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.

specialneeds

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.

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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.

hayride2

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.

hayride3

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.”

hayride1

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,

me

air


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?

carol-singers

“’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.

Somewhere.

Anywhere.

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.

Waiting.

Watching.

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:

SOMEBODY PLEASE HELP ME, SHOW ME WHAT TO DO!” 

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.]