The Island

I keep asking myself, "How the fu@$ did I get here?"

Seems harsh, but true.  It is an incredibly loaded question weaved into one large web of chance and circumstance.  It would take me quite some time to summarize the course of events that lead me to this point.  I have a story to tell and I think in a very unusual way God has put it on my heart to do so.

I feel as if I have been out at sea too long to remember where I departed from and after years of trying to find my way back, I have reluctantly abandoned the dream of returning home.  Instead, a desert island has come into view and with it a new life has emerged.  While it is hard to relinquish the familiarity and comfort of life on the mainland, it is time to start navigating the rocky terrain of my newfound home.

It is unfamiliar and leaves me feeling lost and helpless much of the time, yet I have reluctantly come to accept it as my new home.  The island is foreign and desolate, but it is is filled with such beauty and wonder it leaves me in awe.   As with all new beginnings, there are underlying feelings of uncertainty and trepidation, but in those uncertain moments, if I am quiet enough, peacefulness washes over me.

This is my life.

In a strange twist of fate, I have landed here, in a foreign place, where I would have never imagined myself living.

When I take time to reflect on the path I've taken through life, I can now see why all of those choices and opportunities were placed before me.  A love of children lead me to major in early childhood education.  St. Ambrose's ECE program included special education, so throughout my four years of college I was trained in regular and special education.  Special education was not on my radar, so had it not been part of the degree program, I would never have pursued it.

My ultimate goal was always to be a kindergarten teacher, but when I ventured down to Texas to interview just a few weeks before school started I found myself presented with an opportunity to teach PPCD (Preschool Program for Children with Disabilities).  I was so grateful to be given an offer I took it without hesitation.  It certainly wasn't what I had planned, but I dove right in and never looked back.

I was fortunate to receive a lot of training while working for that district, so I gained a great deal of confidence and ended up loving my job.  Many of my students had autism and very challenging behaviors.  They were a puzzle, but over time I was able to put many of the pieces together and help them overcome some of their challenges.  It was exhausting, but rewarding work and I spent five years teaching in self-contained special education classrooms.

While I left the classroom behind nine years ago when I began staying home with the kids, I have found myself back in that life.  The classroom is our home and the child is mine.  This time I am unfamiliar with the disability and the challenges it presents.  I am back to being that first year teacher who poured her heart and soul into researching and strategizing how to reach and help my kids.

I will be the first to admit, I didn't see this coming.  Because I was trained in special education, I was hypersensitive to the development of my children.  When I was pregnant I breathed a sigh of relief every time the ultrasound results showed our children had no risk factors.  When they were born and given clean bills of health I breathed another sigh of relief.  I watched them carefully through their toddler years and breathed yet another sigh of relief when they met their developmental milestones and showed no signs of autism.

I naively thought we were in the clear, so to speak.  Our son had challenging behaviors, but like most parents we chalked them up to the terrible two's and three's and him being an active little boy.  When he began to clear his throat all of the time, we chalked it up to allergies.  When he began to uncontrollably grimace and cock his head to the side we figured it was a phase that would pass.  Until it didn't.  When more noises and uncontrollable movements began we took note.  We went to the doctor, we were told to observe, and if we hit the year mark where these didn't subside, we would talk.  Well, they didn't subside.  In fact, they became worse.  We went to Iowa City where he was officially diagnosed with Tourette Syndrome.

With that diagnosis everything fell into place.  Tourette Syndrome is far more complex than tics.  The sleep problems, behavior challenges, aggression, rage, explosiveness, ADHD, defiance, obsessions, compulsions, impulsivity, anxiety, worry...it is all related and part of this disorder.

It has lead us to the island.  This foreign, desolate, yet beautiful island.

I am beginning to learn the lay of the land.  There are landmines and volcanoes everywhere just waiting to erupt.  There are raging, violent storms and days that never seem to end.  It is simply indescribable and there is no map available to help navigate the treacherous terrain.  It is survival mode, living minute to minute.

