Tag Archives: community

What does ‘special needs’ look like?

Take it from me, a scar does not form on the dying. A scar means, I survived.

Little Bee, by Chris Cleave

Perhaps you saw this article whip through your facebook feed this week? Emily Colson took her son to a movie, and her son panicked, and the crowd applauded as they left. The comments are full of heartache and pragmatism, sorrow  and shoulder shrugs. 

It’s a difficult story for many reasons. Maybe because I expect better of grown ups. Maybe because I fear the same happening to me. Maybe because I have been every character.

I have been the jeering crowd and I have been the obviously wounded. I have been the parent in agony and I have been the silent condemner. I have been them all except the One who sees perfection before performance and beauty from ashes.

The reality is, we all walk with scars.


Ry’s special needs are diagnosed but invisible. She has no syndrome that explains itself silently to questioning eyes during episodes. Lord knows, literally, that some things would be easier if it were more obvious. On good days, we are a beautiful family. On normal days, we are a beautiful family with a child who struggles to keep it together. On any day, “that child” could be any one of my three children- or all of them.

Do we need a label to warrant grace? To deserve kindness? To receive love?

I am weary of the line in the sand reading “special needs.”

If we sit in a movie theater, chances are we sit near a veteran who is trembling from the larger than life gun blasts exploding in the previews. But it’s dark and we can’t see him taking deep breaths.

If we sit in a movie theater, chances are Ry sits near a veteran who’s sitting near a single mom. She will spend the hours in the dark with tears streaming down her face when the on-screen love leaves because she, herself, walked away years ago but the hurt is still raw. It’s dark in there… and we can’t see her.

Near them, a man with a cane who needs extra time to sit down. Next to him, a child incapable of being an adult. And next to that child, an adult who has forgotten what it’s like to be a child. We observers see nothing until the cup overflows.

Tread lightly.

My special needs are invisible. So are yours. And, so are the person’s next to you.

Should you find yourself taking shelter in a crowd throwing stones, I beg you to still your hands. Bite your tongue. Close your eyes. Tomorrow, it will be you on display in an awkward moment and there may be no one to explain or willing to understand.

I am desperate to teach my children that there is not one person walking this earth without a hole in their heart. Every single one of us is aching to simply be loved. Some days, it’s glorious and full of sunshine and easy. Other days, it’s a battle to walk straight with the invisible weight of the world on your shoulders. But most days… MOST DAYS… you are basically fine.

Someone around you, near you, next to you… some one obviously or secretly or on a thin line in between the two… someone is not basically fine.

Do you see the signs? Invisible signs all around you read, identify, and explain:

My father left me.

I can’t do math.

I’m in a dangerous marriage.

My nerves are on fire.

My voice doesn’t work like yours.

I hate the way I look.

I’ve lost 4 children.

We can’t pay our bills.

Be you marked and obviously bruised or a quiet soldier, be kind. And if you cannot be of help, simply be quiet. And in that quiet, pray.

Pray to understand what it is to be loved by a crowd and then crucified by the same. Pray for healing of your own needs and to be a healer of others’. Pray for a raw heart and a gentle smile. Just pray.

Pray and be changed for the good.


You are welcome.

How to have a hayride:

You should definitely invite everyone you know. After 7 years, let the record show that whether you mail invitations, facebook invitations, evite invitations, or stand on a street corner with a banner, 50 people will show up on your doorstep at 6pm. Invite everyone.

You should have only one bathroom. That bathroom should both NOT LOCK and have 2 doors. One of those doors should be made of plywood that enters into the master bedroom. Keep it classy. Make your bed.

You should forget to put out drinks. Remember the hotdogs and the sandwiches and the salty chips with dip, but forget the drinks until halfway through.


You should host in a home with approximately 400 square feet of accessible inside space. Seven years has proven that the basement goes completely unused. Some people head straight to the bonfire out back and do not come back inside, using children to ferry drinks and food. Others claim the couch and still others the porches. It’s enough room. It is. It seems like it’s not, like it will never be enough, but people make themselves comfortable whether there is actual space or not.

You should build a massive hay fort with 5-foot bales and secret passageways that encourage children to stay outside and makes new friends/fake enemies. Put the fort within easy viewing from the front window so moms can monitor any injuries without having to be away from the chocolate pecan pie.

You should know that you’ll forget to eat. You know everyone who’s coming, so you’ll be hugging and laughing and smiling… and you’ll forget to eat. Plan ahead by making incredible friends who hide pies in your kitchen cupboards for you to find after everyone has left.


