late night prayers

Some times I don't blog because I don't have anything specific to say.

But more often it is because I have too much to say.

And it all swirls around in my crazy head all day long.

I literally "write" in my head all through the day.

It's how I think.

But it takes TIME to stop and sit and gather all the thoughts like little chicks back to the nest and tie it all together so that it gets communicated for the hopeful use of others.

Anyway, that's the case these days.

I have so much I want to write about,

and so many half written blog posts that I can't seem to finish.

It's not just the time. I can find time.

It's also energy and focus that needs to come at the same moment as time is available.

This is more rare.

I last blogged about the Ronald McDonald House event we spoke at.

It went wonderfully and happened to be the day after my birthday, which made for a very special birthday date.

Tonight, I want to write,

but again I don't have what it takes.

I have the thoughts,

but not the energy.

My heart is heavy for

far too many dear friends weighed down by the heaviness this broken life so often brings.

Sometimes doesn't it just seem like victories are few and defeats are often?

So,instead of watching "Sister Wives,"

a worthwhile endeavor...

I prayed.

Don't be impressed.

I had already watched 2 episodes in a row with my sister today.

I wasn't sincerely depriving myself.

And sometimes the needs of those around us literally stop us dead in our tracks, don't they?

And we are faced with our literal paralyzation.

As true as any paralyzation,

we want to move,

we will ourselves, we imagine what it would feel like,

to free them,

free ourselves,

from the ravage of sins fire.

The fire that always eats up those in its path.

How I long to just do something.

Anything to stop the pain.

The confusion.

The sleepless nights.

So many hurting tonight.

But I can't.

I'm just a paraplegic.

Completely without the ability to bring about the action I so long to do,spiritually speaking.

When it really comes down to it, I can't change anything.

I am not God.

I can be available to him.

I can listen for his voice.

And obey when I hear it.

And that is powerful

But I am quite small in the scheme of things.

Things like the problem of evil and suffering.

My only real hope is that God is not small,

and He is still on His throne.

He is not paralyzed by the gravity of sin.

How it tears families and lives apart.

How it tears worlds apart.

He knew sin had the power to do all this damage, even if it still surprises me.

When my sharp,cutting, dagger words go flying-

and it's not until I see the blood seeping from the wound of the one I love that I shut up.

Then I am shocked at how ugly, how damaging sin is.

When addictions steal away the hope for life and life becomes only that thing,

and it was only meant to be a good time,

an escape from the harder things of life.

And now you have no life.

When wars are fought and children starve every day and it seems

there just isn't enough hope to go around.

It's then I am stopped in my tracks and I am forced...

to pray.

Because what else can I do?

He knew these days would come.

The moment Eve stopped believing his love was true and rich and enough.

Was the moment the Rescue plan was put into place.

And it continues....

today.

So I just pray.

For those who can't seem to sleep tonight for all the weight of things gone wrong.

From the book, "A Diary of Private prayer" by John Baillie

O Thou who art from everlasting to everlasting, I would turn my thoughts to Thee as the hours of darkness and of sleep begin. O Sun of my soul, I rejoice to know that all night I shall be under the unsleeping eye of One who dwells in eternal light.

To Thy care, O Father, I would now commend my body and my soul. All day Thou hast watched over me and Thy companionship has filled my hear with peace. Let me not go through any part of this night unaccompanied by Thee.

Give me sound and refreshing sleep:

Give me safety from all perils:

Give me in my sleep freedom from restless dreams:

Give me control of my thoughts, if I should lie awake:

Give me wisdom to remember that the night was made for sleeping, and not for harboring of anxious or fretful or shameful thoughts. Give me grace, if as I lie abed I think at all, to think upon Thee.

My soul shall be satisfied as with marrow and fatness; and my mouth shall praise thee with joyful lips; when I remember thee upon my bed, and meditate on thee in the the night watches.

To thy care also, O Father, I would commend my friends, beseeching Thee to keep them safe in soul and body, and to be present in their hearts to-night as a Spirit of power and of joy and of restfulness. I pray for.... through Jesus Christ our common Lord. Amen.

Sweet Dreams.

ooh,oooh, pick me!!!

So, after waiting all day with a little boy who was feeling so much better and perhaps even trying to devise plans for escape... Oh wait. Was that him or us?

Anyway.

He could be found waiting in the lobby,

looking for Daddy to pull around in our Suburban...