It is lonely, isolating, overwhelming, and frustrating.  It is simply indescribable.

We have embarked on a new journey.  One where very few understand what we are up against and how challenging it is day in and day out.  Where there are few local resources to help support us and him.  Where it is rare in schools which leads to very little understanding about the disorder and the comorbidities that accompany it.  Where very few local doctors specialize in this disorder.  Where there is so very little help.

It is truly a desert island, but that doesn't mean we will always be alone.  We will try to connect with others who are also embarking on this journey and find the help and resources we need to adapt and manage this to the best of our ability.

This may very well be the most difficult test I have endured.  All of the stops along the path of my life in the past 19 years have lead to this.  I have been put on this island for a reason.  It may not be by choice, but there is no lifeboat to escape on.

Time to get to work.  Time to start settling in.  Time to get sh*t done.


  





 

  



  

Above All, Choose Kind

I recently finished reading Love Warrior by Glennon Doyle Melton.  If you haven't read Carry On Warrior or this, you're missing out.  She's a straight shooter who had serious struggles for much of her life, lost herself along the way, yet in the end persevered.  What I admire most, though, is her willingness to share her story with others without shame, even though it's messy and uncomfortable. She has a fantastic blog, Momastery, and freely speaks her mind on so many of today's most controversial issues in a loving, motivating way.  

She uses her platform to encourage people to be tolerant, fight for what's right, and above all, be kind to and love one another...and ourselves.

When I put down her book, I felt inspired, encouraged, and validated.  We have made difficult decisions for our family as of late and choosing to not remain silent about our rationale has led to some unexpected fallout.  At first I was hurt, but over time I have come to see the situation for what it is.  Sometimes someone else's messy truth makes people uncomfortable. 

Perhaps my experience, my voice, will reach into the heart of another mama out there who is struggling.  Maybe she will no longer feel alone and find comfort in knowing there are others out there fighting the good fight right alongside her.  Why should I sit by and be silent?

Seeing the world from someone else's perspective can be difficult.  It seems we are so wrapped up in our own lives that even considering someone else's circumstances may be different is a challenge.  I'm not sure it's ever been quite as evident in my lifetime as it is right now.  Turn on the news, read an editorial, simply look at what's going on around you.  Tunnel vision is everywhere.    

Kindness and compassion have been replaced with intolerance and apathy.  What would happen if people would step back and suppress the urge to argue or attack and simply say, "I hear you.  I am sorry."?

People attempt to tell others how they should feel and belittle and judge them when their opinion differs.  Why do people believe that is okay?  Individuals are entitled to feel emotions and come to their own conclusions based on their personal experiences.  Why do whites feel compelled to discredit how the black community feels?   Why do the middle or upper class feel the need to rebuke and dehumanize people living in poverty?  Why do people attack others who choose a different lifestyle than their own?  Why?  

What makes this even harder for me to wrap my head around is this intolerance isn't limited to behavior among strangers.  This happens in families, with friends.  It seems that nowhere is safe anymore and it is disheartening people spend so much energy bringing people down rather than building them up.    

What happened to the village?  The village where people lifted each other up, unselfishly helped each other, steadfastly supported each other?  Where did it go?  As of late, it seems to have been wiped from existence.

Mamas.  I have a plea for you.  Lead by example.  Those little eyes are watching and when we are expressly showing our intolerance of others, we are teaching our kids to do the same.  When we are brushing someone's feelings aside and trying to impress our feelings and opinions on them, we are teaching our kids to do the same.  When we are outwardly unfairly judging others, we are teaching our kids to do the same.  Choose kindness.  Choose compassion.  Choose love.            

Glennon and I are kindred spirits.  I have never been one to be silent.  I am not ashamed to use my voice.  I have a story to share.  I'm sure you do, too. 

  

Perception vs. Reality

Truth.

How do we distinguish between what is actually true versus what we perceive to be the truth? 

