Who’s in Charge?

“Jesus take the wheel” by Carrie Underwood is playing on an endless loop in my head as I contemplate this post (and now it’s stuck in your head too. You’re welcome).  Although it’s a sappy country song, I adore her voice, and I love that chorus. What better response to out-of-control situations in our life? Whenever I feel like I’m in a tailspin, whirlwind or just plain mess, I probably can look down and realize that I’ve totally lost control.  Spending a few days this week at a large gathering of special needs families, I was reminded very clearly about the importance of who is in charge. Continue reading

The “M” Word

As you may know by now, I frequently contribute blog posts to a site called TheMighty.com.  It’s a cool site designed to form a community of individuals with special needs or disabilities where acceptance and understanding take place, and stigma is erased.

They send out a monthly request for stories, with specific topics or assignments.  Recently the topic was “Marriage and Special Needs”.  I immediately began formulating my response to this request – I am, after all, married.  Sounded like a slam-dunk project.

As I wrote, I kept adding more and more disclaimers, apologies, and caveats to the piece.  Among my personal friends who are special moms, several are divorced.  I have witnessed their struggle, their hard work, their perseverence, and their anguish over every challenging decision.  They were so forefront in my mind as I wrote, I was almost ready to cancel the whole thing.  I would never ever want those lovely ladies to think that I was somehow judging their provision for their child as less-than.

But then, it struck me.  I was apologizing for being married.  I was bending over backwards to disqualify my marital status.  And that won’t do.  My BFFs know I love them, and love their parenting, whether single or married, so I pulled out all the apologies,  wrote the article and hit “send” before I could re-read it and change my mind.  Continue reading

The OTHER Special One

My heart today is overflowing with gratitude for God’s gift to me of the most special boy. I can’t even describe to you the stark difference between who I was before he came into my life, and who I am now.  The world would call him my “typical” son.  Oh – that is so mistaken! Continue reading

My ONLY post about golf, ever!

OK, here it is.  The one millionth blog post about Jordan Spieth since Sunday.  What?  you, my dear friends who spent Sunday afternoon doing laundry, DONT know who that is? Well, that’s ok.  Neither did I. Continue reading

You might be Underrated 

Recently while perusing my Facebook stream, I gave my usual overly dramatic eye roll to some quiz about how you rate yourself.  Pa-LEASE! Who has time for those stupid quizzes? Then, of course, I quickly gave myself a mental rating without having to suffer through the quiz. (You now can give ME an overly dramatic eye roll).  Disclaimer – I do not often lack self-confidence – my initial rating was pretty high.  My initial response to any challenge is usually positive and self-assured (you know, glass half full!). But then later that day, alone with my thoughts, I became aware of how poorly I was rating myself on a variety of fronts, throughout the day.  You see when I examine the motives of my heart, and weigh all that I know to do versus all that I do, I can be very negative on how I “rate”. Continue reading

Dear Diagnosis: You’re Fired!

Dear “Chromosome 8p duplication & deletion”:

This letter is to inform you that we have decided to let you go.  We are aware that when the geneticist originally assigned you to our family, by strapping you around our second child at only 6 months of age, she indicated that you would be with us for life.  However, we’ve decided to go in another direction. Continue reading

B(e) Positive

Ever since I was a little girl, I was just a naturally glass-half-full kinda person.  Even the blood coursing through my veins is like a genetically programmed motto:  “B Positive!”  I’m not sure why.  Maybe it’s the way I was raised.  It might be because I learned about Jesus when I was very little and just always trusted that verse that says If He is for me, who can be against me?  Whatever the reason, being a naturally positive person has been a blessing in my life.  I certainly know my share of glass-half-empty people.  Inside or outside of Jesus relationships, there are just those people who see the glass as half-empty, smudged, out of style, etc.