And it's possible that he expressed his feelings over being hospitalized with the face below...

Who knows?

What is sure is this.

With every day that goes by, I am more and more convinced that I have been given the honor of a lifetime.

It is to my utter delight that I have the opportunity to be a mother to these three beautiful boys. I feel uniquely honored with the gift of each child I've been given. They each bring into our family their own personhood and contribution. Each time I have been blessed with a child, I have waited with great anticipation to see what new and remarkable person God is going to bring into my life. I don't have particular preferences to what it all looks like.

I don't care if they grow up to be doctors or plumbers.

I don't particularly care if they are shy or outgoing, aggressive or passive, social or private, athletic or brainy...or none...or all...of the above.

That's not up to me.

I know that the shaping of an eternal soul into their intended selves is far too massive a job for this ant of a woman.

So I leave that up to God.

He's actually quite good at it.

Ok, so he's perfect at it.

Ok, so he never makes a mistake.

Ever.

Yet not everyone would agree.

Some children come "broken."

Not as we would have hoped.

It's true.

But look at him.

Really, look at him.

I would not change a thing about the remarkable creature you see in the picture above.

I'm not just trying to make myself feel better when I say

that being Shepherd Jeremiah Joyner's mom has been the honor of a lifetime.

In the early days of his diagnoses, as his health declined rapidly, I wept with disappointment.

Envy towards the unbroken filled my heart.

And I begged God to change this story.

That was almost two years ago, now.

And it's not that I have grown to enjoy what brokeness for my son means. I don't look forward to illnesses or eagerly anticipate future surgeries.

It's not that.

I still fear, I still long to see him grow and gain strength.

But I feel strongly that God has been teaching me about a beautiful, hidden, secret, kept from most on this earth.

Something many poeple will, sadly, live their whole lives ignorant of.

I'll give you a picture.

Recently I watched a documentary called "My Flesh and Blood" which takes you along for a day in the life of a single-mom from California, who has 13 children, 11 of which are children with special needs which she has chosen to adopt.

Yikes.

Wow.

Yeah, it is.

Amazing.

One scene, in particular, was so poignant.

It was this.

Mom bends down to gently pick up her 19 year old son out of his weelchair. He weighs 40 pounds. He has a terrible disease that is fatal. From birth, it causes the skin inside and outside the body to blister uncontrollably, leaving pussing,oozing sores at all times. He also has cancer. His sister died of the same disease last year.

And she gently bathes him. She does this 4 times a week. It takes 3 hours.

She tenderly carries him to the tub, then cradles his weak body,while she pours fresh water over his angry sores.

She bends over him, hovering like love itself. And she says,

"Imagine being drug behind a car, then taking a bath and having bleach water pored over you."

"This is what it's like for him every time, but we have to keep the infection away."

He peers up under heavy eyelids screaming with pain, his naked body scrunched meekly, while mom loves.

And the gratefulness found there is divine.

She labors.

He accepts.

Knowing she is his gift, given to him to live and be loved.

His need is great.

And her love is greater.

I watched this unfold and felt as thought I had been allowed to sneak backstage, peering at a divine scene.

There I was, naked and bloody and with so much pain,

and nothing I could do about it.

And there He was, naked and bloody,

cause he chose it.

On a cross.

It was the only way to heal me from this disease forever.

This soul-sick brokenness I was born with.

And he left perfection, where all was right, to come bath me in bleach water, then bandage up my brokeness.

And it is messy.

But my King is a humble King, full of compassion and servanthood.

So he didn't just wave the magic wand of Heaven over my life.

He left beauty for despair.

To join me here and carry me, day in and day out. To cry when I cry, catching each of my tears in a bottle, collecting them like the most valuable baseball card that has ever been.

And he holds me and carries me through this life,

and when it's all said and done, he gets nothing.

No purple heart, no reward. He does find pleasure, and it pleases him eternally to be my rescuer. It is his perfect plan.

But what have I really got to offer the King of Heaven that would pay him back or make it all worth his while?

Nothing.

It's this picture that captures it for me.

True vision.

True perspective.

I have never cared for anyone the way this mother cared for her son, day in and day out, without respite.

Honest truth? I know I can't.

I pitch a fit when I don't get to "punch the clock" at 6pm. And I've been doing this for almost 6 years.