You should have glow sticks. It gets dark out in the country, even with a full moon… so have glow sticks and candy apples for children. This will endear you to them and trick them into being visible and perhaps 1% safer.

You should have a hay wagon that is excessively bumpy. The trail should have random tree branches to surprise people and very steep hills. People will think the tractor sounds “tough” and “vintage” and you will nod and say, “Yes. It’s fun, isn’t it?” all the while knowing it’s just in disrepair because you forgot to fix the muffler. Perspective, folks. Perspective.

But, and this is the most important thing,

You should.

You should do it. Welcome them in with spotted windows and dirty floors, questionable forecasts and stuffy noses. Turn on the porch light and light the fire for new friends and old friends and the possibility of fellowship. Your sink will be dirty and someone will fall off the trampoline and yet another will miss the hayride all together, but there will be news of new babies, stories about grammas and moose, and the ease of friends making friends with other friends.

All you have to do is hold open your door. Your cheap, non-locking, finger-printed door and say,

“You are welcome.

You are welcome here.”


You have good friends. Really good friends. And while this season of life does not allow for weekly dinners or sing-alongs anymore, studies have shown that people will come if you make them macaroni and cheese. They will. They will come even if it might be muddy, if the kids will go to bed late, if it’s 45 minutes out of their way, if it’s a full moon.

They will come and you will say, “You are welcome.”

But what you mean to say is,

“Thank you.”

until we meet again

To my friend who is hurting,

I love you.  

It is not enough today, I know. But, I love you.

There is a desperate angst after a miscarriage… or two or three. It hurts where you cannot reach, where you cannot see, where friends cannot go.

Losing a baby after already having a successful pregnancy carries a different weight on the heart, I think. You have lost not only the idea of a child… no. Now, you know what is gone. You lost a child, a sibling, an “I absolutely want to do this.” Your child. It is different and it is exponential.

So, grieve. Grieve as though your heart would break the sky in two and the deserts would overflow with water. Grieve for that moment, that chance, that maybe. Grieve. You give it its due. That child is blessed and whole and singing now, and we long to see it again.

Do not lose heart, Friend. Though outwardly you are wasting away, inwardly you are being renewed day by day. Your light and momentary troubles are achieving for you an eternal glory that far outweighs them all. So fix your eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal. (Paul to the Corinthian church, A.D. 57)

You are not lost.

Hope can find you. 

Dearest, would that I could heal you.

But hear me when I say you are not broken.

You are the very image of God, your Creator, weeping for His son.

You are Mary, unable to save her child.

You are Abraham, commanded to sacrifice.

You are Lazarus, dying to rise again.

You are…

you are in good company. 

Make no mistake- it is a broken, fallen world. But you? You are whole. You are complete. You are loved. You are salt and light. You are life, through Him. Stand up. Dust off your weary bones. Raise your hands high in surrender and thanksgiving. Renew your steadfast spirit. He has given you a clean heart today.

Turn around and see us- your family, your friends, your faith. We are behind you, we are beside you, we are leading you by the hand.  We will do any or all of those things for as long as you need.  We love you.  And, we know.

He knows. 

Your family’s pew in heaven is filled with gorgeous children who never knew hurt, and for that… if only that… we are grateful. They are saving your seat and singing so loud.  For now, we will grieve and we will walk and we will pray.

love and tears and everything in between,

every day,



Y’all gonna make me lose mah mind.

Abby was the last of our family to go through the Fever and the Stomach Bug. It was ugly. One day just after Christmas, she took an exceptionally long afternoon nap… you know, the kind you take when you feel like death. After that day, she did not take a morning or afternoon nap again until yesterday.So, not since 2012, People, has that child slept any kind of normal.  Yesterday was the first day- THE FIRST DAY, she has taken a nap and slept through the night. I feel like I am 47 years older.

Rylie learned how to say the word ‘tomorrow.’ It sounds like Two-Mah-Woh, and it’s gorgeous. Seeing my window of opportunity, I put Annie in the dvd player and cued up the song. She was shocked and thrilled… and I cried. Her re-entry into school has been ROUGH since the holiday break. We needed some happy tears around here.

Gus put Abby in the dishwasher and closed the door yesterday. “Mom. Abby wash.”  There is 2 week old clean laundry piled up on my couch and I never gave Ry’s teacher her Christmas gift. Y’all. 

What in the world.

What I need is some time away… to myself. Perhaps with other woman who know me. OR perhaps with other women who DON’T. I need to go on a retreat, be fed, hear some good words, learn, be taught. Spring Bible study started this week at church, but I need baby steps. It’s been a long time since I’ve been untethered from this house and a deep commitment absolutely terrifies me right now. I simply don’t have the right jeans.

