Love…you

Right now.

Bella’s formula comes from a medical supply company.

And her snacks are ordered from Amazon.

I keep joking that some day I will be able to just go to the grocery store to get this girl some grub.

 

But for now, it’s phone calls to get prescriptions (yes, prescriptions) for her formula and online ordering.

 

I’m currently on my fifth attempt to get Bella her formula. Fifth.

 

First attempt. Got dropped off on our front porch and sat for days while we were out of town for the holidays. (Labels says DO NOT FREEZE!)

 

Second attempt. I called and explained that we needed to figure out how to get a delivery when someone was home (maybe have it dropped off at work?). Right, someone will call you back to figure this out, they advised. 2 days later, another shipment gets dropped off at our front door step (and then left out for hours while we were yet again away for the holidays).

 

Third attempt.  Hi. I’m Kaylee. I need to place a re-order for Bella Page. But. Ok, and I don’t want this to sound mean but I NEED for this to not just be shipped. What I need is for you to ship it to my work address so that I can get it and keep it indoors. I’ve already tossed two shipments (and that’s a LOT of money for you folks!) So please. And thanks. And seriously, I’m not trying to be mean. It just needs to be right. We’re getting a bit low on formula. So I need this shipment to work….MAN ON OTHER END OF PHONE TAKES MY INFO, PLACES ORDER; ALL WHILE I SENSE A TINY BIT OF ANNOYANCE ON HIS END…. Okay, lady. You’re all set, He says.

 

Me, typing away a work email, responds: Love….you…

[DRAMATIC PAUSE TO LET IT ALL SOAK IN]

 

No good way to end that awkward moment. So I just hang up!

It was a slow I love you. Not quick. Not slurred.  It was long, clear and…. awkward. Really awkward.

 

Fourth attempt. The local distributor prefers we use their national center for shipment as they do not keep the formula on hand (mind you, I’m limited who I can order through as insurance has approved distributors). To handle the mistake of the two first orders, the local distributor drops off a shipment. Thank you, kind nurse, who went out of her way to drop this off on a Friday after work!…. It was expired.

 

Fifth attempt. Nailed it. BINGO! All set. Formula in hand. Not frozen. Not expired. NAILED IT.

 

That said, being a mom to a kid with special needs.

It is a world in and of itself.

 

You throw out typical parenting books.

Finding parental guidance – finding community — is hard (yet a must)

 

You spend hours doing your own research only to find out the doctor claims to “know” your doctor more than you do. Bless doctors, for the smarty pants they are – for the knowledge and expertise they have to offer your kid — but they at some point, belittle, ignore, forget, neglect to look at your kid’s chart before or during an appointment. They are busy. They are a doctor to many.

 

You cry. A lot. More than you ever thought you could. You cry to grieve. You cry with joy. You cry because you —- literally — are going to lose-your-mind.

 

You spend hours in waiting rooms, at doctor appointments and at therapy.

You fight hard. For everything: for their education, for financial support, for their development.

You advocate. To have your child notived. To have your child heard.

You. Often are the only voice they have.

 

You watch. analyze. critique. Wonder-dream-and-hope for signs of growth and development.

You worry about their future in ways you never thought you would and you fear deeply about what will happen when you’re gone.

 

It’s alarmingly different than you could have ever imagined.

It can sometimes make you laugh.

But most days you just try to survive it with grace and poise.

 

Oh formula guy, I do love you. For helping me get what my daughter needs. 

And for the good laugh I got today.

It was awkward for you, I’ve no doubt.

Please know. It was no more awkward for you than it was for me.

Send me your address and I’ll get you a proper apology in the mail. And, next time I promise to keep it professional. Promise. 

Just keep sending that formula!

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

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the art of unfolding & resting

Driving to work today, radio on, I heard:

 And what was said to the rose to make it unfold

Was said to me, here in my chest…

This line specifically:

What was said to the rose to make it unfold.

Whenever I hear it, I stop dead in my tracks.

There is a sacred pause…The mystery and magic of this line makes me weak in the knees. I just want to take a deep breath and soak it in all over again like it’s the first time I’ve heard it.

I’m sort of an arm raiser during praise and worship. Not every song, not every Sunday. But it happens. When something moves me enough — I throw my hands up in the air!

