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).

It’s All About ME

Anybody else have one of those friends who, no matter what you start the conversation with, whether a problem, or good news, or a current event  –  it always ends up being about her?  You could call and say “my grandma just died” and within 4 minutes you’d be hearing a story about how hard it was for her when her grandma died.   You run into her at church and when you mention that you want her to come see your new car, she ends up boring you with stories of her own car search.  She can neither celebrate or comfort you, because it’s all about her!  Not much of a friend at all, so I am wary to say to you today: My blog is all about ME!

There is currently a huge backlash in the blogging/social media world against moms who post about their children with special needs. Really mean accusations are flying at moms who chronicle their child’s struggles, or disclose challenges their child faces.  The accusers point out that revealing private information about one’s child, without the child’s explicit permission, is abusive and simply for the purpose of the parent’s own self-promotion.  So again I point out: this post, my blog, all my writing and public speaking are about ME!

Why? Why would I dare be the girl who wants to talk about me? Why would I make myself the center of my discourse? The answer is found in the book of Revelation:

And they overcame and conquered (the one who accuses them) because of the blood of the Lamb and because of the word of their testimony. – Revelation 12:11

the Bible tells us that the sacrifice Jesus made for us, combined with the word of our testimony, is the key to overcoming.  Therefore, I must write about my journey.  I must speak to others about the challenges I face and how the Lord has rescued me from them.  How His grace has supplied all my needs, and calmed all my fears.  I’m not writing for pity, for excuses, or even to entertain.  I want you to know that I put words to paper (well, to screen) so that one other mom might know that there is hope, peace, joy and salvation.

For this reason, you will soon see promotions for my upcoming book! Yep! Congratulations, you’re the first to know.  The book is already through the final stages of editing and shortly will be published and available for purchase or download.  Will you read some details about my son’s diagnosis and struggles? Yes you will.  But be certain the book is not about him.  Being a special needs mom, you see, is not about the special needs child.  It may feel like it, or look like it, but it isn’t.  It is about the mom.  She is the special one I am targeting.  She is the one with whom I desire to share the “word of my testimony” and whose own testimony will, one day, touch others.  So please stay tuned, make sure you “like” my Facebook page, and most of all, be encouraged by my testimony to know that you can overcome.

My impression of a bathroom “selfie” LOL

 

In the Waiting

“Take courage my heart
Stay steadfast my soul
He’s in the waiting

Hold onto your hope
As your triumph unfolds
He’s never failing”

– Bethel Music, “Take Courage”

 

Oh! The waiting! It is the 100% commonality of all the special needs moms.  Because a diagnosis has a prognosis, and a prognosis looms with things to wait for, or dread, or expect, or fear.  Nicolas is 16 and we are still waiting for things. Wondering if they will or will not happen.  Being part of a parents group for his particular rare genetic disorder is often comforting, sometimes reminiscent, and occasionally difficult – because it always reminds me of something we’ve waited for.

I all but forgot about waiting for him to be toilet trained, until recently there was a discussion among dozens of parents of younger ones about it, then I remembered how I waited through ages 5, 6, and 7 before he accomplished that milestone.  I definitely remember waiting for him to speak.  His prognosis was of “absent speech” and his first word at age 4 still brings a tear to my eye. Continue reading

5 Tips for running the Special Needs “Marathon”

“…And let us run with perseverance the race marked out for us, fixing our eyes on Jesus…” Hebrew 12:1b-2a

 

I recently became a runner.  At age 48 I decided, having never run farther than about a half-block, to sign up for a marathon.   It started with an 8-week pre-training training, followed by actual marathon training.  Coincidentally, we celebrated the 16th birthday of my son, who has  a rare genetic disorder, on my first day of “real” training.  I have learned so much about myself, both physically and mentally, through this training process. As I gradaute to longer run I realize that parenting a child with special needs is just like a marathon.  More importantly, I now understand that just as I train  and prepare to run, us special needs parents need to prepare for our marathon.

