is over what ailed her last week but she’s not better.  They are still waiting for her to be well…Please understand that currently there is no cure for PI; there are treatments that can make the disease more manageable, but no cure.  On top of that, infections and numerous other complications are pretty much a given for PI patients.

We live life with a chronically ill child.  To have a single week in a month without some kind of medical appointment is rare.  She has her weekly infusion one night a week.  A bucket of medications is perpetually on our counter.  I can’t remember the last time we left the house without a medical bag.  But this is just our life.  This is our normal.  This doesn’t define her, or our family.  We are learning, which requires  time and adjustment.  She lives as normal a life as is safe and possible for her…she goes to school, sings in the Honor Choir, plays volleyball, takes piano lessons, and lives in our pool pretty much May through September.  Like I said, we don’t go through life focusing on what she can’t do.  We make the things we can do that much better.  We don’t go to movie theaters anymore; these days, we wait for it to be available on iTunes, and then we have the best family movie nights.  We like to point out that at our home theater, the candy is better, the popcorn is better, the chairs with blankets are better, and we can pause the movie for bathroom breaks, but best of all…our great Danes get to enjoy the movie with us.  I won’t even get into that sticky floor at the theater…

So, what is my point in writing all of this?  Well, if you stuck with me and read this far, I hope you have a better understanding of what is going on with her and with our family.  I need y’all to understand how hurtful it can be to be judged by the “normal” standard when we are living an “extraordinary” life.  For instance, we have pulled back from our church attendance, not because we wanted to, but because being there was literally making our daughter sick.  We can watch the sermons online…it isn’t the same and we miss the fellowship, but this cuts down on her exposure to infection.  The judgment from fellow church members has been painful.  I often wonder, if in my shoes, would they be able to sit and focus wholeheartedly on a service knowing that they were putting their child at risk every minute they sat among the people?  Would they go anyway, the way they think we should?  My biggest struggle is with prayer requests… I know that sounds awful but please let me explain.  I would give anything for a miracle of complete healing…because please understand that is what it would take for her to be healed; a miracle.  Do I believe that God could heal her if He wanted to?  100%  On the other hand, we can’t live our day-to-day life expecting a miracle.  Before you try to correct my approach, please hear my heart.  My daughter is currently sick, she requires weekly treatment to keep her as well as she isn’t, and we must live with certain precautions to protect her from infections.  Telling us to live each day as if she has been healed, just isn’t medically responsible.  I equate that to telling a mom that she shouldn’t treat her son’s cancer because they should be expecting their miracle.  Do I still pray for one?  Yes!  I also understand that healing might not be His chosen path for her.  My prayer for her, and for our family, is for new research and understanding so that a cure can be found.  I pray for protection and her health, and I pray for new treatments to be discovered that would improve her quality of life.  Not waiting for my miracle is NOT a lack of faith on my part.  If you want to believe only in miracles of complete healing, I think you might be missing her miracle.  She has strength of character and compassion for others that only comes from trial.  She has been an amazing witness of God’s strength and faithfulness to every medical professional she has encountered, and that is a lot.  God has a huge plan for her life.  Put yourself in our position, could your spirit handle waking up every day disappointed that it wasn’t “miracle day”?  Realizing that God didn’t answer your prayer…I’m not trying to tell God the answer, we are living and celebrating the life He has chosen for us.  So please pray for her; but pray for comfort, her health, research and a cure, her quality of life, her spirit…and a miracle.

After reading this, I hope that you are curious to learn more about PI and CVID.  You may be wondering how you can help show support…Donate plasma if you are able.  My daughter’s weekly infusion (SCIG) is immunoglobulin replacement therapy.  Immunoglobulin (IgG) is the part of blood plasma that contains antibodies.  Just to give you an idea, her small dose takes 8 plasma donors a week to produce.  So that is at least 416 plasma donors a year just to treat my daughter.  Blood and plasma donations help the PI community immensely.  You can find some great information about Primary Immune Deficiency, CVID, and plasma donation at the following websites:

http://www.info4PI.org (Jeffrey Modell Foundation)

http://www.primaryimmune.org (IDF – Immune Deficiency Foundation)

http://www.donatingplasma.org (Information about Donating Plasma)

I think my last point to all of this is friendship.  In our busy world, we have started using, “How are you?”  as a synonym for “Hi”.  Since I lost a few people in my life to suicide, and all of these struggles in our life have intensified, I have purposely tried to stop doing this.  If I don’t have time to stop walking, look you in the eye, and REALLY listen to how you are doing, then I will just say “Hi”.  We need to watch the weight of our words…if you ask me how I am doing, I’d like to feel like you care to hear my answer.  I don’t want to say, “Fine” or “OK”, when I’m really not.  I understand that we are all busy…so just don’t ask if you don’t want to hear how I am.  It’s really OK not to ask every time we see each other.  Just understand that I am at a place now where I feel we, as a people, need to be seeing each other and trying to show more compassion.  If I ask you, I really want an answer.  If you ask me, be prepared to get the real answer.  Deal?  In this same vein, if you don’t fully understand something that we are going through, and you would like to, please just ask.  I’m certainly not a doctor, but I do feel like one some days.

Thank you for reading this and for your love and support.  I sincerely hope that you have a better understanding now of where we are in our journey.  Please follow her example, always look for something that makes you happy every day.  We appreciate your prayers and your friendship…we are so blessed by our family, friends, school, and church community.  If I have hurt anyone’s feelings with any of these words, please forgive me, that was never my intention.  At no point was I thinking of any specific individuals when writing this, only circumstances and events.  We love you all.

Look out for the zebras in your life, they truly are special.  If you are a zebra, kudos to you for living each day zebra strong.

Thank you.