for when your child doesn’t fit in

While we all have those parenting moments when we notice something a little quirky about our kids – not all of us have the privilege of anxiously wondering how much that quirk will hold them back socially. And then the day comes when it does.  And that cute little quirk becomes a massive elephant in the room of your child’s social life.  Others notice the quirk(s) and begin to act as if… As if your child couldn’t possibly be liked by very many people because she/he is different. As if they are already on the path to Outcast. As if they are not worth the effort.

And it cuts. Deep.
Then, another worry sets in. You’re just waiting for the day to come when other children, maybe even the ones that now call themselves “friend”, will start to tell your child how he or she is different.  And, sure enough, that horrid day arrives.  You overhear another child utter words to describe your child that flitted across your heart, but only in shadowed whispers.
And that heart of yours… it shatters.  Into a million pieces. One for each thought that comes at you about the social road ahead.  And that road is paved with the shards of your heart.
It’s hard work. Raising kids.  It’s hard work, with an emotional cherry on top, raising a child with special needs. Whether those needs are social, physical, emotionally, or some combination, it doesn’t matter.  It’s just hard work. But, like all things that require extra effort, the rewards can be huge.
The rewards can be outrageously great on some days, and barely identifiable on others. Staring deeply into the eyes of the one you call “child” and seeing love reflected back there is an incredible reward. Hearing words of love from this same child? There simply is no greater reward, this side of heaven, for the tantrums and all-nighters you’ve put up with or put in.
But, for those barely identifiable days when you’re sure that your heart has not one single shard left to spare, and in those moments when you rail against the “gift” of being the parent of this child, remember this:
Not_Alone_Creationswap_Richard_Sherrill_Missindeedy
You just look to your right and you’ll see me.  I may need you to put your arm around me and forget about your tattered heart for a moment while you scramble to help me pick up a few shards of my own.  And on the days that I’m feeling strong and seeing the joy in this journey, look to your left.  Let’s promise to link arms and head over there and help that friend up as she struggles under the suffocating weight of learning that her child might never “fit in”, for the very first time.
One thing is certain – we do have to walk this road. It was chosen for us for reasons we may never be able to understand, this side of glory.  But we must always be willing to link arms and remember that we don’t walk it alone.
No.
Never alone.
Sincerely Indeed,
Missy
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.
 
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the body of Christ

In April, I was asked to share our family’s story with a group of folks who have financially and prayerfully supported our schools by giving to the Educational Support Services fund.

While I have often written about our journey at Apple Pie, Anyone?, I had never given a speech before. It was no small joy and even honor to stand before so many who have walked with us for so long. I considered it an opportunity to say ‘Thank you.’

But, as I was writing everything down, another Truth came through loud and clear:

The body of Christ is incomplete without my special-needs child.
The body of Christ is incomplete without my imperfect self.
The body of Christ is incomplete without You.

Hear me, Friends. Whatever your cross, however tall the weeds you are pushing through right now…

The body of Christ is incomplete without you. He does not make mistakes and He is not sorry. He is sovereign and holy and just. Grace and peace to you today.

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.

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.

My child is a screamer.

My child is a screamer.

Please don’t judge me.

HI! Have we met? My name is Elissa, and I’m the Mama to 4 beautiful children. Three have been with me from the beginning, and my youngest was adopted at age 7 from Russia.

It’s not clear exactly what happened to our youngest son before he joined our family, but a special recipe of neglect, trauma and abuse has left our nine year old functioning at the developmental level of a four year old, both cognitively and socially. He doesn’t do crowds, he doesn’t do stores, and he doesn’t like it when life deviates from his picture schedule.

As his adoptive mother I’m new to this whole world of special needs parenting. It took me longer than I’d like to admit to figure out that my new son’s temper tantrums were fear based, not orneriness. I’m still sort of trying to figure out what will send my son into panic mode. It’d be so much nicer if my son would come to me 10 minutes before he had a meltdown to tell me “Mother, I’m simply over stimulated by the options at the grocery store today. If you would like to avoid having me throw bananas at you, you’d be wise to take me home soon.”

Yeah, that doesn’t happen.

I’m the one with a screaming kid in the checkout line. Fortunately my little guy is the size of a six year old so I get a slight measure of grace from curious onlookers. But mostly I can feel their stink eyes burning into the back of my head. Their judgmental thoughts echoing in my psyche,

That boy is too big to be riding around in a buggy. Not to mention throwing a tantrum.

Can’t she keep that kid quiet?

Just give him your phone and shut him up already. (So he can throw it across the store? I think not.)

I hear these sentiments because I have thought them myself. I have callously assumed the screaming kid on the next row was just being ornery to get a treat. I have also assumed that his Mama was too lazy and self centered to make him get his act together.

Oh sweet Jesus did I really think these things about other women? How could I have been so judgmental? Thank you Jesus for bringing my new baby to me to help me be a better Mama. A less judgmental Mama. A Mama ready to link arms with those other harried Mamas in the checkout line and do our best with what we’re given. 