Whichever you are today, you can switch to my blood type (figuratively speaking) by simply choosing to do so. Continue reading

Going in Circles….On Purpose

I think all of my posts thus far have contained one constant theme: a New Perspective. If you’re new to my blog, take a few minutes to scan through the archived posts and you’ll see the exact same theme a bunch of different ways 🙂 So perhaps I’ve led you to expect that once this lightbulb turns on and you are able to experience a different perspective all will be rosy.  Unfortunately, seeing with a new perspective is not like surgically replacing your eyes with new ones, it’s not even like wearing new glasses.  You don’t just acquire new perspective and the old is gone, never to return.  It is much more like any new (difficult) skill that must be practiced continually, using muscles in new and awkward ways.  It is the continuous “renewing of the mind” to which we are encouraged in Romans 12:2. Continue reading

Be Un-Special

This will be a really busy week for me.  Not stressful or hectic, but definitely busy.   As I reflect over all the things I’m currently doing, planning, preparing or arranging, it reminds me how Un-Special I’m being. And that makes me really happy!

Sometimes being a special needs mom can become more than just a hat that I wear, but a label that is branded on my heart.  In the past, that label has caused me to feel like an alien walking on a planet of unfamiliar creatures.  Because my situation is unique, and one that most other people around me can’t even imagine, I am prone to believe I am completely unlike anyone else.  That can be dangerous. Continue reading

Santa Claus FOREVER!

It’s the most wonderful time of the year! I had decided not to post at all after Thanksgiving. To just let my thoughts and notes marinate for a while, and get back to the blog in 2015. But then Ben said something about it – like it was too long, or I should blog a holiday message – cant remember what exactly he said, but I think he was right…..
Because last week we saw SANTA CLAUS! And I wanted to point that out. I have a few special mommas who read my blog and their kids are a lot younger than my Nick, and the holidays may not feel so festive.  Perhaps they bring questions or uncertainties, health or emotional crises, party/travel/gift anxieties, or even uncomfortable interactions with well-intentioned family members. Continue reading

The Fortress Around my Heart

The most dangerous place I ever found myself, was inside the strong fortress that I had built.   Early on in my journey, I began fortifying my defenses, brick by brick. If I couldn’t feel anything, it couldn’t hurt me.  Of course I didn’t set out to build a fortress, I was just being practical and realistic (two of my “strengths” that often drive others crazy!)

I recently spoke with a mom who is right there, inside that fortress, and I peered over the walls and saw the tears that were perpetually right behind her eyes, and I suddenly remembered all those feelings myself – and wanted to make sure I sound a loud alarm to you all: Tear down the wall! Continue reading

Welcome to my blog!

Welcome to Redefine Special. Whoever you are, and why ever you’re here, I’m glad that you found this spot.

I began writing years ago, sensing that it was important to chronicle my journey as the mom of a special needs child. That journaling, which began on a PC the size of an ATM machine, continued in spurts for many years.  Only recently did I take the giant leap of publishing my experiences, one small blog post at a time.

This blog is titled Redefine Special, because that is where my journey took me.  After the initial highs and lows (and more lows) of having a special child, a great hope, joy and peace eventually broke through.  It broke out over everything in my life. I truly had an awakening to what Special is.  It’s not a burden to bear, a hardship to contend with, or even something to just accept. The definition of special has been changed by our society and put in “air quotes”  – to be used as a euphemism for less than, undesirable, or outcast.  My journey brought me  back to the original, true definition of the word: extraordinary and particularly valued.

I am writing each post for that one other special mom out there, who thinks she just has to accept her struggle in life, and deal with it.  No sister!  Follow along with me and you will see, you are so exceptionally gifted in this life.  YOU, too, are special!

If you’re not that mom should you read on? Well, apparently YES! The most unexpected part of sharing my story has been the people who are affected by it.  Men, women, moms, dads, college kids.  People from every walk of life have taken a moment to tell me they are so touched, changed, or challenged by the posts.  Because it is a true story of God’s mercy and grace, it is an encouragement to all.

Browse through my posts, which are listed in the left-hand column, or on the home page, just scroll down below this post to see my most recent posts.  If you are impacted or challenged by any of them, please leave a comment! You can read the background story of my son’s diagnosis on the page called “Why I’m writing this blog.”  I would definitely suggest going back in time to my first few posts if you’re looking to find your own redefinition of something (start at the bottom of my list of posts).