I still love sleeping in,

to the point where I debate how terrible it would really be to just tuck a box of Cheerios under my covers and toss them in the direction of the screams.

I like time to myself more than most people I know.

And I simply don't get enough of it.

Can I get an Amen?

All that is to say,

don't get any crazy ideas about me,

dismissing my thoughts to my saintly nature.

(spit)

Puh-leeez.

I just know truth when I see it.

It rings deep in a place inside of me that was made for knowing it and living it.

My soul.

You have one just like it.

And it's these pictures that inspire me.

Everyone needs a little inspiration...or a lot.

We were made for that too.

And inspiration is what I got on March 28, 2009, when a 5 pound little boy made his way into this world, full of life and losing it all at the same time.

An honor, an inspiration, a joy, a gift, and more.

And when I say he's a gift, I don't mean the kind of gifts that we hope others get, cause they are so hard.

Not the "well, more power to ya" kind of gift.

But the kind of gift that I would knock people out of the way,rushing like a single lady trying to catch the bridal bouquet to sign up for.

Mean it.

What an honor that momma with 13 remarkable kiddos has. She gets to live a beautiful picture of God's whole hearted, sacrificial, fanatic love for us.

I want that.

For my life.

How many people? How many people called Christians? Have not even entertained the idea of caring for a child with special needs,on purpose?

It's one thing when they're born broken.

Watcha gonna do?

But choose that?!

I would. Now.

I didn't. Then.

But God graciously took the choice and made it for me.

And now I know.

And I pray I get the chance to do it again.

For me, that means I'll keep asking God to bring my son and daughter from Haiti home to us.

I actually get excited about taking care of my Haitian son, M, who is blind.

It's not because I think it will be easy or that I am even equipped or able to do it.

I'm totally not. Let's just be clear on that.

It is because my God has ventured out of the most "comfortable situation" anyone has ever experienced to care for this broken human.

So I can at least try.

He has promised to go with me.

I simply have seen what joy awaits for those who venture to see the hand of their God in what the world calls impossible, broken, ugly or worse...

unrewarding, a waste of time, not worthy of your efforts and investment.

So too many children wait in the foster care system or an orphanage, or a hospital, and many die alone.

Largely because they are broken and their need is so great.

It's so great that no one wants to even try to step into it.

Or perhaps those broken ones aren't good enough to risk coming in and messing up an orderly, perfect, predictable life with beautiful, healthy children.

What have they got to offer?

Much more than you can see with your temporal eyes.

Trust me.

Or better yet,

Trust Him.

It's all about the glasses

It's been busy around our place. I know your shocked and feeling even just a little disoriented. Especially if your a mom. How can this be? Too busy? Well, just try your best to imagine with me...

I was so glad I caught a picture of this. The boys decided that b/c Haddon was wearing a belt he looked like a "daddy," which ended in Aslan getting my scarf so that he could be a girl and they could be getting married.

Beets

In all of this busyness, an important day is rushing towards us. And I am going to need all the time I can get to prepare my heart well.

On May 3rd, Shepherd is scheduled for his next bronchoscopy. This is the procedure where they take him into the OR and lower a scope through his nose and down his airway to take a looksee. If they think things look optimal for decanulation (taking out his trach), then they will proceed to surgically remove scar tissue in hopes of successful decanulation. They anticipate a 50/50 chance at his success. They tried this back when he was 4 months old and saw nothing to indicate change.

I'm going to be honest. Medically speaking, it's sweet of those very optimistic Doctors to always throw us the best case scenario, but I don't think his chances are nearly so high. Maybe it's the pessimist in me- only I'm really not a pessimist. Anyway. My guess would be a little more like a 20-30% chance of success. Realistically, his chances are probably not all that great for this go round. I'd expect him to be more like 2 or 3 years old before he gets his trach out.

With all that said- there is something very important I have not yet mentioned.

I'm a Christian.

That can mean a lot of different things in our culture.

But for me,among other things, it means this..

I don't simply see things medically or realistically or even through the eyes of chances or odds. Sure I am tempted to- often. It's only natural for any human being to cling to what can be cleanly explained with numbers and percentages and securities.

Since becoming a Christian, I look at the world and see all the same things everyone else sees. I see statistics and probabilities and facts and studies.

And I like them! Heck, I love them!

But I don't just see those. I see a whole lot more.

I like to think of it as putting on glasses.