Some of you know exactly what I’m talking about.

Some of you don’t, and that’s ok… we just can’t be friends today.

So, let’s start small.

Let’s start with a couple hours spread out over 2 days in April.

I can do that, right? You can do that.

It’s (in)RL hosted by (in)courage.

I love it. What is it? 

(said every mother everywhere every day)

Simply, (in)RealLife is a webcast on Friday followed by a local get-together Saturday.  It’s a chance to anchor those beautiful online relationships you’ve made by meeting TOGETHER and in person.  (in)RL was born out of two years spent listening to women in the comments at (in)courage craving local, real life community. Derived from the social media acronym “IRL” or “in real life,” (in)RL is an invitation to share what we’ve learned about community and encourage women with stories and suggestions for connecting deeper in real life.

Think of it as a FREE girl’s weekend away that doesn’t require packing or plane tickets, where women can kick off any expectation of perfect, set aside their fears, their shyness, their worry that they’re not good enough, and find some of Jesus’ words of rest woven into every video shared here.

The (in)RL webcast kicks off on Friday, April 26 and (in)RL meet-ups follow on Saturday, April 27.

(So, Friday is you at home in your jammies with some hot cocoa watching the conference online. Saturday is you heading out into the city and meeting up with other Ladies in your area to meet and hang out and… be awesome.)

This year we’re taking a closer look at what it takes to stay rooted in community when sometimes just walking away would be so much easier and tons more convenient. Women share stories of how they’ve chosen to stay through hard marriages, challenging parenting, worthwhile friendships. How choosing to stay has freed them more fully and unexpectedly than if they’d cut and run.

Relevant, yes?

So, let’s sign up. Let’s put ourselves out there and see what happens. Let’s see what God does when we step out from behind the computer and walk through an open door. I’m scared to death, really. I mean, leaving the farm and putting myself out there is not number 1 or number 2 (or number 12) on my list of awesome. But I’m gonna do it. Even if it’s just me and some Beautifuls I know but never get to see.  Even if it’s 5 women on Saturday that I’ve never met before in my life.  I’m doing it.

And don’t think I don’t hear you laughing at the awesomeness that is the topic for this year: commitment in difficult community. It’s like it was made for me at this point of my life, yes? I know, I know.

Sign up to attend or host a gathering in your town HERE.

(in)couragement for (in)ablers

Today’s post comes from Tif, who writes regularly about family life over at MIDST.

Do You Hear What I hear?


“’Tis the season to be jolly… Falalalala… la la la ala la.”

I sing (under my breath) with the utmost of sarcasm.  How can we be jolly… with all this “stuff” and with all this “noise” around us?  As children we are surrounded by the excitement, the traditions, the little happy spots of the holidays.  We have parties, ice skating, parades, lines for Santa, cookies to bake, neighbors to sing with, and of course, the Christmas pageant.  All these things we loved as children made the season so bright in our eyes.  Now, as moms, we want to share that same giddiness, that same excitement, with our own children- so we pile it on.  Why not, right?!?!  “The more the merrier,” isn’t that what “they” say!?!

I remember the spark in my first son’s eye… the wonder of it all…. The staring at the colors and lights, the chewing of ribbons and hiding in boxes.  Having a child changed my life.  It changed the way I saw Christmas- seeing it through a child’s eyes again made me feel young at heart… and in such awe.

Then Bjorn was born.  He was a boy who would hide away in his room all day long; he had no desire to interact with others.  He could sit in his room, in his quiet safe space, never speaking. Never connecting. Never touching.  A boy who could disappear from it all…. living in a space of void.

As a mom of a special needs child, my life had changed from experiencing life with my child to advocating for him.  I sought out what was best, what might work, and worked through all of the trial and errors. All year long I fought for my child-  for his voice, for his touch, for his very existence in a world where relationship and connecting is key.

Then the season of Christmas came- and I want so much to share this season of “jolly” with him.  I froze… How?  How did I bring a world of big, bright, loud, full, crowded, and more into the life that desired routine, structure, calm and quiet reign.  We had a problem…  our two worlds collided….

Our first three Christmases, Bjorn never joined us for more than 5 minutes.  He would open one present, walk away, and go back to his room.  We rarely went out, we never went to parties… and decorations never came out until two days before the 25th.  I was sad.  Not just for him, but for (I’m being honest here) myself.  Here I wanted to “do” all these things… to experience all these with my boys… and I couldn’t.  Let’s be real here… I was having a holiday pity party with the table set for one- me!