Here, my top 5 tips for success in the special-mom-marathon:

Get a group. I just happened signed up for the Marathon with a team. Team World Vision sent me the training schedule, added me to several Facebook Groups, organized weekly group runs, and supported me every step of the way.  I made lots of new friends who were in the training with me, and also some new friends who would be running their 7th or 8th Marathon.  I can truthfully say that without that high level of support and accountability there is no way I would have stuck through the bad days.  An epidemic in the special needs parenting community is isolation.  You can survive like that for a little while, but if you’re marathon-ing this thing, you just won’t make it without a solid support group.  Groups encourage each other, offer assistance and support.  A group can be two people, or twenty or two hundred.  You need a group.

Fuel. Did you know that marathon runners carry fuel (food) with them on the race course?  They acknowledge that their body is going to use all of it’s resources along the run and will need to re-fuel before they finish. They also have extremely specific meals they eat or avoid the night prior to a long run.  Nutrition is probably the most underestimated key to marathon parenting.  When typical kids are in that stage where mom has to chauffer them everywhere and keep a close eye, momma can to survive on fast-food drive thru and candy bars at the check-out line. That’s ok, eventually momma will get back to the gym and grilled chicken as her kids become self-sufficient. Marathoners need to be running strong after mile 20. My special guy is 16, and I still have days where drive-thru or NO food seem to be my only options. But I need my heart, lungs, muscles and bones to last alot longer than most and that means I have to be much more careful of how I fuel.  Nutrition for you is as important as it is for your child.  Physical and mental health must be well-fueled.  

Rest. Marathon runners know that sleep is the key to their body’s performance the next day.  They listen to their body, so the night before and after a 18 mile run you will most likely find them in bed at 9pm.  Parents of newborns can make it through those weeks and months of no sleep because eventually their baby IS going to make it through the night.  I know special needs parents who haven’t slept through the night in 12 years.  Get some sleep.  You must allow your body and mind to rest, in order to perform at the level your child needs.  Do whatever it takes to get some sleep every so often.

 

It’s all in your mind.  I think the one thing about running longer distances that took me by surprise was how mentally challenging it was.  I assumed that the struggle would be physical.  My legs get too sore to move, so I stop running before I cross the finish line.  That never happened.  What happens frequently on longer runs is that my mind says: “this is too far/hot/long/awful, let’s stop running now”.  My legs can keep going, my heart and lungs are still pumping, but my mind is trying to shut it down.  Without minimizing the severity of your situation, can I suggest to you that perhaps your biggest struggle is in your mind?  Training my mind to not throw pity parties or be angry about my son’s condition took a while.  But eventually I succeeded in shifting my perspective and realized (as sadly cliche as this is about to sound) “it could be so much worse”.  If I shut down negative thoughts and welcome a new grace every morning to get through that day, I’ll make it.  Don’t let your mind be your enemy.

Embrace the marathon.  For the first few weeks of marathon training I woke up every Saturday morning thinking  “oh my gosh I can’t possibly do X miles today”.  And then every Saturday when the long run was complete and I was still alive, I felt the most overwhelming sensation of joy.  Maybe a runner’s high? I just know that eventually my Saturday morning mentality shifted so that I woke up anticipating that joy at the end of the day’s big run.  I began to embrace the fact that I was going to eventually get to 26 miles, rather than fear it.  My first years as a special parents were no different.  I woke up worried each morning, and approached each milestone missed, or specialist update with trepidation.  But eventually I began to recognize the profound joy within the journey.  I was able to see that I experienced depths of emotion, faith and love that most typical parents won’t ever know. I now embrace this role and cherish this special blessing that I’ve been gifted.  I look forward to every step of the way as a new treasure that will surely unfold before me as I embrace this marathon.  

running-shoe-photo

Special Momma, the Choice Is Yours

When you receive a diagnosis for your child it is usually in the form of medical reports.  The full Doctor’s report gets sent home with you, along with plenty of supporting documentation.  In our case, the geneticist sent us home with medical journal reports that outlined all of the possible (terrible) characteristics or symptoms that would accompany our son’s genetic anomaly.  He was just an infant, but the reports painted a bleak outlook for his future.