Why the automatic response of praise is to often raise your arms has always baffled me.  Seems like such a funny thing that our bodies just know what to do when we’re moved…

All of us opens up.

But if the mastermind behind the flowers is the mastermind behind our souls I guess it isn’t all that crazy.

His voice. His mystery. His beauty.

It makes things unfold.

Flowers.

Hearts.

There’s an art to the blossoming.

Flowers don’t just flop open in the morning.

Nope!

They ever so slowly, ever so patiently, unfold

— displaying endless beauty for all to see.

Sometimes I forget this art. The art of opening up.

If flowers don’t flop open, why do I think my heart would just flop open?

Maybe there are times my heart swings open it’s doors to take in the world.

But other time, I am slow. Just like a rose.

I unfold.

Roses are the perfect image of God’s work on our hearts. His love slowly unfolding the mysteries of our hearts

— with each beat of his love in us we open up just a bit more. 

Until we unfold. Fully and openly.

We open up to display all our beauty.

…….

This morning, the next few words that follow in the song struck me — I’m usually so caught up in its preceding lyrics that I miss this:

… so be quiet now and rest

Anyone ever watch a rose (or any flower for that matter) all day?

Doesn’t do much.

It opens up.

And then it just basks in the sunlight.

All. Day. Long.

Apparently. Roses know how to rest.

And maybe God wants us to be more like roses.

‘Cause if we were.

We’d open up.

And then we’d just bask in the warmth of his love.

All. Day. Long.

I forget this.

But today…. I stopped and smelled the roses.

….And they were a beautiful reminder to unfold and rest.

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

He chose you.

Girls in pretty dresses with their dads.

THIS. An absolute beautiful vision to see.

It started as a thought and led to an event — turned backwards in my movie theatre seat I exclaimed to Josh Bishop, youth pastor of our fifth & sixth grade students at our church:

Let’s host a daddy-daughter dance!!

And that was that. He agreed. We were going to plan an evening for daddies and little girls to connect.

And we did. And it was lovely.

The night included a spaghetti dinner (spaghetti is great on the event budget, by the way) and swing-dance lessons (a priceless sight to see!).

There was a moment, during the spaghetti dinner, where Josh welcomed folks and chatted a bit about the special relationship between a father and a daughter.

Then he said this:

Dads, you didn’t get to choose your daughter; her personality, her passions, her strengths, her hopes and dreams. You didn’t get to choose.

Girls, you didn’t get to choose your dad; how he will love and care for you, how he will pursue you, what he loves to think and do. You didn’t get to choose.

He continued to say:

But! everyday you get to choose to love each other. 

We try to control our children.

And our children try to control us.

Some of us would like to think we don’t try to control our kids, but control can be as simple as wanting them to color Cinderella’s hair yellow — because Cinderella is a blonde! But maybe they grab the purple crayon? And in this moment, do you push the yellow or do you let Cinderella show up to the ball with purple hair – sassy and full of spunk!

Control.

Or choosing unconditional love.

It’s a choice.

Everyday. 

Some control is natural, normal and we’re even called to discipline and raise our kids. We’re supposed to mold and shape them. But our children are also a very specific and special design of God’s own desire; to be watered and nurtured to grow into the best version of who they were created to be.

If ever you feel like maybe perhaps your child is different than you wanted, it’s okay.

Go ahead and say it. This may give you permission to actually see who they really are.

If ever you feel like you would have maybe chosen to write the story a bit differently, it’s okay.

Go ahead and say it. This may actually give the vision to see outside your plans.

….

My mom has led a woman’s retreat for several years at her church. One year, there was a mom who had three children, all of who have special needs. The condition they all have is something where symptoms didn’t show up until the children were a bit older so they had the three children before they knew it was gentic.

At the retreat the mom shared:

You know, for years I wondered — God, why me?

Over the course of the weekend God whispered gently and quietly to her heart:

Who better to raise them?

In parenting, there will be difficult moments; these moments will be: disheartening, disappointing, . and full-out heartbreaking.

And we wonder why.

Why us?

Why them?

To those of you who today are wondering why?

BECAUSE, WHO BETTER THAN YOU!

Everything you are and everything you have to offer is exactly what your child needs.

In fact, of all the women in the world God choose you: your personality, your temperament, your strengths (your weaknesses!),

You didn’t get to choose.

