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

#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

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

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

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

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

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

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

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!