How do we sift through the gray, hazy uncertainties of life to find the crystal clear sky?  

We listen.  We wait.  We seek answers to the questions that are causing us to feel unsteady, uncertain. 

If we're patient, persistent, one day we may be blessed with clarity. 

After years of uncertainty and haze, the fog has begun to life.  Each day the difference between perception and reality is slowly becoming more clear.  The truth has set me free and the elephant that has been crushing my chest for so many years has finally begun to retreat.  I am able to view life through a different lens and the peace and acceptance that accompanies this new perspective is welcomed with open arms.

So what changed?  

In order to understand this newfound view, we'll have to backtrack a bit.

Nearly four years ago there was a not-so-subtle shift in our family dynamics.  Our younger son learned to climb out of the crib while we were away for Thanksgiving and while this may seem like a right of passage, it marked the beginning of a very long and hard downward spiral.

It began with sleep problems that plagued us for nearly a year until our pediatrician suggested giving Melatonin a try.  Each and every night our two-year-old would fight bedtime for hours.  It would be 9 or 10 o'clock before he would fall asleep and each morning he would wake for the day between 4-5 in the morning.  He would not nap unless I strapped him in the van and drove around for hours.  It was exhausting for him, us, and our other kids. 

Soon after he began to exhibit extreme behavior issues and the rest, they say, is history.

For as long as I can remember I have loved children.  I was the first in line to babysit whenever an opportunity came around.  I had my career path chosen long before I ever graduated from high school.  Teaching young children with special needs came naturally to me and starting a family shortly after we got married was the obvious next chapter in our life.  

I was pretty confident I would be a great mom.  I'd cared for so many children over the years that I was not the least bit intimidated to have my own.  Having a large family was my dream and I was blessed to see that dream come to fruition.

My pre-kid self understood parenting would not always be sunshine and roses, but I was not prepared for how hard it would be once they arrived.  The endless nights of little sleep, chronic ear infections, reflux, and feelings of isolation took their toll, but there was an even larger challenge looming around the corner.  I was completely unprepared for the reality of raising a child with significant behavior challenges and the impact it would have on our marriage, other children, and me.

We love our little guy to pieces.  He has a megawatt smile, a killer hug, and is smarter than a whip, but his challenges over the last four years have resulted in a frustrating, exhausting, overwhelming, anxiety-producing period of life filled with many, many questions and very few answers.

Until now.   

For four years I have been buried in the trenches.  Feelings of helplessness and despair have consumed me.  I have thrown my hands in the air and said, "I give up" more times than I can count.  Nearly everyday a volcanic-like eruption would occur and at times it was debilitating.  It wore me down and somewhere along the way I lost confidence in my ability to parent.

I have felt like a failure as a mother and the shame that has accompanied those feelings has almost been unbearable at times.  I have wondered why I, the teacher with special education training, could not devise a plan to help improve the quality of life for all of us.  Why could I not help my son?  Why did nothing work?

I have spent years feeling embarrassed at the store, family gatherings, church, and everywhere in between because I could not "handle my child."  I've felt judged and inadequate.  People have offered their wisdom and advice, but it just never fit the needs of our boy.   

Each day I would wake feeling anxious and defeated before my feet ever hit the floor, because I knew the day would be filled with challenges.  Some would be minor, but many would be all-out tantrums, some filled with so much aggression it would be hard to manage.  It would impede my ability to run errands, ride in the van without complete and utter chaos, or to simply relax at home.  I was always on guard waiting for the next eruption to come and day in and day out, it always did. 

But now the tides have changed.

We finally have answers.  We finally have a cause.  We have finally begun a treatment plan.  

Have we seen any significant changes yet?  No.  In fact, some days it's worse, but our mindset has changed.  We finally have the truth and the truth has set us free.