I've worn glasses since I was about 9 (big, funky, plastic ones way before it was cool, I mean it was really uncool) . Once, when I was in college, I went running in the Mountains of California, where I was working. It was fairly early and for some crazy reason I wasn't wearing my contacts. Part way on the road I came over the hill to see a figure in the distance. Though it was Northern California, my first thought was, "it's a moose!"

Let me justify my insanity by pointing out that I grew up in Alaska. It was purely instinct.

Regardless- I was way off base.

It was a coworker. A human being.

I know it sounds ridiculous to think I could have mistaken my friend for a moose. But without 20/20 vision things can get allllllll out of wack.

Knowing Jesus, among other things, is like putting on your glasses after having walked around without them for a long time. The first time I put on glasses I had no idea all I had been missing. I just figured this was how the world looked to everybody. But now I can hardly do a thing without them because it is completely disorienting.

I have know Jesus personally for about 13 years. I still forget my glasses a lot. But there's no pretending I can see clearly for long without them.

Preparing my heart for Shepherd's procedure will be a lot of putting on of my glasses.

May 3rd, like any other day in any other town for any other person, is God's day. It's his to do with what He chooses.

I don't mean that in a distant, "whatsoever he shalt will shalt thou be " kinda way.

I just know Him.

And I feel like Peter when I say, " Where else could I possibly go?!" Where else would I go with my pain, disappointment, confusion, hopes,expectations, question, ignorance?

No one else holds the key.

To my heart.

To Hope.

To joy.

To clear vision.

To trust.

He's my Dad. I love Him.

But I can't touch how much He loves me. I don't even try.

He's my Dad.

And if there was ever one worthy of trust, ever one to dive into, to let hold me, my life, my child, my children, our whole, complete selves- it's Him.

So I'm praying that God would heal Shepherd on May 3rd. That there will miraculously not be the granulation tissue that is currently residing in his airway blocking off his breath.

But I haven't got a clue.

I just know the one who does.

And if He wants to work this another way- there is not. a. single. reason. why I shouldn't trust him completely.

Though I may cry on his shoulder a bit, I have a feeling He's not too surprised by that.

Please pray with us. You're all so precious to our family.

Still a spoiled brat...

Since I know you'd all be upset if I didn't start a post with a pic of this little man.....

Here is Shep taking a brisk, refreshing walk. We try really hard to get him outside since he stays at home so much. If I haven't metioned how much I love wubbanub's before (the paci with a beany baby sewed on to it to hold it in baby's mouth), here's a picture of one. I got this one at the hospital but have ordered more since then online.

They are amazing.

We've been hangin out, trying to stay healthy, which was until this week accomplished. But, alas, the boys did get sick this week for the first time since Shep came home. By the grace of God, it happened to be the week my parents are in town. So instead of total chaos, trying to keep sick brothers away from their baby Shep- my parents took the boys to their house at 7am this morning and they are cozied up enjoying cable and some mimi & papa time. Thank you, Lord, for your sweet provisions. It's things like this that remind me that you are near, you care, and you know what I need.

This coming Winter has the potential to be.... a very big lesson in trusting God. With all the crazy flu stuff going on and Shep being very much at risk, we have prayed and researched as much as possible, trying to figure out how to best protect our family. At the same time, we know that whatever we choose to do or not to do, our children's lives are not in our hands. I know, this should be review right? Didn't you already get that part, Steph? 

Well, turns out I'm a pretty slow learner, actually I have what would appear to be major learning disabilities. Yeah, like Spiritual dyslexia or something. 

At least that's how it seems these days. I feel like God is trying to pound his beautiful, refreshing, freeing truths into my dense skull and I'm like... duuuuh. Just slow. 

I guess it's just one of those seasons where it's gonna take some time.  My hardened heart needs someone very patient, very understanding, very strong, very loving, with unending reserves, unmatchable affections and tenderness, perfect insight, someone who knows me better than I know myself, someone who can change me. 

There is only one person I know like this. And by His mercy, I know Him. If you haven't caught on yet, let me tell you, I am talking about my Saviour. And though I love my Noah, I don't mean him. There is no human being on earth who can truly handle the things that this life sometimes, inevitably, brings our way. Most of all, there is no one who can handle us. I mean the us that falls apart, the us no one sees, or the us that the ones we love the most see in the hard times. 