I’m not Normal (thank God!)

This morning I poured my coffee and sat down to check emails and the first thing I saw in my inbox was a message with the subject line: “Who do You Say You Are?”  It was ironic because I had just come up with today’s blog title in the middle of the night and I’m sure this isn’t the answer they were looking for! But that’s ok, because today I’m talking about NOT being normal, NOT fitting in, and why that is GOOD. Continue reading

Special is Special

My heart aches for others to know that special is special, in it’s most pure and true form.

Special is SpecialOne result of my journey has been a redefinition of the word Special. It reminds me of a passage from Paul’s Letter to Titus, which says that to the pure, all things are pure.  The word Special, in the most pure form, means something extraordinary and to be highly valued.  The rest of the verse says “…but to those who are defiled and unbelieving, nothing is pure.  Both their mind and conscience are defiled.”  I can admit that the meaning of special had been tainted in my own mind.  Since I was young I knew that special, as referring to individuals who were different, really meant “less than”.  Not something highly valued nor extraordinary, but something oddball and abnormal.  My own thoughts had been defiled and were working against me to shut out the truth of God and replace it with the perspective of society.  I was unbelieving and therefore my mind and conscience were unavailable to received truth and purity.  I realize now that Nicolas is  special. Very special.  He is a unique, extraordinary gift. Continue reading

This is Awkward

This week we need to confront something that might be uncomfortable.  If you know me, you know I’m a “people pleaser” and that confrontation is the thing I avoid at all costs! So although there’s a part of me that wants to skip this post, here we go. There is a fundamental truth we need to face in order to fully surrender and use God’s perspective completely.  I have heard a lot of people, including many well-intentioned Christians, proclaim the opposite of this truth.  I am going to show you what I believe is the Biblical, scriptural truth about a very sensitive, misunderstood subject, which is this:  God doesn’t cause suffering.  He does not inflict illness, loss, or tragedy on people today.  It is important for you to know in your heart of hearts that God doesn’t kill children, put cancer in bodies, cause airplanes to crash, or any of the other things we may have heard attributed to Him.  I have heard people say “God needed another angel in heaven so he took your baby” or any number of variations on that theme.  That simply doesn’t agree with anything I find in the New Testament – the Jesus-redeemeed part – of the Bible.  It may appease the  grief-stricken mind at first, but I imagine it can easily become a seed of disdain and anger  that will fester and grow towards a God who would act so cruelly. Continue reading

Letting Change Take Over

Best Friends

Best Friends

It is amazing how laying down your own perspective of things opens up a whole new world that you didn’t know you were missing.  When I finally stopped hyper-focusing on my immediate problem, I was able to see so much more.  Romans 8:8 took on new meaning for me: “And we know that in all things God works for the good of those who love Him, who have been called according to His purpose.” I finally saw what it was really saying.  Not, “God will make everything good/ok/all better” but “God works everything out for my good.” So then, in everything, God is bettering me and bettering my situation. That is a huge paradigm shift. He is making me better, making my family better, my marriage better, my friends, community, etc. Not necessarily by answering every prayer or fixing every problem I face. That verse says that within the problems, I am being bettered. Continue reading

Change Your Mind

I began my “special” journey really mad at God.  Subsequently I stumbled upon the concept the God’s perspective was wholly different from human perspective.  The concept that what I see isn’t at all what God sees.  He is all-knowing of past, present and future while I am befuddle in all three of those.  Learning and understanding a concept, however, is not the same as putting it into practice.  That’s what I mean by surrender – actually letting that concept guide my thoughts and actions requires a challenge to every natural instinct I have.   Continue reading

Perspective is everything

Nicolas enjoying some sand

Nicolas enjoying some sand

Soon after receiving a devastating prognosis for my baby, I was introduced to a concept that eventually changed everything – my whole life, not just the specific circumstance I was facing with my son.  I ran across this concept in a much bigger story than mine, in the book of Exodus.