Your child didn’t get to choose, 

But God did get to choose

… and he chose you.

 

• Kaylee (and husband, Dan) have one daughter, Miss Bella, who lives in a world of FPIES,EoEDelay in Gastric Emptying.  Kaylee works full-time at Start Garden and fine-tunes plans to take over the world while driving to doctors’ appointments. •

blessed by Bella

I spotted.

Just now.

This means I’ve been on progesterone 3 months and I am not pregnant.

Am I sad? Indeed.

But, waiting for a baby hasn’t been..

*PAUSE*

It just hasn’t been as painful as I thought it would be.

I’ve been trying to unpack my feelings on this.

Asking myself if I’ve just stuffed my feelings.

What I’ve realized is….

Bella has taught me one thing and one thing real good:

This too shall pass.

I am not a patient person (though I work on it).

And I am not good at not getting what I want (ask my parents!).

I’m a bit baffled as to why I’m not a hotter mess waiting for another child. To some extent I know for a fact it’s because of all those praying me through this. There are moments where I literally feel the prayers said on my behalf holding my head above water when it would have be so easy to slip and let myself drown.

But.

But what I really realize. Is that the gift I have, this special gift of unexplainable peace and patience.  This gift is because of Bella.

With her FPIES and EOE we face years of being patient. She may outgrow FPIES by age 3 or 4 (or she may not).  Her soy reaction was at 9 months. So right out of the shoot, we had 2-3 years ahead of us of not knowing….and waiting.

And…this period of waiting has taught me, how to wait.

Like I said, waiting for a baby month after month, would have drowned me in sorrow and anxiousness; prior to Bella.

I have moments and days where I cry (usually Day 1 of my cycle!).  But generally speaking, I am doing ok.

Thing is. I’ve learned how to tread water. Before Bella, the boat would have gotten rocky and I would have fallen apart and drowned simply in the vast amount of my own tears shed.

But now, it seems the boat can rock, toss me out and I can be in deep, deep waters….and yet… I can tread.

Now hear me out. I much prefer to be in the boat, with a cool beverage and sun beaming on my face – much prefer. But and since, rough waters is what I’m facing, I can tread.

I will tread.

And please, do know, I am in rough waters.

It’s not easy waiting. And with every arm I push out to keep myself afloat I am weary. With every breath I take to bob along the water or with every push of inertia to excel over a wave coming my way, I find myself tired and worn.

And let me tell you, I have NEVER in my life been so interested in my own nipples. Or my body, in general, for that matter.  If you’ve tried for a baby you know what this odd fixation is; this thing where you wonder many’a moments if you are pregnant so you read every potential sign your body may be giving you.

Did I just pee more often than usual?

Was that a mood swing (or do I need to sign up for anger management?!)

Am I tired, tired – or have I just been on my feet since 7AM?

You get it. And I’m stuck in it. Just because I’m doing ok waiting doesn’t meant I’m not waiting; looking for signs that this season will pass.

But. In the midst of the weariness I feel strength.

(LEMME tell you, waiting is work!)

But this? This work. It makes me stronger.

Like a good work out, this waiting is.

And it is a beautiful thing when you realize you can face your deepest fear….

And live.

In the depth of longing, there is strength and living.

I am not alone. (Jesus hold me up in this water if I get too weak!)

And I am getting stronger.

All this beauty in waiting.

All this because of Bella.

 

This too shall pass.

 

God’s gift to me; in her.

 

• Kaylee (and husband, Dan) have one daughter, Miss Bella, who lives in a world of FPIES,EoEDelay in Gastric Emptying.  Kaylee works full-time at Start Garden and fine-tunes plans to take over the world while driving to doctors’ appointments.

Grief; it’s a must.

I feel like my heart is left in the past and just can’t catch up to the present.

This is what I said at a counseling appointment.

My counselor then drew this:

Grief Chart

To walk you through it, she pointed out that in order to go through life, To get to healing. To get to the other side of a situation.

We swim.

We swim from where we are to where we want to be.

But along the way.

There’s a shark.

It keeps attacking us, biting at us, eating us up (devouring us!).

We try so hard to swim across but it is absolutely impossible to get to the other side of something with this threat.

We need to simply take the bridge.

The bridge is Jesus (HOKEY, I know. I thought the same thing.)

But she was a really good drawer and her pretty little picture helped it “click” for me.