After four long years of doing everything we could within reason to correct the perceived "problem" we can finally rest.  We can refrain from trying to mold him into something he is not because we feel like we are failing him.  Instead we have embraced the truth and been liberated to accept him as the amazing, energetic, bright boy who has some unique challenges.  

The shame and embarrassment has begun to wither away.  We have not failed as parents.  We cannot control his behavior and while it poses many challenges in our daily lives, it has become easier to accept now that we understand the root of the cause.  It has given us the freedom to let the cards fall as they may.  We don't have to swim against the current any longer.

We are able to set boundaries for our family and understand that "pushing through" is simply not an option.  It will only lead to frustration for all of us and our job, as parents, is to determine what is the best yes for our family.  We can do this freely and without guilt, because we have a much better understanding of how our decisions impact him and our family.  Guilt, obligations, pressure be gone.  In the end, it is the well-being of our family that matters the most.     

We can help our other children understand and be more patient and loving with them.  This is also a challenge for them and they handle it with such grace most of the time.  

I can forgive myself.  I can let go of the shame and guilt and move forward with confidence.  I have not failed my boy or my other kiddos.  I love them and do my best day in and day out to help them succeed.  Some days may look less than impressive, but it is all I have to give. 

Raising a family is not easy.  It is a messy, imperfect, exhausting venture, but the all-encompassing love I feel for those kids and my desire to protect and nurture them makes it all worth it.  I cannot change the past, but I can give it my best each and every day moving forward.  I can lock up those feelings of inadequacy and helplessness and toss away the key.  

I am enough.  My little boy is enough.  We are all enough.

  

The Inevitable Curveball

I love baseball, particularly the Chicago Cubs.

You'll find me tuning into nearly every game all season long and I love every minute of it.  Baseball is a game of details and discipline.  It is filled with flashy players who get paid the big bucks and receive major press coverage, yet if you look closely, you'll find a quiet, humble player who may be the real difference maker on the team.  As you near October, that unsuspecting player may finally rise to the spotlight and surprise everyone.

While riding in the shadows of the big-name players, the humble, quiet pitcher has gone out and dominated nearly each and every outing throughout the season.  His pitching isn't overpowering, yet he finds himself in the Cy Young mix, while sailing through the season feeling little pressure other than being on the most promising Chicago Cubs team in decades.  There were no great expectations riding on his back to dominate, yet he has.

It is a truly remarkable, inspiring story that has unfolded this year.

Life is a lot like baseball.  Some seasons our performance exceeds our expectations and others fail to live up to the hype.

It is filled with loud, flashy people who love to be in the spotlight and those who would prefer to slide by as unnoticed as possible.  So often, the quiet ones end up feeling the most fulfilled and leave a lasting, positive impact on this world.  The only expectations they have to live up to are their own and they are able to fulfill their purpose while feeling little pressure as they quietly move around relatively unnoticed.

Life also has a way of throwing us the inevitable curveball from time to time.

As parents, we have found ourselves in a season we weren't quite expecting.  That inevitable curveball has been thrown and while we saw it coming, it doesn't make it any easier to handle.

On Friday, the doctor confirmed our suspicions regarding our son.  In a way it was a relief to have the diagnosis on paper, yet as his mama, it hurts my heart to know it is true.  So much of what we have endured over the past four years makes so much sense now, but it leaves me with feelings of guilt and helplessness just the same.

While it was a tough pill to swallow, I am so grateful that his struggle is not one that is life-threatening.  It is simply a very big, exhausting, frustrating, complex challenge.  We will all work together as a team to manage the challenges, work to help him succeed, and ensure that he feels loved and special every single day.  Home will always be safe, no matter how ugly the world outside our doors may be.

Dwelling on the past will do no good, but accepting that life is truly lived one day at a time will help us appreciate the little things that much more.  This is just the beginning of a very long journey, but it is one we will walk together as a family.  Our kiddos will surely learn valuable life lessons regarding tolerance, acceptance, and perseverance and hopefully grow to be a light for both their brother and their peers who may need someone to notice how truly special they are.