Then I began to pray and pray and pray.  How was I going to bring the Light of the World to my child who didn’t know how to be part of the world? I then began to listen.  Listen to my son. Listen to my Lord, and listen to the Truth.  It was amazing what happened when I took my eyes of what I wanted and looked at what my son needed.

This is what I heard… STOP.  SIMPLE.  SHARE. And BE.

The first thing I learned was to STOP.  Just STOP.  I had to stop my expectations for what I thought was important and begin to listen (really listen hard) to what my son needed.  This listening was hard to do, because it meant putting myself in his place, a place I had never known. But I had to listen to what he heard during this time of year. Once I did,  I was shocked when I figured out he heard a “hum”, a hum that was loud, piercing, and really painful. It wasn’t an audible hum… but a hustle-bustle type of hum that scared him.  At times the hum was so inaudibly loud that he would just cover his ears, wanting it to disappear.

The second thing I learned was to keep it simple.  Simple meaning…. Not too much, and as little instruction as possible.  I would plan one activity for that season… one thing that would show him the “holiday spirit” and invite in the story of our Savior into his little life.  Simple and sweet….  If it went well I could add the experience to the next year.  Doing this was allowing him to process, to digest, and to experience at his level.  Honestly, sometimes his process time took weeks… weeks!  So, in the Spring he would say something about Christmas that would knock my socks off – and that is how I knew, giving him too much never gave him the time to process the experience- but once he processed it, he could relate to it.

Thirdly, was to share.  I talked and talked and talked.  I shared about what we were going to do, when we were doing it, what it was going to look like and what possible surprises we could expect.  This was intentional preparation… basically “covering the bases”.  I also shared with him the safety things he could do if he was overwhelmed or needed to communicate that he was not feeling right.  We began to set up a signal that he could make if I needed to get him out of the room to a quiet area for him to just seek out the calm he needed.  I became his trust…. He knew that he and I were a team, and that I had his back in times of trouble. This moment was huge for us!  HUGE!  (side note- make sure you keep your sharing simple too. Limit your words to 3-5 word sentences. Be direct and to the point.  As a mom, I always forget this rule… and over share… you know… the TMI rule.  With Special needs kids… there is such a thing as TO MUCH INFORMATION! Trust me.)

And Finally… BE.  Be in the moment. Be Christ to your child. Be the gift that the Lord gave to us… Be your child’s hope.  Be your child’s love. And Be your child’s peace.  May we all see the season as one that is focused on BEING with each other… Once I realized that the holiday season was not so much about the excitement of doing but in the magic of being, it wasn’t my son who changed… It was me.

Now I sing a new song… a song that is beautiful and perfect…

It is one that rings “all is calm, all is bright”.

[(in)Able is a community group for moms of kids with special needs.  We’re a part of a larger group of women in all stages of life over at (in)courage.  Every other Wednesday, you’ll find a letter here specifically (in)couraging and (in)abling women in their journey as a mom of kids with special-needs. You can join us daily HERE.]

(in)couragement for (in)ablers

Rachel is a child of God, blessed wife and stay-at-home mom to three, the oldest of whom has a variety of needs surrounding her visual impairment (resulting from her severe prematurity), ASD, and mild intellectual disability.  She blogs at This Journey Our Life, to share her personal journey of special needs parenting, encouraging others who find themselves on a similar path.

Running to Him

Desperate for help, I felt the urge to run.



The walls of my world were caving in around me. Helplessly, I looked on at my daughter who needed to be rescued.

“Will somebody please help me?” I tried to cry out. Instead, my throat choked on its scream.

It was like those nightmares where you want to run but your legs won’t move; where you need to scream, but you can’t.

Silently I stood back.



My daughter was slipping away, and there was nothing I could do to stop it.

She needed help.

But it’s hard to help when you don’t know how.

I scanned the crowd, searching for someone who would stop to offer their assistance.

If someone shows me what I need to do, I’ll do it! I thought.  Anything to save her.

Why isn’t anyone stopping?  Why doesn’t anyone care?

Weary from searching, I wanted to give up.

These were my feelings throughout a large part of the past school year. Overall, Cami’s struggles had grown more complex, and every solution appeared impossible. Help seemed out of reach.

I was frustrated and fighting despair.

But a phone call changed my perspective and brightened the pathway I had been trudging along.

Immediately following a difficult conversation with one of Cami’s teachers, I called my mom.  In between heaving sobs I updated her on the situation, sharing the most recent struggle.

Answers were uncertain, but I knew my daughter needed help.