She explained that humans will do anything to keep from grieving.  There’s no real known reason why, but grief is the LAST thing we want to do.  We will bury our pain in any and everything: Busyness, routine, structure, too much fun, substance abuse, self-loathing, shopping, coffee, chocolate, success, awards. Name it. You know what it is.

We would rather do “this” than face the pain.

Grief. There are two specific times when I know grief MUST happen.

ONE. It needs to happen when you’ve been wronged. You need to grieve that you were not treated the way God designed you to be treated. You grieve the loss of innocence, the loss of vulnerability. You grieve the fact that you never wanted to feel this way, never wanted to know what “this” pain felt like.

TWO. It needs to happen when seasons change. I once heard a teaching on grief. The pastor noted that with change there is loss. This loss needs to be grieved. You cannot enter fully into the next season of life without fully dealing with former season. You need to get all of you (and I mean ALL of you) together, wholly and fully (as best your able).  If you need to go back to “that moment” or “those words” or “when this happened” — Do it. Go back there to that space and time. Be there. Let all of you come together before you move forward. Grieve the time lost as you ran from  the pain. Grieve the ways life is different.  You get married, it’s change. You lose freedom in ways, you have to give of yourself in ways you didn’t anticipate, you yourself need to change. Grieve this. Life isn’t the same. Say it aloud. It’s okay. It’s the truth. You have a baby.  The baby is up a lot and you’re losing sleep. You don’t have the freedom and spontaneity you once had. It’s okay. Name it. Grieve it. You’re not in the relationship anymore (maybe that’s even  good thing it came to an end) but you’ve lost the plans you had, you’ve lost what you had. Even if for the better, it’s still change and you’ve lost something. So go ahead and grieve it.

How do we grieve?

There’s no one set way to grieve.

One quick way is to stop. JUST STOP. And be still. You meditate on this:

Be still and know that I am God.

Be still and know that “I am.”

Be still and know that.

Be still and know.

Be still.

And then go there.

Go to the innermost parts of your heart.

Start speaking out loud. Your story. The way you feel (or felt) about it. Give specific examples.

I once had a friend who was trying to grieve a relationship that wasn’t the relationship she had wanted it to be.

She literally sat on her bed and breathed in. and breathed out. FOR HOURS.

She breathed in and then she would exhale the name of the person out.

This was her form of grieving; of letting go.

You may need a good hike.

You may need to cry, Really hard.

You may to picture yourself at the foot of the cross. Or maybe picture yourself in a meadow, wind blowing, Jesus sitting by your side. You share. He listens. You both sit in silence because that’s ok. You both like the silence right now.

And. Remember this:

Grief is like waves.

It can roll in and hit you out of nowhere.

Some days can be steady and calm.

Other days will be filled with enormous waves, a strong current.

Moments where you may think you’re going to drown.

And.

Some days the waves may be even invited – soothing, healing memories.

I’ve grieved break-ups.

I’ve grieved OCD & me.

I’ve grieved the lofty idealistic view of marriage vs. reality.

I’ve grieved things…

But I have specifically grieved a lot since becoming a mom.

Bella, honey, if you ever read this; don’t you for one second feel bad. Not one second, you hear! You are everything God wanted you to be. You are my child and I love you dearly. I love you for all that you are and all you were designed to be.

I wasn’t expecting Bella.

I wasn’t anticipating GI issues.

I thought we’d cuddle a lot. (We did not!)

I thought I’d be ever patient. (I am not!)

Bella is strong-willed (in the most beautiful of ways), determined, independent and persistent.

I love this about her.

And though I anticipated different these are not the things that I grieve.

I grieve that I spend so much time driving to doctor appointments instead of fun play dates.

I grieve when I don’t get to spoil her at Halloween & Valentine’s Day like I thought I would.

I grieve when we put her down for a nap to make Christmas cookies so as to keep her away from those “trace” amounts of dangerous foods.

I grieve when I see other kids chewing and enjoying snack time.

Bella and I have managed. And quite well. We figure out our ways. We make holidays special with non-edible “treats” and we find other special ways to bonds with coloring and stickers (in lieu of cooking baking). We manage just fine – and at times, I secretly like our special ways of celebrating Bella differently than I had anticipated.