This story begins in Exodus 3 where we find Moses walking through the desert. Here’s my super-condensed recap of what preceded this walk in the desert. He has run away from the luxurious life he had known since childhood.  As an infant he was marked to be killed but then miraculously spared by a princess and raised as royalty.  Then, as an adult he is pulled emotionally back to his roots, perceiving for the first time the cruelty being imposed upon his people and he chooses to flee to the desert. There, I would imagine, his plan is to live out the remainder of his life in anonymity and tranquility.  So while contentedly walking his sheep through the afternoon sun, he sees in the distance a burning bush.  As he walks toward the bush to get a closer look, God’s voice audibly calls him by name “Moses!” and when Moses replies “Here am I” the voice says:

“Do not come any closer. Take off your sandals, for the place where you are standing is holy ground.”  Exodus 3:5 Continue reading

REDEFINE SPECIAL: not your typical mommy blog

Every mom has unique challenges. I’m convinced each of us finds ourselves completely alone at times, in situations unlike those faced by any other. As an infant my firstborn  sometimes spontaneously projectile-vomited all his milk after nursing. Then, when that same boy was 5 he broke his arm and we didn’t believe him  – after three days of crying, the ER docs showed us how awfully neglectful we had been.  From ages 5 through 13 he fainted at the sight of blood, a lot.  I recall lots of challenges here and there, peppered in with the joy and exhaustion of raising a typical, yet unique little boy.  As he grew, time flew by.  He seemed to go through constant metamorphosis – looking back now it seems like one day he was sitting, the next day standing, and a few days later walking.  His first day of kindergarten is fresh in my mind, even though he is now in high school. Milestones rushed along in flurries –  a whirlwind of growth, change and progress.  Overall an average story for my exceptional young man.

But there are other mommy stories – and I have one of those too.  There’s not much “typical” to comment on, or compare notes about, and not one instance of developmental milestones just breezing by, unaided and unnoticed.  These special stories, I believe, are among the most precious gifts from a loving God.  These are the experiences that can be so life-changing and overwhelming, so as to reveal a light and truth previously unfathomed.  It is for the purpose of pulling back this curtain that I write this blog.  So that perhaps one other mom can find the same truth – “having the eyes of her understanding enlightened so that she can know what is the Hope of [her] calling” (Ephesians 1:18) My prayer is that you will be able to see that “special” is really special. That challenged and flawed can simultaneously be perfect and blessed.

This writing is the result of my own change of view.  When my baby was diagnosed with a genetic disorder, I found myself in a situation I could not understand.  I was unable to discover any legitimate answer to the question “why?” and was left in a lonely confusion.  Gently I was nudged by the outside world and my intrinsic sense of duty towards “acceptance”.  While attempting to acclimate myself to resignation, I came upon a story in the Bible wherein God’s perspective is unlike anything  a human can reason or understand.  I was confronted with the proposal of viewing my situation not by what I could see, or rationalize, but through the filter of an all-knowing, all-giving, God whose plan and purpose were always for good.  This radically different thought process of abandoning my own perception and using God’s eyes, completely changed my life and my hope for the future.  I have come to know that “acceptance” is actually a far cry from “embracing” and “enjoying”, and that is where I want to be and stay.

 The change of perspective didn’t occur overnight, nor by happenstance.  The purpose of this blog is to share the various lessons I have learned along the way, the truths that have enabled and encouraged me to continuously renew my mind and maintain the new vision.  Taking this journey together we will unearth the promises of hope and peace, and a place far beyond simple “acceptance”.   Because Special truly is Special.

Please consider joining me  by Liking my Facebook Page, or following my blog on WordPress, as I continue to share reminders of God’s promises, and examples of how to apply them to your life.  Just today I found this quote in a book I’m reading called “Four Cups” by Chris Hodges:

“Don’t settle for less than God’s best for you.  Don’t stifle that voice in your heart that tells you there has to be more. Don’t stay on the treadmill of conformity, trudging along to someone else’s idea of who you should be.”

Let’s encourage and challenge each other to never settle!