Special Momma, the Choice Is Yours

About seventeen and a half years ago, we were handed a Medical Report by a well-meaning geneticist. The photocopied pages outlined all of the possible (terrible) characteristics/symptoms/complications that would accompany our baby’s new diagnosis of a rare genetic disorder.  He was just an infant, yet the report predicted a tragic future.

Our choice that day, and every day since, was:  upon  which report would we base our lives.  We could treat this infant as if he were a disabled person, who would be defined by the limits and difficulties described in the reports.  Or, we could believe the report of the Lord.  My Bible reports in Psalms 127 that children are an inheritance of the Lord.  Psalms 139 says that our Heavenly Father 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. (This post was recently revised, on my 49th!)  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?

H”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 (it’s not a thing)

Two years ago 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

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

Foreword: When I first started blogging I was a frequent contributor to a site called TheMighty.com.

They would send out a monthly request for stories, with specific topics or assignments.  One of the first posts I wrote for them was in response to their request for Marriage and Special Needs. The reason I’m giving you this foreword is because this post was written for a secular website. You’ll notice the absence of my usual scripture references. However, it is most definitely a biblically based testimony of God’s goodness and the benefits associated with following His principles. Please let this encourage you in your marriage today.

Being married or staying married or leaving marriage are all very personal and sometimes painful topics for anyone — and more so for special needs families. I’ve seen statistics that go up to 80 percent for the special needs parent divorce rate. I’ve met gorgeous moms whose husbands walked out of the labor and delivery room and never came back. I’ve seen marriage after marriage disintegrated by the overwhelming challenge of having a special needs child. When I survey the landscape, marriage and special needs kids seem to be like oil and water.

I often wish I could shout from the rooftops that special needs parenting can bring you closer together rather than drive you apart! My special needs son has often been the glue that has held my marriage together. I believe that having a child with special needs can be the bond that holds you and your spouse tighter and closer, when all else in life falls apart.

I’m not saying my marriage has been perfect. Honestly, it’s been on the brink of disaster as much or more than any marriage that has endured for 26 years. And I am not even saying that the added stress of having a special needs son didn’t add fuel to those disaster moments. However, I am saying that in those moments, there was one specific incentive to just hold on for one more day, and that was our special needs son, Nicolas.

We’ve been special needs parents for almost 20 years and I believe that our joint love for our son now binds us to each other in a way that is stronger than any force that could come between us. When my husband and I cannot see eye to eye on anything, we have a common thread that only we two share. There is one thing, one undeniable experience that no one else in the world can or will ever understand: being Nick’s parents. Over the years, even when we disagreed on how to parent Nick, the shared journey continued to push us further down our unique path. He is our marriage “secret ingredient.”

Here’s my advice: You can choose, each day, to be on the same team or not. There is enough coming at you — plenty of opposition — and you don’t need more inside your own home. You have only one other person with whom you can choose to side, huddle and share those thoughts and fears that no one else will ever comprehend. The sooner you get the “same team” mentality going, the sooner you’re on your way to overcoming any obstacle.

Let’s face it, our perspective on life is unique. We know that the little stuff is basically anything else that isn’t related to our child. So the toilet seat position, the dirty laundry on the floor, the working late or financial struggles that might cause others to lose focus, should seem (because they are) so miniscule to us, that they don’t even affect us. We might disagree on everything, but we must agree on one thing: wanting the best for our child. Does this apply to every parent? Well, I would say yes — we have a typical son as well, and we both want the best for him. He, too, is on a unique journey, but it is one that he does and will take on his own. He’s been an independent, smart, fully functioning guy for a while now. We “contribute” to his success, which is different from our special son, where we very literally “determine” his success, now and in the future.

We long ago put aside the “me vs. you” and picked up the “us vs. the world” mentality. Not only has it served our marriage well, but it has also been true as we journey through special needs parenting together.

Parenting a special needs child together with your spouse can become the most wonderful experience the two of you will ever share. It can create an indestructible bond that will hold you together in the face of every adversity. Together you will face mountains and climb them together, helping each other along the way, so that when you reach the top, you have a friend by your side to admire the view.

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