Our choice that day, and every day since for the past sixteen years, was:  upon  which report would we base our lives.  We could treat this infant as if he were already a disabled person, who would be defined by the limits and difficulties described in the reports.  Or, we could believe the report in Psalms 127 that says children are an inheritance of the Lord.  And the report in Psalms 139 that says that He has knit us together in our mother’s womb and we are fearfully and wonderfully made – all of us.

I’m not talking about being delusional, or living in a state of denial.  We are aware of the challenges that our little guy faced, and still faces.  But we have taken our example from the book of Numbers, when Moses sent out twelve spies to report on the land the God had promised them. Ten of them came back with a really negative report about the challenges to be faced.  But two of the spies saw beyond challenges.  All twelve agreed it was a land better than any they had seen before with wonderful fruit.  But only two spies understood that all the blessings and treasures were completely worth the price of a few obstacles.  Further, they insisted, the Lord would surely help them overcome.  Unfortunately the masses went with the ten spies, fearing the battle that would be required for such a wonderful prize.

So we base our lives on God’s promises – His report.  Just as in the example of the Israelite spies, the prize has certainly been worth the battles.  Yes, battles there have been aplenty.  But the reward, the treasure, and the promised land are exactly as reported!  Our son may have similarities to the original medical reports, but if I’m being honest he is much more accurately described by those Psalms.   It’s a choice we make every day, and in the face of every set back and situation.  You are just one choice away from a really good report! Won’t that be nice for a change?

melaniegomez3

#sorrynotsorry

And He said to them, “Come aside by yourselves to a deserted place and rest a while” Mark 6:31

This is one of those things that could get me kicked-out of the Special Needs Mom Club.  Could garner some frowns, and some quiet “smh’s”.  But I’m admitting it anyways, because you need to do it too.  I recently left my special guy.  For six days. And went to Paris! (cue gasp)

We special mommas are constantly urged to take care of ourselves.  Take some time, do something for “you”. But we don’t.  We can’t.  Sounds good on paper, but it actually doesn’t work.  Well, dear friend, you MUST.  And here’s the part you don’t realize, it’s for the benefit of your child.  No, not because he’ll have a happier or well-rested momma (of course, that’s a bonus). But because – and I know this is going to be uncomfortable – he NEEDS to experience life without you. Continue reading

To: YOU

A special needs mom’s Christmas wish list is far from typical.  And it mostly contains items Santa can’t manufacture at the North Pole nor fit under a tree.  But I was reminded this past Sunday at church that my wish list has nevertheless been fulfilled.

What’s on your list, momma? Do you need a peaceful night of rest? The answer to an impossible situation? Strength to move a mountain or stand in a storm? A warm, loving, non-judgmental hug? Well, here it is, just for you, and it came on Christmas morning:

For to us a child is born,
    to us a son is given,
    and the government will be on his shoulders.
And he will be called
    Wonderful Counselor, Mighty God,
    Everlasting Father, Prince of Peace.

He is all you need.  Sounds simple, almost silly, but I promise it is true.  Let HIM be your counselor this year, lean on HIS might, know HIS fatherly adoration of you and your child, and rest in HIS peace that passes all understanding.

If I could reach out to every special mom I know, or who reads this blog, this is the gift I would want you to have.  Merry Christmas dear friend!

Nick and his school friend Shankar, celebrating Christmas with LOTS of Joy!!

 

Special Priviledge

I would like to confess to you a recent realization: I am the product of Special Needs Privilege.  You’ve heard all kinds of privileges being thrown around as accusations lately, but this one is probably not at the top of the list.  However, I’m now fully aware that such a thing exists, and I’m one of its victims.   Continue reading

Just Keep Swimming

You know that scene in Finding Nemo where Dory and Marlin are swimming  deep into a bottomless, dark cavern?  Marlin, Nemo’s Dad,  has no idea where they’re going or what will happen next, yet his friend Dory is happily singing “Just Keep Swimming!”  The two of them together sum up my special mom split-personality perfectly.  Some days I am overwhelmed by changes, unsure of where I’m going and what will happen next.  But other days, when I’m at my best, I can happily sing to myself, “just keep swimming!”