I needed help.

I told my mom, “I wish it was as easy as running outside to a crowd of people and screaming at the top of my lungs:


Her response hit me hard:

“Rachel, it is.” 

The truth of her statement sent chills down my spine, and my throat tightened as more tears spilled down my flushed cheeks.

There is someone Who is waiting to help. Someone Who will show me what to do.

That night I ran to Him.

And still I run.

{Proverbs 18:10}

The name of the Lord is a fortified tower;
the righteous run to it and are safe.

[(in)Able is a community group for moms of kids with special needs.  We’re a part of a larger group of women in all stages of life over at (in)courage.  Every other Wednesday, you’ll find a letter here specifically (in)couraging and (in)abling women in their journey as a mom of kids with special-needs. You can join us daily HERE.]

(in)couragement for (in)ablers

Today’s post comes from sweet Kaylee Page.  Kaylee (and husband, Dan) have one daughter, Miss Bella, who lives in a world of FPIES, EoE, Delay in Gastric Emptying.  Kaylee works full-time at Start Garden and fine-tunes plans to take over the world while driving to doctors’ appointments.

‎Strength and dignity are her clothing,

And she smiles at the future.

Proverbs 31:25

The version I read years ago said “laughs at the days ahead.” How odd, I thought. How can you laugh at what you don’t know. It took me a while to realize that this woman, this Proverbs 31 woman, had a deep trust and understanding that God was and is in control. She can do this little internal, perhaps sometimes audible laugh. But not always the type of laughter we think of laughing at a quick joke. No, it’s a laughter that’s like a “Ha, only you, God. Only you could make this story beautiful, funny, unbearable, full of suffering and sorrow, but amazing, and honest and good, and weird, and humorous and comical and full of miracles. Create moments that take my breathe away. Only you know what would set me off today. Only you know what my heart needed today. Only you could design a life to make me more like you. Somehow, only YOU could write this journey.”  It’s the laughter Sarah had when she found out about Isaac. It’s gratitude. It’s the relief. It’s the fact that she’ll be a grandmother’s age at story time with all the other young, hipster moms. Or I can imagine Mary, the mother of Jesus, had a similar laugh when the Angel Gabriel told her about having the son of God – knowing, the honor and yet the difficulties this would all bring.

So today, ladies, you are clothed with strength and dignity. You are amazing! You are worth far more than rubies. Lord truly knows, you’ve gotten up while it is still night and provided for your families. You set about your work vigorously; your arms are strong for your tasks. You are a virtuous woman indeed! And God delights in you.

He is proud.

May you have moments that make your heart light today. May that light-heartedness come from a deep, intimate trust and understanding that God is in control. The days to come are, each one of them, going to be okay. They may be better than okay or they may be quite difficult. Whatever steps they may be, they are the beautiful steps he’s laid out for you. Tough as they may be, smile. Not a fake, plaster smile. The smile that totally gets heartache, pain and disappointment. It’s the smile that creeps up for some reason in the middle of the sobbing. It’s the smile that creeps up when you watch your child grow and accomplish something new and exciting. It’s the smile that’s the deepest breath you can imagine. It’s a smile that calms your heart, soothes your soul and gives you the unimaginable peace your heart desires, even if but for a moment.

Praying for your hearts today. Praying for the smile to creep up on you. But also praying that if your heart is just in no way close to being able to smile, that God would rest deep within you, settle His way in. That if the smile is impossible, that at least there is a moment of rest. The rest maybe needed to get you a tad bit closer to that smile.

[(in)Able is a community group for moms of kids with special needs.  We’re a part of a larger group of women in all stages of life over at (in)courage.  Every other Wednesday, you’ll find a letter here specifically (in)couraging and (in)abling women in their journey as a mom of kids with special-needs. You can join us daily HERE.]

(in)couragement for (in)ablers

[(in)Able is a community group for moms of kids with special needs.  We’re a part of a larger group of women in all stages of life over at (in)courage.  Every other Wednesday, you’ll find a letter here specifically (in)couraging and (in)abling women in their journey as a mom of kids with special-needs. You can join us daily HERE.]

Today’s post is from dear, sweet Missy.  You can find Missy writing anonymously about the mishaps of daily life with an Engineer, a child with an Autistic Spectrum Disorder, and a preschooler who’s convinced she’s 14.  She is a Southern transplant living the dream in the New England area.  The mishaps are a’plenty.