But it’s an ongoing grief. The moments that make me want to burst into tears can come at the most of random moments – when I see everyone eating their Thanksgiving meal. When Bella calls her blueberries in her bowl “cheerios” because she’s noticed she’s different and wants to be like her friends.

I’ve learned that some things in life are just that – ongoing. And they require me to grieve continuously so as to take the next best step forward, wholly and fully.

So, I’ve learned to take deep breaths.

I can sometimes grieve these things in a simple moment of giving myself permission to do so – I name it. I call it out loud. And then move on.

And I tell myself that I can cry and grieve as often an as much as needed before my Father.

(And I’ll admit, I probably need a good week before his feet – I’m due for this!)

And.

Like I said, an ongoing basis, I give that whole “this is different than I thought” a BIG ‘OLE HUG.

“Different than I thought” and “My expectations” meet.

They took a look at each other.

And then they embrace.

And we all move forward together.

Because.

I need to grieve.

In order to be the best me each moment of every day.

 

I need to grieve.

In order to release the pain and sit in the present with hope, a stilled and content heart.

Amen.

kayleeKaylee (and husband, Dan) have one daughter, Miss Bella, who lives in a world of FPIES,EoEDelay in Gastric Emptying.  Kaylee works full-time at Start Garden and fine-tunes plans to take over the world while driving to doctors’ appointments.

home

from Kaylee Page this morning for you, mammas…

blessings to you and yours today

To you, mommas who face foreign lands daily:

Details aside, it’s been a long week.

And so….My mom (bless her heart!), came up to spend the weekend with me as my husband travels to Israel for his MBA study abroad. Her car was parked behind mine so when needing to run an errand I hopped in her car and heard:

Hold on… to me as we go

As we roll down this unfamiliar road

And although this wave is stringing us along

Just know you’re not alone…Cause I’m going to make this place your home

Settle down, it’ll all be clear

Don’t pay no mind to the demons, They fill you with fear

The trouble it might drag you down

If you get lost, you can always be found

Just know you’re not alone….Cause I’m going to make this place your home

I wept. The entire way to the store. (Granted, this is only 2 miles).  But still. I wept.

I’m going to make this place your home. For several years now I have had this deep longing for home, for even a glimpse or sense of home.

Foreign land. That’s where I hang out these days (these years!). In a very foreign land. It’s not all due to being a mom of a daughter with special dietary needs.  Some of it does. Not all though. Life as an adult continuously changes — I grew up in the same home from age 2-18. In the past 10 years I’ve lived in 10 different homes, gotten married, had a baby, changed jobs, my husband changed jobs (he also spent 18 months getting his MBA – which was change to our routine) and we’ve found a new church. Then a miscarriage. Then progesterone to try to get pregnant. Then no baby. And the day to day of caring for Bella and the special ways she needs to eat.

As a kid, home was all around me. Things didn’t change much back then. But things change all the time these days!

And it’s hard for me to find home. IT ALL FEELS SO FOREIGN.

I feel like time is passing but I’m not anywhere to be found – at least not fully found. I’m ok. It’s just that I’m just blowing around in the wind.  And as I blow around it’s all dusty, dry and unclear.  I don’t know the upside from the downside, no idea where the ground is to place my feet, no idea how to look up, no idea how long I’ve been blowing around and no idea when this wind blowing me will cease.

I’ve wished and prayed the fog would lift, that I could just make sense of it all and move on into the next season – IMMA LEAVE THIS HARD SEASON BEHIND.

But…I keep waiting for the next season.  I want the next season, because this season doesn’t make sense. This season has me confused. OYE! THIS SEASON ISN’T PART OF MY PLAN…

So I want to be somewhere where it does make sense and I get to write the story.

Please & Thanks!

As I wept… in the quiet of my heart, God assured and reassured me that this place I find myself…. It, too, can be home.  So of course, I wept some more. Grief went all up on me and got itself some hope.

And through wet cheeks I (for some reason, because I am really bad at recalling Biblical folks who’ve trenched the roads and navigated the journey before us) thought of other women (and an animal?) who have faced the challenge of venturing and living in a foreign land:

How not to find home: Sarah (Lot’s wife)… she so badly wanted to feel home that she turned around (poor thing turned to salt!)  Lesson noted, God. He calls us to stop looking back, stop looking for what it is we want, but look to where He has lead and where he is leading. He calls us to his presence where home resides.  We seek him, lest we turn to a PILE. OF. SALT.

