Get yourself some “but” 

But we have this hope as an anchor for the soul, firm and secure. It enters the inner sanctuary behind the curtain, where our forerunner, Jesus, has entered on our behalf. He has become a high priest forever…. Hebrews 6:19-20a

The most comforting thought I can conjure, is that God’s plan for my life is to give me hope and a future. Lots of people quote Jeremiah 29:11 because of it’s promise of prosperity or protection. I must say that as a mom whose baby’s future is so uncertain, hope is that one thing I can’t do without. there are days of setbacks and challenges when I can’t imagine one good reason to get out of bed! Hebrew 6:19-20 says “But We have this hope as an anchor for the soul, firm and secure. It enters the inner sanctuary behind the curtain, where our forerunner, Jesus, has entered on our behalf.” I emphasize the word “but” there because it is actually one of my favorite words in the Bible. (super weird, let me explain)
I love how the authors of the Bible used that little conjunction over and over again: they spell out a dire situation, a negative prognosis, a disaster waiting to happen, and then they write my favorite three letters “but”. Everyone from David, to Queen Esther, to the new testament apostles had their “but” moments. I like to think of having Hope as always having a “but”! Praise the Lord, I can recite for you endless stories of how things looked bad, but God. Let me make clear that this applies to every area of our life. Having a special baby impacts everything. The ripple effect of a diagnosis rocks it all. Some of my “buts” include: 

  • My marriage was almost over, but God redeemed it. 
  • Our financial crisis was about to drown us, but God made a way for us to overcome. 
  • My child was given a life sentence of despair, but God substituted it for a life filled with joy.

Because all things work together for the good of those who love God, our marriage crisis actually made us so much stronger. The financial crisis pushed us to Biblical financial wisdom that changed our future. The genetic disorder that should have stolen my child actually gave me one that was more than wonderful. 
There is always hope in Jesus, because we are guaranteed that every situation has a “but”! There is an anchor for my soul, which makes it firm and secure. Jesus is my high priest forever, which means He is my perpetual “way where there is no way”, He is always the answer to every unknown. He covers me, provides for me, intercedes for me in advance, before I am ever even aware of a need. 

For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11

Lean In: Whatever you are facing today, try writing it down or saying it outloud not with a period at the end of the sentence, rather conclude with these three letters and a few leading, promising, hopeful dots: but…..

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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

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?

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

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

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

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

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!