The us that we try hide from ourself and others. Sometimes we just think of someone worse than ourselves. That approach isn't too hard. There is always someone worse than you right. You don' t have to think long to feel good about yourself and forget the broken parts. There's always Hitler.

Don't worry folks, I'm not going crazy. I'll leave that to Hitler.

I'm just a messed up fool, spoiled brat, who is sooo grateful for a Saviour. A lady who is so glad for my Abba Father, a Daddy, who is not deterred by the many temper tantrums I throw. And there are plenty. Trust me.

It actually reminds me a lot of my dad.

 I was a sassy little thing, growing up. And I never have much cared for not getting my way. It's SOOOO inconvenient and irritating. I swear I could be happy all the time if I could get my way all the time. But no one, including God, seems to agree.

Soooo anyway, I can remember countless times I threw embarrassing, out of control, disrespectful temper tantrums as a child. In those moments I had no regard for the parents who so tenderly and affectionately loved me, only wanting my best. Even if it meant "no." I just lost it. 

But this is not how my dad recounts my childhood.EVER. When asked about what I was like as a child he dives into an exhaustive list of the most charming,precious qualities; the sweetest of attitudes, the beautiful moments. To listen to my dad, you would have thought I was literally an angel. "My sweet Stephanie, my little Natasha, always soo sweet" (he used to call me this when I would wear a fur coat he loved to see me in. I was only 5, but he made me feel like a little russian beauty) He literally almost tears up every time.

My daddy is the most gracious person I know. And somehow I doubt that when my dad goes on and on, it's  just a bad memory. It's not that he doesn't know my weaknesses. He did raise me. It's more like when he thinks about me, his overwhelming love for me is so much greater than all my failings. In light of his true, authentic love for me, there's not a lot of room for recounting the failures. The failures are still real. But his love is even more real and far outshines it all.

I believe the God of the bible to love His people much like this. It verses like these in Hosea 11:1-4 that remind me of the character of the God I serve

The Lord's Love for Israel

11:1 When Israel was a child, I loved him,
and out of Egypt I called my son.
2 The more they were called,
the more they went away;
they kept sacrificing to the Baals
and burning offerings to idols.

3 Yet it was I who taught Ephraim to walk;
I took them up by their arms,
but they did not know that I healed them.
4 I led them with cords of kindness, 
with the bands of love,
and I became to them as one who eases the yoke on their jaws,
and I bent down to them and fed them.

And as one who still often acts like a child, boy am I glad. 

 When I'm not learning these valuable but tough lessons, this is a little bit of what life has held:

Dead cowboys

Fall 

Homemade Whipped Cream- my personal FAVORITE

Chick-fil-A in mommy and daddy's bed

and....

A couple days of restful

VACATION.

Thanks to a very generous family who showers other's with the blessings that God has showered on them, we got to enjoy our first mini vacation since having Shep. 

And the best part...

 it included Shep!

Fishing

Flying homemade kites (well, that makes them sound a little more impressive than needed)

I got them at the Dollar store and the boys got to color them. You know.. homemade like that

NOT homemade like THIS, which awaited us at the Cabin on our vacation. Did I mention how generous this precious family is?

And this kid.....

One thing is for sure

He is

not very

Happy! At all! Just flat out grouchy! Cranky! Miserable! 

But hey, we like him!

I'm thinking Christmas card, what about you?

And as a side note.. you guessed right.. Noah took me to IKEA for my birthday. Yayy!!!!!!! It was a blast!

Also, Shep has officially got his first tooth!!!! Pictures coming soon....

Sun, Rain, and a few of my favorite things

Yes, it has been quite some time since I have spent time writing. Don't get me wrong it's not like I don't have TONS of QUIET time, DOWN TIME if you will. I mean I've got it comin out my ears. I'm practically BORED around here. And in between watching Oprah, eating bon-bons, or sun bathing with a Margarita in hand, it's hard to find time to do a thing like BLOG.

You understand.

SO

Things I love:

Shepherd, OF COURSE, AND his new "Teething Bling." I know, I know it sounds funny. But it's great! They are jewelry that look like cool stone pendants or bracelets but they are really PVC and BPA free plastic, like a teething ring. Well, actually it is a teething ring.

2 things I love- my babies and my jewelry- finally able to peacefully coincide. That's what Seinfeld calls "worlds colliding."

And I like it.

The same place I found his teething bling (I'll be putting up a link on my sidebar today hopefully) I got this AMAZING sling. IN LOVE.