How to find home:  Ruth (eventual wife of Boaz)…. shows ultimate family loyalty which results in her leaving home.  Lands her in a totally foreign place. Eventually she winds up wed to Boaz, but instead of running from where she is supposed to be, she endures it. It was probably difficult, confusing, and most-certainly uncertain.  But she sticks it out. She even proactively does what she can, then waits on God for the rest. She found home in an unfamiliar land.

How home finds us:  The sheep…. We’re told the Shepherd leaves 99 to find 1. We’re not told why the sheep “wanders” off.  I think the church usually plays it up like the sheep ran away like a bandit, in complete defiance of the Shepherd. But what if the sheep just got lost – plain lost. And we always imagine the sheep hanging over a cliff with the Shepherd quickly saving it’s life with a candycane shaped staff. While that’s true in some journeys, I wonder if sometimes the Shepherd is okay with a sheep being away from the herd for a bit – maybe it’s necessary? I don’t know.  WHO KNOWS! Maybe there are countless reasons and maybe those reasons don’t even all make sense to us as the sheep. All we know is that if a sheep gets lost, it will be found… and it’s found in the presence of the Shepherd, not the location of the sheep.

Home. It’s where our heart is. Home isn’t found in routine, certainty, and familiarity (though we try really hard to make this home).  Home is found in the determination to stick it out and in the believing in the unbelievable, and trusting that the unanswerable will be made clear (or survivable) and that if nothing changes the way we want it to, that our God is for us and with us. With us on the journey leaving home behind (like Sarah), with us as we work our foreign fields of life (like Ruth) and in those moments where we are lost (or maybe it’s just we can’t tell anyone where we are).  

We can be home.

Home can be in the fog. 

Home can be in the uncertain. 

To those of you feeling lost and a bit blurry —- Welcome home!

Proverbs 31:25

Today’s post comes from sweet Kaylee Page.  Kaylee (and husband, Dan) have one daughter, Miss Bella, who lives in a world of FPIES,EoEDelay 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.

Grace and Peace

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.

FATHER, IF YOU ARE WILLING, PLEASE TAKE THIS CUP OF SUFFERING AWAY FROM ME. YET I WANT YOUR WILL TO BE DONE, NOT MINE.  Luke 22:42

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?)

*Sigh*

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).

HE TOOK ME HOME WITH HIM FOR A FESTIVE MEAL, BUT HIS EYES FEASTED ON ME!  Song of Solomon 2:4 MSG

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.

LOOK, I AM DOING A NEW THING.  Isaiah 49:10 CEB

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 mourninganymore.

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, steadyyour mind and soothe the stormy waters.

Yes, may his face fully shine upon you today.

Grace + Peace.

Today is a BIG day.

HUGE day.

A couple months ago, Dayspring’s (in)courage website put out the call to women who were up for leading an online community.  There were lists of ideas… community for empty nesters, moms of teens, single women… but none for moms of special-needs kids.  I sat there staring at the screen and wondering what in the world kind of sign that was… and then I read the words “is social media one of your love languages?” Fine.  Alright.  I’m in.  But I’m not doing it alone.  So I called Kaylee, who I haven’t seen in person since we were both single and singing at Mars Hill. Now we’re married and each have a child with a fat medical file.  Kaylee said yes, and here we are.

The complete list of communities HERE.  There are online Bible studies, blogfrog groups, facebook groups, high commitment and low committment groups.  All kinds of groups.  It’s a way for busy gals to plug in, meet some new women, and share their stories. Maybe you need that right now.  Maybe you know someone who needs this right now.  The first session (for those in a time-sensitive group like a reading study) goes through December 2.  After December 2, you can continue or move on.  No big.

Kaylee and I are HERE.  We named our group (in)Able or (in)Ablers… because our lives often involve the opposite.  We want to enable moms… to build them up… to give them (and us) a safe place to talk. The Facebook group is HERE.  Send folks if you think it would be a blessing to them.

You’ve always been so supportive of our journey with Rylie.  I thought it was appropriate to celebrate this step with you, and to ask for prayers as Kaylee and I lead (?) this group for women who so desperately need to be near other women who understand what it is to live in the world of special-needs.  We’re excited and scared!

But, we’re ready.  Bring it.