ElissaElissa Peterson is a slightly off kilter Mama to 4 who likes to pretend she has her act together. She writes about the joys of dancing through life with a very special 9 year old glued to her hip on her blog: Don’t Let Life Pass You By.

 

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. •

a recipe for making happiness (maybe)

jillianfrom (in)Able’s Jillian Swanson
Most of the time, I stamp myself with the “epic fail” label.  And if I were to place bets, I am not the only one.Most of the time, life is a disaster.  My home is a giant mess.  Every nook and cranny covered with the trappings of life itself.
My head is in need of emergency disaster relief.I use the scary mommy voice WAY TOO MUCH.  I rarely play with my kids.  I can’t keep up with my household duties.  My budget is in disarray.  I can’t find the courage to find a new home for my dear cat who sleeps with me at night, but is so obviously stressed and unhappy.  Dinner is always late, and as of late, a complete fiasco as I try to figure out what to feed an allergic child.  I am sleep deprived and not remembering to feed my own body.  I am lucky if I make it into the shower more than twice a week–something I swore I would never do as a mom.
I am barely meeting my children’s needs.
My husband’s needs.  
My own needs.  The lucky me who is blessed enough to stay at home with my babies, fails every day at the job God gave me.  And I am so very aware of my failings as a parent.

Certainly not a recipe for happiness.

But, maybe it is…

My loving, sweet first born AJ, is super observant, sensitive, and reactive to household energy shifts.  And now that he is entering into the fours, and perfecting his terrorist tendencies, he is a regular receiver of my frustrations.  The other day after a particularly hard day, he turns to me, pats my leg in a comforting gesture, and says,
“Mom, you make me happy.”

What?!?!
How is that even possible?

I looked around the room.  Nope, still a mess.  Momma’s in pj’s with yucky hair.  Two of three kids are diaper naked (only in diapers.). Dinner was a leftovers free for all. I had commandeered the TV in an effort to wash away the massive rock of guilt sitting on my shoulders.  I had spent the better part of the day pseudo-yelling at the lovely beasties for any number of infractions.  I could have gladly taken Oscar’s garbage can and taken his place as resident crab on Sesame Street.

And this makes him happy?

A few days after that, I started this blog, after a morning of feeling like I was being bodily dragged to the computer.  And I started thinking about his comment to me.

I talk to him.  When the days are bad, I am honest with him about why, about how momma feels and why.  That it’s not his fault.  In my anger, I almost always keep gentle hands, so that even in the swirl of chaos and raised voices, he feels my gentle touch and still feels loved.

And what I do well, I do really well.
I rock the cuddling thing.
I say “I love you” in some form, constantly.
I am a great tickle monster.
I work hard on praising the good things he does and reminding him how proud I am of him.

And regardless of my panic and frustration with daily failures, his basic needs are met, and then some.  He’s fed, clothed, and in a warm house.  He has an over abundance of toys.  He sees his friends at school and receives the therapy he needs to grow.  He knows his parent love him and sees and hears how hard we work for him.  He loves his brothers and receives their love purely.  We fight for him and that which he deserves.We try to be there for him in his mess.etc…..

He doesn’t see my failures.  He sees and feels my love for him as it pours off of me in my tears for failing him.

And for him, that is enough.

The recipe for happiness.

And I spend every moment now convincing myself that’s enough for me.  Rewiring my mind and opening my eyes open wider to see the minute miracles mixed in the wearying day to day battles, and reminding my heart to accept the teeny, tiny, micro-sized blessings that float in the air around my own mess and take them into my soul.

To quiet my sadness and find the hidden joy.

My sweet, beautiful, crazy smart, broken little boys make me so happy with their little arms and hands holding me.  With their little voices and little hearts loving me.

All this given to me simply because I love them.

For now, it will be enough for me.
That is of course, after I silence the nasty enemy voices in my head… :o)

Care to join me?

with much love,

Jillian

from a mom to her son

mariaA Letter for my Son with ASD

written by Maria Dodson, (in)Able mom

April 5, 2013

Dear Sweet Boy,

Right now you are only 6.  You just started at a new school a few months ago and it has really been a challenge for you.  You are often very anxious about going to school in the morning. You say that you can’t read or write and that you have a hard time listening.  And that frustrates you .

Sweetheart, you are right.  You are behind your peer in the language arts right now.  In fact, your delayed language skills often prevent you from asking for the help you need or accurately communicating why you are frustrated. And it breaks my heart to see you struggle in this way.  Communication is a basic human desire.

But maybe I can explain why your Mama is making you go through this.

Son, because of the way your brain works these things are extra hard for you.  It is my great hope (and the advice of professionals) that if we work REALLY hard right now, things will be easier for you when you get older.  I make you go to school, where you are asked to work very hard all day long, so that someday you will be able to tell people your story in a way that will make a difference for the kids that will come after you that struggle in the same way.

And I want to give your teachers and schoolmates a chance to learn that you are different from them, but not less.

I know you will not understand this letter right now, but it’s good for your Mama to write it out.  It reminds her, too, of why we do what we do.

You are a great treasure, my sweet boy.

Love,

Your Mom

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.