The Way We Roll

We felt like we were rolling along pretty well; my husband and I.  I had just delivered our first child, a boy, and we were euphoric.  That first year and a half rolled along beautifully.  And then, things changed.  We hit some bumps in the road and began to pursue a medical diagnosis for our son’s delays and behaviors.
“Your son has a form of Autism called Pervasive Developmental Disorder – NOS, with a Global Developmental Delay.”  They were, by turns, words we were expecting and words we were taken by surprise to hear.  Parenting is a journey.  With the pronouncement of these words, we now saw, at the very least, that our journey would include some mountainous terrain.
Since the time of our firstborn’s diagnosis at age two, we’ve been struggling to make it work as the parents of a child with an Autism Spectrum Disorder.  As with all things in the life of a Christ Follower, we were and are totally dependent upon our God to see us over every bump, hill and mountain. And He does not disappoint.  Looking back over the last 7 years, since that initial diagnosis, we can see where God has gently nudged us this way, and that; times when He allowed our momentum to flat out fail so that we would be dependent upon Him to get us going again; and people that He has provided sweet friendships with, to soothe the feelings of isolation.
We were recently acknowledging how very grateful we are to be this child’s parents.  God has enabled us to provide for his (and now his little sister’s) needs, emotional and otherwise. I’m able to forgo my teaching career to stay at home right now.  We are able to provide stability for this child that craves routine and structure.  God provided both a “feeler” and a “thinker” in this parenting team. Our daily prayer is that He doesn’t let us get rolling too far down either one of these paths; and that between the two of us, we’re providing a pretty good team regarding our parenting of this special child that God has given to us.
Does that mean that we get it right all of the time? Definitely not!  In fact, our parenting journey has been downright comical, as we are two very messed-up individuals (see earlier admission about having one thinker and one feeler!) trying desperately to get it half-right as often as possible.  Our reliance, though, is not upon ourselves. It is upon The One from whom all wisdom and grace flow. That’s Who keeps us rolling along. When we think we can’t possibly go one more round of the “how in the world do we get through this stage?” parenting game, He’s right there.  We can sometimes literally feel Him pushing us forward, prompting us to simply love this kid; and to keep moving forward one moment at a time.  In faith? Yes. But also, in the assurance that He’s got our back.  And that He’s gone before us.  He’s got this.  He’s got us.
“ The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.”   
Deuteronomy 31:8 (NIV)
And when we get stuck in a rut during a particularly difficult parenting moment, we have to remind ourselves to rely on God to get us through. It may not be the smoothest ride, but as long as we’re relying on His strength, we’ll keep on moving forward.  Andthat’s the way we roll.

(in)couragement for (in)ablers

[(in)Able is a community group for moms of kids with special needs.  We’re a part of a larger group of women in all stages of life over at (in)courage.  Every other Wednesday, you’ll find a letter here specifically (in)couraging and (in)abling women in their journey. You can join us daily HERE.]

Rearranged by God’s grace and Kernicterus, Miriam works to help the world see the bright boy in the body that doesn’t work, to raise his 2 busy bee little sisters, and of course have something, anything, left for the husband she adores! You can find her over at A Rearranged Life.


I’ve never loved math.  I stumble around numbers.

And yet…there is a part of me that has never stopped adding. I did this before I could count.  I counted negatives.  I measured out injustice.  “Hey!  He got a bike for Christmas and I just got clothes!”  I wasn’t the most miserable kid alive, but when things went wrong I didn’t pretend everything was peachy.

Looking back, I see how the counting revealed expectations and entitlement.  Forks in the road were hard.  I dug my heals in when God didn’t provide what I wanted  things like:

going to the college I wanted to go to,

getting the job I wanted to get,

My good friend living to old age,

having the honeymoon that I had planned (it was a disaster that might make you laugh and cry…or throw up!   Let’s just leave it at…we never made it to the Bahamas!)

Then Kernicterus came.  Picket fences fell.  When he was just days old, my little boy had lost much.  I held close to Jesus.

In those shattered days, I wrote:

“You have filled my heart with greater joy than when their grain and new wine abound.”

– Psalm 4:7

There were so many abilities lost.  …hearing, speaking, walking, writing, eating…

But I knew there was greater joy to be found – greater than the merriment that comes in prosperity.  This had been in my head long…but now it was time for it to start working it’s way to my heart.

No easy task.

I sought The Lord.  I grieved.  I cried out in prayer.  Yet that old practice of adding negatives was is always begging to be done.

And this is no overnight journey.

It’s not like that.

I’m grateful for his patience as I grapple with these truths.

In the early days, my goals were: survive, seek God, pray, bear through the hard things, trust Him.

Good goals.  I amend them with time.