This past month has been chock full of changes: Continue reading

when i’m 50….

I’m thinking about my age, as you can see from today’s title.   Since it’s my birthday, my actual, chronological age cannot be avoided or denied.  I’m 48.  But I must admit that most of the time I live my life feeling like I’m somewhere in my late 30’s (anyone else?)  I honestly forget that I’m “pushing” the big Five-Oh! Over the past few months, however, the impending half-century mark has been on my mind. A lot. Continue reading

The (awkward) Mother’s Day Spotlight

“For you created my inmost being; you knit me together in my mother’s womb.” Psalm 139:13

Mother’s Day is upon us!!!  As a mom, it’s MY holiday.  “Mom” is probably the deepest, most powerful identity that you could find buried inside of me.  Giving birth to my children changed me in powerful, miraculous ways and that label is branded on my heart forever: “mom.” Continue reading

Special Needs Mom Life: Refreshing Waterfalls or Devastating Flood?

Psalms 42:7 Deep calls unto deep at the noise of Your waterfalls; All Your waves and billows have gone over me.

I’m a little old school, so I’ve been hesitant to go all-in with Facebook and other social media “relationships”.  I define friends as people who I’ve met in person, and over time developed lots in common with via shared experiences. But it’s 2016. I am currently collaborating on a book with a woman I’ve never met! It’s a new and curious experience to encounter people online whose passions, experiences and mission align so strongly with my own.  I’m not sure of where she lives, no clue of her favorite food or TV show.  But nonetheless, I now count her, and several other FB strangers, among my friends.  

I recently submitted our diagnosis story for the new book she is writing, and she edited the heck out of it – LOL! Truly she’s a fantastic editor, I’d love to send her everything I write, but I feel that would wear the friendship thin pretty quickly.  Within her editing, however, she highlighted one sentence and commented: “I absolutely love this sentence!!!! Wow. Such a powerful thought, and worthy of a blog post all on its own.” Continue reading

Running or Just Running Around?

“I run in the path of your commands, for you have broadened my understanding” Psalm 119:32 NIV

if there’s a one word description of my daily/weekly life, it’s running. Now before you get the wrong impression, let me make clear I am NOT a “runner”. I don’t lace up running shoes and head out with my headphones and bouncy ponytail – I see those women all over town and admire/envy them – they’re adorable. I’m talking about running around. Racing from one thought to the next, multi -tasking at light speed between multiple coinciding responsibilities, and our car keeping these winter roads hot between therapy appointments, story time, group activities, meetings, etc.  Most moms I know are this kind of runner. Special needs moms just replace the usual running to soccer practice or ballet with doctors, therapies, medications, behavior crisis, etc. Continue reading

It’s Time to get over your Perfectionism

“Martha, Martha,” the Lord answered, “You are worried and upset about many things, but few things are needed – or indeed only one.  Mary has chosen what is better, and it will not be taken away from her.”Luke 10:41-42

pickle jar

 

The jar of pickles in this picture reminded me of the most important lesson that this perfectionist-natured person has ever learned.  Perfect is over-rated.  Not only is perfect over-rated, but I’ve truly learned that when life is perfect, you miss out on all the best stuff. Continue reading

Santa Claus Forever! (revised re-post)

It’s the most wonderful time of the year! Hear me out.  I know that the holidays seem loaded with landmines for special kids.  They bring questions, uncertainties, health or emotional crises, party/travel/gift anxieties, or even uncomfortable interactions with well-intentioned family members. I’ve been there, friend, my special guy is about to experience all the highs and lows of his sixteenth Christmas.   Continue reading

Here’s Not Here

If I admit something to you that you may find shocking, or at least slightly inappropriate, do you promise to still be my friend? Here it is: I love “The Walking Dead” tv show! My guys got me into it during the first season and I’m hooked.  OK, you promised, so now you have to keep reading.  This blog isn’t about zombies or guilty pleasures. But the title, “Here’s Not Here” is a quote by one of the main characters this season.  It’s how he deals with the reality around him of a post-apocalyptic world.