We are a team and much like that quiet, humble Cubs pitcher Kyle Hendricks (who ironically almost threw a no-hitter tonight which began well after I started writing this), we'll go out each and every day and quietly go about our business determined to do our best to help our little guy become the best version of himself.

He's a bright, innovative, persistent, loving little boy and I can't wait to see him have his breakout season one of these days.

It won't be flashy, but it will surely be memorable.  

  












    
 

  

The Number Flips Again

Today marks the 37th year of my journey in this world.  It seems impossible that I've reached this age.  I guess I always thought I'd feel so much different as I aged and while I know there is a vast difference between where I am now versus 20 years ago, I'm just not sure I feel 37.

Somehow I've been married for almost 11 years and have four beautiful kids, but it seems like just yesterday I was packing up and beginning my adult journey way down south.  In reality, 14 years have passed since I took that leap of faith, but it will always hold a special place in my heart.  That decision paved the way for my future and is a huge reason I am where I am today.

That experience taught me to lean into the uncomfortable rather than shy away and it is a lesson I have carried with me ever since.  In recent years, that lesson has been brought to the forefront of my life and this year will be no different.

As a gift to myself this year, I am making some changes in how I manage my time and the activities I pursue.  My family and non-profit will be the recipients of the majority of my time.  As we begin our fourth year of operation with From Cover to Cover, some major programs have been launched that will touch hundreds of kids.  It is going to be an exciting year and by year five, we'll be even bigger.  This is a huge accomplishment and one that fills up my bucket time and time again.  The road is never easy and I have to step out of my comfort zone quite often to get things done, but in the end I enjoy the challenge and have overcome many fears in three short years.  My heart belongs to this organization and I will be devoting a tremendous amount of time to ensuring these programs are a success.  I cannot wait for this next step to begin and love that I get to work alongside a few of my very best friends on this journey!

Our family is beginning an exciting new chapter in life soon and though there may be bumps in the road, we are all very excited.  This transition has prompted me to really think about what is important in life.  My personal goal for this next year is to focus on the positive and engage in activities and relationships that feel good and bring joy and fulfillment to my life.  I want to do my best to avoid time-sucking activities and negativity.  It is hard in this no-filter, go-go-go society, but being closer to my family and settling into a new community will likely leave me with plenty of opportunities for positive engagement.

To do this, though, I have to break some bad habits.  The biggest bad habit?  Social media.  It is a great tool, but so many times over the past 8 years or so I have wanted to break up with my Facebook account.  My time could be spent in much more productive and positive ways than flipping through that damn newsfeed.  As a gift to myself, I began my break-up with the time-sucker this week.  While I would love to do away with it all together, I need to utilize it for From Cover to Cover and my business and I enjoy being able to easily stay in touch with my family and close friends near and far.  Weaning down that account to one-third of what is was produced quite a bit of anxiety, but once it was done it was a relief.  Welcome back precious time.  I will use you wisely!

As humans, we are a work in progress.  Each year I become more and more aware of what is important and who I should spend my time investing in.  My family will always come first and I am blessed with a loving, supportive family circle.  I have also found that serving others through the non-profit brings the most fulfillment to my life.  I feel blessed to be able to recognize this and hope to spend this year focusing on what fills me up and letting go of what drags me down.

Cheers to 37!  (Only 13 years until 50!).

  

A Big Change

This summer has been filled with ups and downs.  We had some wonderful family vacations, fun adventures, and celebrated some great family milestones:  birthdays, weddings, new babies.  We made a lot of great memories and did our best to enjoy the lazy days of summer.

We also struggled through many days and spent a lot of time contemplating what the future would hold for our family.  It has not been an easy road and we have spent a great deal of time weighing the pros and cons, but at the end of the day we feel we have finally come to the right conclusion to fit our needs and it requires a major life change:  moving.  We've talked about it for what seems like forever, but now it is really happening.