Last year, in a ploy to get the UPS man to pick up a package, I ordered her book.  A friend had suggested it many times, and finally, I ordered it.   One Thousand Gifts, by Ann Voskamp.

It took me a couple nights to get through that first chapter.  Tears came too easily. The story isn’t mine, but those raw emotions, the living on edge, the shadows of grief that never slip away – I know those.

In the months that followed, Ann’s words echoed the scripture:

“Enter His gates with thanksgiving, His courts with praise!”

Ann’s friend challenged her to write down 1,000 gifts, and her journey to give thanks, in the hard things, in the broken things – it became her book.

Her challenge came across the continent to me loud and clear.

Only, I’m not sure I wanted a challenge.  Didn’t I already have enough?

Could I do this?  In all of the “special” of our life, could I find the time?  In the grief that peeks it’s head out often?  Fight for joy?!

I took the challenge.  I had to.

If Christ gave thanks in the moments before he offered himself on the cross, if scripture commands over and over to give thanks, should adding negatives be my focus? Is mere survival the real goal?

How do you fight off the old math?   When the tantrums won’t end?  When work is scarce?  When bills add up?  When you have nothing left for your spouse?  When friendships are hard?  From the ER?

I’m not sure it will ever be easier to add positives, but it will always be better.  It will forever be the path to joy.


I have to put words onto something…a computer screen, paper, my phone…I have to record these “thanks” to condition my heart to see…really see them.

Without taking note, I pass by much too quickly.  I forget that the gifts were ever there. Surely the painter sees the flower better than the passer by?   – takes more joy in the object?    Remembers the lines and shadows with more clarity?  The photographer must enjoy the landscape more than the tourist. 

Giving thanks brings joy.  It brings delight.

Thanksgiving is a call and one we must take seriously if we want to be happy Christians.

If you take the challenge, if you take time each day to write down a few items you are thankful for a day – it will change you.

It will put you on your knees.

It will grow and feed the joy that comes from Him.

You will learn to enter his gaits with thanksgiving.

This is a challenge every special needs parent needs…every parent needs…every person needs!  Challenge your heart to sing his praises – in the hard – in the weary – challenge your heart.

One thousand times a day I choose to count the unmet expectation or the gift.

I choose whether to add up the negatives or sing praises.

I choose joy or misery.

Do I make the right choice half the time?

I need to lay low.  Gifts flow down.  Grace flows down. I’m in no position to receive his good gifts unless I bow lower and look more closely at His “good and perfect gifts.

His word sinks deeper from head to heart when we bow low.

I’m not sure my eyes would be so open to the joy of syllables uttered together – if I didn’t know the pain of seeing them taken away.  Would I cheer to see my boy swipe everything off the counter without wondering if he would ever have volitional movement?

There are fathoms of joy that I didn’t know existed until I fell into living with loss.

Expectations winnowed away, all is gift.

All is grace, even and especially in special needs.

When I count gifts, there’s not so much of me left to add the negatives.  “Greater joy” floods in warm when I make room for it with gratitude.

Do you count?  What is your default posture? 

The LORD is my strength and my song; he has become my salvation. He is my God, and I will praise him, my father’s God, and I will exalt him.

Exodus 15:2

(in)couragement for (in)Ablers

[(in)Able is a community group for moms of kids with special needs.  We’re a part of a larger group of women in all stages of life over at (in)courage.  Every other Wednesday, you’ll find a letter here specifically (in)couraging and (in)abling women in their journey. You can join us daily HERE.]

Today’s post comes from my lovely co-leader, Kaylee Page.  Kaylee (and Dan) have one daughter, Miss Bella, who lives in a world of FPIES, EOE, Delay in Gastric Emptying.  Kaylee works full-time at Start Garden and fine-tunes plans to take over the world while sitting through doctors’ appointments.


Jesus knew “the plan”.

He knew it was a’gonna happen.

So…. I wonder if by asking for the suffering to be taken if he was asking for a different plan or if he was just asking for the suffering and emotions that comes with going through the plan to be relieved? Sometimes God graces us with this unbelievable amount of peace and joy (beyond the circumstances) and sometimes, no matter how hard we try, we are left broken, wrestling, anxious, grieving, mourning, confused – the feelings associated with “the plan.”

(Some may argue that the Holy Spirit wasn’t “around yet” to give this peace so I wonder if maybe Jesus’ plea was maybe the first request for the Holy Spirit to come down and be with us through it all in this miraculous, inexpiable way! Maybe?)