My latest revelation in the special mom journey, is realizing that – for all those early years, the struggle-to-comprehend years, the more-questions-than-answers years – Here’s not Here.  Let me explain, with the help of my (least) favorite prophet, Jeremiah. Continue reading

When being a joyful mom doesn’t make sense

Here I sit, in the Easter Seals lobby.  Extra large Miami Dolphins coffee mug in hand, laptop in front of me, headphones on with Israel & Newbreed’s latest song “My Strength” blasting in my head phones.

“You’re the joy no one can take away, You’re the peace inside I can’t explain! You’re the strength I need, you will always be my strength!”

I will admit to you that I am openly dancing in my seat!  Honestly, these people are lucky I have enough self-control to not be clapping or, worse, singing along. So much joy right now.

I am not in a party environment. The joy level here is zero.  The parent/guardian/caregiver faces are not celebratory.  The whispered conversations seem foreboding.  I wonder if the passer-bys think maybe my coffee mug has a little whiskey in it for good measure. Continue reading

The Striking Similarity between Special Needs moms and a Queen

Life as a special needs mom is about as far away from Royalty as you can get! Remarkably, however, I have found great wisdom within Esther’s pages.  How on earth could I identify with a queen?  Well, first of all, Esther wasn’t born a queen.  She started out as a regular girl with a less than glamorous, even less than average, life.  Then, she kept running into extremely unlikely circumstances.  Every step of her journey was completely atypical for someone like her.  (sounds more familiar now, right?) Yet God designed each of those steps specifically for a great purpose she could have never fathomed. Continue reading

5 Things Pre-Natal Testing Wont Tell You 

Not for the first time, I find myself comforting a pregnant momma whose doctors have diagnosed a problem with her unborn child. Prenatal tests and needles have determined her child to be imperfect – medical opinion agrees that termination would be in the family’s best interest. I’ve experienced these conversations before: the doctor provides all of the medical and cognitive complications that very likely will be present at birth. The uphill battle that will ensue for the child to survive, and the imperfections that will remain. I have no issue with doctors presenting the facts for parents to make an informed decision. Families make these impossible decisions every day. My only issue is that doctors cannot inform any parent completely. Their prognosis has no way to include extremely important facts that parents should know. Continue reading

Perfect Timing (one-year anniversary post!)

One year ago today I hit “publish” on my first blog post.  As soon as I did, something occurred which could never be un-done.  I stepped into a new landscape which I had contemplated for several years.  I had delayed that moment for so long, because I had not found the perfect timing for it….and I still haven’t.

In honor of the anniversary of making that giant leap, today’s post is about one of the great myths of our generation: Perfect Timing.  So many of my friends are currently struggling with the pull or desire to do something or change something, but the perfect timing just won’t present itself.  Anyone, in any season of life, can succumb to this vicious cycle, but the special needs mom is perhaps most prone to be defeated by the “I wish I could, but I can’t right now” thought process. Continue reading

Courage to Keep Up the Daily Grind

Each and every post I write has the same foundation: Redefining the word Special.  Seeing that “Special” really is special has changed my life, and has helped me see many other things with a completely new perspective as well.  Today I’m talking about redefining, or at least expanding our definition of  COURAGE.

“Be strong and courageous” – How many times have I heard sermons or teachings on these four words from the Bible?  We recently spent an entire month teaching this theme to our Elementary kids sunday school class.  This is one of the overarching messages in the Old Testament for the people of God.  Joshua received this emphatic commission before embarking on his epic adventures.  King Hezekiah used it in his speech delivered to the people of Jerusalem on the eve of invasion by the Assyrians. But only recently did I discover this instance:

“Then David continued, “Be strong and courageous, and do the work. Dont be afraid or discouraged, for the Lord God, my God is with you.  He will not fail you or forsake you. He will see to it that all the work related to the Temple of the Lord is finished correctly.” 1 Chronicles 28:20

Continue reading