It's perfect for Shep's trach.

As you can see, he's in love, too.

Also LOVE

Big brothers, holding little brothers

Sooooooo Swweeeeeeeett

These boys could not love their Shepiddy Deputy (as we like to call him around our ranch) more.

And I lOVE the Love

happening in this pic

and I love the coral colored pillow to the left, cause I made it and it's the inspiration for my new room decoration project, which has so far included 2 new wall hangings, new pillows, new curtains ( all for less than $20)

That I LOVE

And just try and tell me who doesn't love

The influence of an older brother...

(I swear it's not the tattoo that makes him so wild, though I have to point out that it has been 3 weeks and the tattoo is still going strong. hmmmmm. Maybe it was permanent)

Little boys

wearing underwear hats and

goofy expressions

Cowboys at the park

Mic Jagger lips

Baby boys trying to be like their daddies

Funny 2 Year olds that insist on laying down in the middle of the walking path at the new AMAZING park in our area. I guess he just needed some down time.

Thankfully there weren't any cyclers that came along.

But then again, how would I know?

I was too busy taking his picture to get him out of harms way.

Our precious Shepherd is now 6 MONTHS OLD!

It's so weird though. Noah and I both feel like were in some sort of time warp. It's like the past year just sucked us up into a vacuum. The boys keep growing out of their clothes out of nowhere, friends who just got pregnant a week ago are having their babies. And the boy are wearing the Halloween costumes I JUST made for them... a year ago... and it's time to make new ones.

It's just all a little weird.

But byy the GREAT GRACE of God... we are taking each day.

I still go back and forth between immense gratefulness and temper tantrums. Hopefully I'll grow out of that by at least my menopausal years.

And I'm hopelessly in love with this little boy. Who is still QUITE little. Of course, the camera always adds ten pounds.

He hit a little stagnant phase in his weight gain and everyone was worried, but I think it was just because I started replacing more of his bottle feeds with nursing feeds. BUT the good news is that after 2 weeks, I think we've worked out the kinks and I'm still able to nurse him more. He started gaining again last week and the past two days he has gained 5 ounces! That's a lot for 2 days, which brings him to a grand total of 11 pounds and 15.5 ounces- that's right, almost 12 pounds! As his nurse last night declared, "He's gotten so BIG! He looks like a regular three month old!"

I just love how big he looks in this pic. We were just driving a long when I snapped this shot.

Kidding. He's clearly not buckled in and though I really care for Ms Spears, I try not to emulate her parenting choices when fleeing paparazzi.

And last but OH, NOT LEAST

I LOVE Anniversaries

and my husband of 5 years.

It was 5 years ago on Oct 2 that I stood at the window watching it pour down rain at the hour I was supposed to be getting married. We gathered around and prayed and by the time we were done, so was the rain.

With the rain gone and the air refreshed, we went on to commit the rest of our lives and every fiber of ourselves to each other.

That NO MATTER what comes- illness, dissapointment, delight, or pain. Wether we fail or succeed, I am my beloveds and my beloved is mine.

And it is when you find yourself in those rainy seasons like the one we are in now, filled with circumstances that, at times, seem far from the sun & beauty that eventually came. It is in these times that you see what a gift God really gave you on that day.

He gave me a companion, a best friend, a man that will love me when I don't even closely resemble this kind, gentle, light hearted bride. And even though life isn't all roses and I sometimes feel that the challenges of life have brought out the worst in me, I know there is one man who will still hold me close when I crawl into bed after a long day, often filled with taking my stresses out on him. And it's that kind of love, that kind of beauty that reminds me of the perfect man- Jesus- and after a long but probably difficult and probably wonderful life, I will be able to crawl into his arms and rest, despite all my failings- only then it will be forever.

And that will be the sweetest kind of sweet.

But until that day comes, Thank you Noah for reminding me that even at my worst I am dearly loved and affectionately cared for.

Your just the man for me.

Thank you for sharing yourself, your life, and oh yeah, your genetics, with me. You gave me some pretty cute kids.