Four years ago we moved to a small town in Iowa.  Back then we naively thought we had found our forever home.  It is impossible to see what the future will hold, but I have learned that forever is a REALLY long time and you just never know what God has in store for you.  In our case, we did not anticipate the challenges that would come with having children who do not fit into the mythical "box."

Our initial experience with our current school district was not a positive one and it remained a challenge for a few years.  Our oldest son didn't fit into the "box."  He has life-threatening food allergies (peanuts, tree nuts, and shellfish if you're curious) and a peanut/tree nut free classroom, as well as other accommodations, are imperative for his safety.  What should have been a simple process was not.  It was a struggle to initially get everything into place and took us into the better part of his second year in the school to finally feel his needs were being met.  Let me tell you, it is not fun to be challenged on your child's rights.  Thankfully there are federal laws in place that protect him.  I was blessed to have an educational background in this department and able to knowledgeably fight for him, as well as others who also have this disability.

Our other son does not fit into this "box" either.  His needs are much different than his brother's and even more complex.  We have struggled at home for many years and school is proving to be no different.  He, too, is protected by law to receive services and accommodations, yet it has been a struggle with the district once again.  In this case, though, we are unwilling to fight the good fight.  It is mentally and emotionally draining and in the end, we want our son to be set up for success from day one.

I wouldn't say that managing life-threatening food allergies is easy, but the measures taken are fairly cut and dry when compared to the needs of our younger son.  In the end, we have made the difficult decision to move to a district where we feel his needs will be met and he will thrive.  Additionally, all of our children will be in the same school, which is of utmost importance to us.  One HUGE added bonus?  We'll be closer to our family whose support is invaluable on this journey.

Our decision may baffle some, but it is not one we have made lightly and has been made with confidence.  What happens inside the walls of a home and behind closed doors can be very different from what the outside world sees.  It is difficult to understand someone else's journey when you are not living it.  I think these statements are true for people in all walks of life.  The greatest gift you can give someone, even if you are not in agreement with their decision, is respect.  It truly makes a difference.

One of the biggest lessons I've learned through this process is to trust your gut.  Your intuition is an amazing gift.  It is so important to remember that what's right for someone else, may not be right for you and you know what?  That's okay.

All of my life I have heard my grandmother say, "To each his own."

Oh how right she is.

The Hamster Wheel

Have you ever felt like you were running round and round and getting nowhere?!

You have?  So glad I'm not alone.

I am in a late thirties haze.

There are so many decisions to be made and paths leading to alternate routes in my life right now I simply don't know which way is up.

There is one thing I know for sure:  I am slowly transitioning from the stay-at-home mom phase into new territory, yet that path and the final destination is such a mystery.  There are obstacles, options, and dreams on the horizon, but I am finding it to be incredibly frustrating and overwhelming to overcome and achieve.

Life would be so easy if we could just set our mind to something and it happened, yet we all know that is far cry from the truth.  It takes hard work and time to persevere and there are always setbacks along the way.  The biggest hurdle is not succumbing to those obstacles.  Finding a way to power through.

These obstacles have me second-guessing and doubting a lot these days.

I'm on that damn wheel and, while it may entertain the hamster, I am finding it to be an anxiety-producing, frustrating time in my life.

Transitioning out of this phase of life seems like a new beginning; one similar to the adventure I embarked on after my college graduation, yet filled with much more uncertainty.  Back then I felt like I could do anything.  Taking a risk was invigorating and fun.  After all, what was the worst-case scenario?  Failure?  Being unhappy?

Way back when it was easy to bounce back.  I was free to try again and the only person who felt any of the repercussions of the fallout was me.  Such a far cry from life these days.

Once again I am restless, wondering what is coming next.  Patience is not my strong suit and the itch for an adventure is waiting to be scratched.  The desire to succeed is prominent.

I'll keep on running, but pray my feet will land on solid ground soon.

The journey continues.