It’s amazing to me, how different life can be, from what we dream and plan… hope for… expect. It’s earth-shattering some (even a lot of) days. And so hard to embrace the God’s message of finding joy, accepting that this was just His plans, to “take comfort and rest in Him.”

Is this message for me? What if finding joy was different before becoming a mom? What if joy these days means that the only thing I can do is breath? And that breath, well it’s the only joy I can muster up, but I’ll take it. Today I breathed a breath full of peace (even if just one breathe, so be it, I’ll take it!)

Oh I trust God. I do. No doubt about it. And I get that someday I’ll get a “well done!” But, right now. Today. I’m tired. I’m so excruciatingly and painfully tired. In every way possible — my mind, body and soul is worn out.

As mothers of children with special needs we suffer a great deal – even if we wouldn’t change the story – or maybe we would – either way, we suffer.

I wrestle, struggle and “suffer” — with the fact that caring for my daughter isn’t just a “get through this today and tomorrow will be better” (like a cold or the flu). She may outgrow some of her issues but it will in some way affect her the rest of her life. That thought alone is exhausting! (not to mention how it affects our every day life in every way – we can’t just go out to eat, go on trips without packing every little food item she may need – and OH THE VOMIT. The vomit. It’s all the time. I live in fear of the next episode. A simple cough rears my head – every time.).

To all you (in) able mothers out there with kids with special needs – your child has impacted your life in countless, absolutely countless ways. Take a moment and speak out load those ways! And let me tell you, it is okay, in face you have all the permission in the world to let tears flow as you name those ways.

You. Are. Not. Alone! I’ll admit, it sure feels lonely though. I think meeting other moms who get it is so comforting — but still — there is a void, where you are the only one who knows exactly and completely what it is like to be your child’s mom. You know what every second, every moment, every breath, every appointment, every milestone – every setback, every doctor appointment, therapist and teacher appointment and meeting…

You know your child. And only you know your child like you do. It’s beautiful and a bit overwhelming both at the same time.

Take this cup of suffering? Jesus cried. Give me peace. Give me joy. Guide, help, assist, lead, create in me a steadfast heart despite the fact I am hanging on a cross… OH GOD! Help me. Hear me.

You too? God, take this suffering? Take this fear, this worry, this sorrow. It is different than I planned. But please, guide me, help me, assist me, lead me. Create in me a steadfast heart in all of this. Oh God, my God! Help me. Hear me….Hold me! Because hanging hear, going through this, I need you. I desperately, wholeheartedly, need your strength to press on and through this life.  (Amen).


I was praying for a friend whose precious child has special needs. I asked God what He would want to say to my her. The verse Come to me all who are weary and I will give you rest came to my heart.

Almost comical, no? This would be the verse He gives me. We, mother’s of kid’s with special needs, are tired and need rest — but I’m not sure we always allow ourselves the grace and space – the permission really – to be tired.

But then I also got the phrase Let my face shine upon you. I thought and prayed more about it on my drive into work that day and I got this feeling that God wanted my friend to just basque in His love. Sort of like sunshine warming her face. Eyes closed, face up to the sun. Comfort. And I felt like He wanted her to know that she didn’t and doesn’t have to earn any of this. That he just really deeply desires to give this gift of rest and warmth to her.

Praying for my friend made me realize I needed the same things.

Laid, I think he wants to illuminate us with his love.

Depressed? But not like any sort of depression you’ve felt before.
Tired? In ways you can’t explain.

I get it. The way you feel. I totally get it. Not exactly like you experience it, but I still get it.

The therapy.
The worry.
The tears.
The sleeplessness nights.
The paying of bills.
The meetings to inform and educate.
The endless phone calls to schedule the next step.
The obsessive thinking about it all.
The desire to feel alive again – but the awareness you’re too tired to try – thus, you
wonder if you do desire it.
The awkward conversations.
The marriage that often takes a back burner (even though you don’t want it to)
The second look at your reflection and bags under the eyes.
The desire to re-invent yourself.
The wishing it were different, somehow, just different.
The nothingness that exists in this season.


I’m confident that He will resurrect himself in us again – even if it’s not for a long time. Not one ounce of our journey and our story will be wasted in his kingdom. No matter how exhausted, worn out and frustrated we are here, I’m confident it equals strength, beauty and character in another world – in his Kingdom, where there will be no weeping or mourning anymore.

Friends! Today, this very moment… May you stop. May you tilt your face to the sky. And may you allow him to permeate every ounce of your being. May his love cover you, coat you, embrace you, penetrate deep into your heart, breathe life into your soul, steady your mind and soothe the stormy waters.

Yes, may his face fully shine upon you today.

Grace + Peace.