Whatever thy grief or trouble be, take every drop in thy cup from the hand of Almighty God. He with whom "the hairs of thy head are all numbered," knoweth every throb of thy brow, each hardly drawn breath, each shoot of pain, each beating of the fevered pulse, each sinking of the aching heart. Receive, then, what trials are to THEE, not in the main only, but one by one, from His all-loving hands; thank His love for each; unite each with the sufferings of thy Redeemer; pray that he will thereby hallow them to thee. Thou wilt not know now what He thereby will work in thee; yet, day by day, shalt thou receive the impress of the ever-blessed Son, and in thee, too, while thou knowest it not, God shall be glorified. "

- E.B. Pusey, Joy and Strength, quoted in Keep A Quiet Heart by Elisabeth Elliot

Mr. Wide eyed is just hanging out and working on recovery. And we're just trying not to count...each....day until we get home. But of course we are not being successful. We are- God willing- going home in 3 1/2 days.  The above quote was helpful to remember, as I think on the MANY moments that God has sovereignly ordained these past months. And now, as the end of the hospital stay draws near, I pray I will continue to receive each moment as it comes.

Only God knows what the future holds for us, for Shepherd. I hope to be more sure, because of these months, that God can be trusted with the unknown. 

Even now, as I face each consecutive night here in the hospital, I long for this part of the journey to be over. I yearn for the comfort of home and the comfort of my boy in my arms while at home. I hope Noah's grad party tomorrow will be the last time I drive home without my son.

Oh, there are so many questions about the future, but I hope that I feel safer there then I once did.  When we get home we will have soooo much adjusting to do. We have a new normal to find for our family. There are new memories to be made, challenges to face, many new relationships, new disciplines, much learning to be done. There are countless doctors appointments to go to, hurdles to overcome, and much change to experience. 

But how I hope that I can accept this change with gratefulness and most of all trust. The bible says that God loves doing good to us so much that he literally burst out into song over it.

 In Zephaniah 3:17 it says

"The Lord your God is with you,

He is mighty to save,

He will take great delight in you,

He will quiet you with His love,

He will rejoice over you with singing."

That's what I hope for from God in this coming season- to be quieted with His love. 

But I will not presume to know what that will look like. Just that it will be good.

As far as medical stuff goes, Shep has been struggling a little with breathing lately. The plan is just to send him home on a little oxygen and wean him off it as he gains strength. 

With that being said, they realized this morning that he really needed another blood transfusion (this will be like his fifth or sixth, I think). The fact that he had been hanging out highly anemic could definetely have contributed to his trouble oxygenating recently. I am sure he's grateful for a bit of a boost. The weekend should be pretty uneventful-for Shepherd.

 My amazing family is working on Noah's grad party. I desperately wanted to celebrate this huge accomplishment  with my honey but I've been a tad distracted.It is a huge act of love for the people who love Noah so beautifully to give so much of their time, money, homes, and talents to making his graduation special. Thank you, guys. 

Speaking of talents, service, and love- a couple ladies from church came by to visit the other day. They came with the purpose of helping us figure out how  they could serve us and how they could help our whole family figure out our new normal- at church.  It was so thoughtful. We are still trying to figure out what will be possible. How do we be with our church family without exposing Shepherd to sickness? How do we go to church without exposing our other 2 kids to the myriad of germs in their classrooms? What about the simple facts of Shepherd's physical needs while at church? I dunno.

But God does and I am excited that he's going to use many others to help us figure it out.

And GREAT news....

Shepherd has taken over 20mL's by mouth, 2 days in a row!!!!!!

They have been using this special bottle with a really slow flow and he's lovin it. So maybe it will be sooner than we thought to get his ng tube out. Oh, I hope so. Putting that thing down his nose is a rare form of torture.... for both of us. 

Well, I am going to attempt a good night's sleep. Attempt being the key word.

Please pray for all the details that have to come together for Shep's homecoming.

We hope to see many of you tomorrow at Noah's grad party.

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So this is how they take Shepherd to procedures and xrays. He and all of his equipment. Isn't that cute? Aslan thought it was so cool he got a TV in his wagon with him.
Cousins. Many of his adoring cousins got to visit this week, now that were out of the PICU. They have all been praying for Shepherd for so long, never actually having met him. We are so blessed.
Momma time
This is our good-bye RMH picture. It was a long time coming, but it arrived. I pray God will show us clearly how to serve this place in the future.
Ride em cowboy. Aslan's taking "luggage" to the car.

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These are all pics of my boys as newborns. It's just fun to compare and remember. Can you guess which is which?

Shepherd

Aslan

Haddon and Aslan

Haddon