Seventeen days.

Today is August 17th, 2018  – and that’s how long I can go back to in recalling and chronicling the recent events of our and Sam’s lives.  Seventeen days.

Sadly, I can’t reliably remember any further than that for the last week of Bub’s life.

The entire purpose of this post is simply to just remember and record – because I can’t accept that I might forget some details and situations of the most intense season of my life.

I simply can’t accept the notion that Sam is presently now a memory for us left on earth.

I’m emptying out my heart, my mind – but of course this is through my perspective.  You’d definitely get a different version of events, discover varying emotions and thoughts, depending on which family member would be authoring their own recent memories and experiences.

But this recalling of events is simply from a mother’s eyes and heart.

Looking back – you know,  I do remember bits and pieces of Sam being in ICU around the first part of July.  Mainly I recall early that first morning of him crying over the thoughts that he possibly wasn’t going to make it out of the hospital.  Uncertainty, sadness, anxiety, and then add on top of that extreme sickness from being septic – we just rarely ever witnessed Sam crack under such strain.

But my Lord – what a tremendous stack of burdens to process and bear for an 18 year old boy.

It was heart breaking to watch his face crumple and cry in the hospital room during those first 24 hours or so.  However, I will admit that the pain and stress of the entire situation brought a certain closeness and sweetness not only within our family, but with the Lord as well.

That’s the peculiar thing about trials and troubles, I’ve found throughout the years.  It’s the fruit that comes out of them.  Though it’s not often evident at what’s being produced and formed at the time – because the heartache and worry and sheer stress of it all can loom so large in the moments – there really is a purpose in it all.  I can look back at those painful hours and conversations with Sam and now be glad and even grateful for them.  A little bit of a twisted perspective, I admit. Today, I’m so glad that we had the opportunity to discuss end of life issues (the situation forced us to, actually).  CPR, ventilators, Jesus, heaven, grace, family, love…  Grateful because I can see how Christ provided the opportunity for us to say some preliminary goodbyes with each other and gave us the courage to face the realness and gravity of what FA was bringing.

Even though the loss of him and the reality of his passing is still too raw to completely process and accept –  we can all see the mercies of God being played out in every event and what a tremendous consolation that is.

And those mercies have become more clear and evident as time has passed.

Especially as I typed and recounted back the days as far as my mind would take me, it’s like the fog of confusion and the sheer mental chaos has lifted or parted a little more –  providing more clarity to my heart and thoughts.

I typed out these recent memories and events in the context of me talking to him – simply because I ache for conversation with Sam.  I yearn and deeply long for some type of tangible interaction. Even if it is just a ‘one way’ conversation with me doing all the talking.

I can’t describe it any other way, other than to say that the five senses (touch, hearing, smell, taste, vision) are just flat cruel to live with on a daily basis when the loss of a loved one happens.

Unfulfilled and unable to be satisfied, the senses are so cruel.

August 16^th 9:30 pm Thursday

As I laid my head in Wade’s lap tonight, sobbing over the loss of you in our lives, I was overcome with the deep deep longing to just TOUCH YOU.  Waiting for the reprieve that medicated sleep will bring tonight, I thought this: I am desperate to keep recent moments with you from turning into distant memories; yet I know that is just the natural order and flow of how life happens.

I’m terrified of forgetting.  Terrified.

Sam, my senses ache to experience you again and not to forget.  To hear your wheelchair clicks as you turn corners or stop to watch TV; to smell your hair and your cologne on your chest; to feel your forearms on my shoulders as I lift or transfer you; to tousle that curly hair with my fingers; to watch you hold your head back and suck in air as you belly laugh, watching Dwight or Michael Scott be complete idiots on The Office, with your smile open and consuming all the real estate on your face, and actually throwing yourself forward in your chair because you are laughing so hard.  Seeing that trademark smile that so many people have recently told me that would light up any room.  Your black eyes would be slits because you would grin so big when something really made you happy or laugh.

Your Minnie loved to purposely bring out that laugh and grin in you.  Explains why she always pushed the envelope and cussed a little around you. It was that smile and laugh of yours that rewarded her for being ornery and tiptoeing over the line.

I need our living room lit with that smile tonight, Sam.

It’s so dark without you, son.

13 days.  13 days.

Incredible.  Unbelievable. The finality of your loss is too much for me to process, too much to accept, too much to know exactly how to navigate through it. It just feels like thick mud around my legs, trying to figure out how to do all the firsts: first night without you in the house; first family meal without you; first trip to the cemetery……..

So, because I know and realize two huge weaknesses inside me – forgetfulness and fearfulness – I’m going to use a strength instead to keep those two at bay.  I’m going to muddle through the hard task of remembering and chronicling you, of remembering the moments so that when the passage of time inevitably threatens to make them distant memories, I can find some comfort to reread my thoughts and bring you back to my heart and mind, just as close as you ever were.

August 11^th 6:30 pm Saturday

Your dad and I arrive at the Lamar cemetery to do the hard task of coming and seeing your final resting place for the first time.  The crickets and locusts greet us, as if they’ve been commissioned to create the most serene and welcoming atmosphere for this required, heartbreaking, initial visit.  A chorus of evening comfort.

Throughout our time there that evening, my heart was lightened a bit by hearing a bird sing. It was a beautiful, peaceful evening with the landscape and hills so very green from all the recent rain. But, as my eyes fell upon the mound of dirt, covered with colorful flowers and ribbon, I found it surreal that your body was under it all.

“But it’s not him”, I told myself over and over, as did your dad to himself, too.  It’s just the earthly shell that housed your spirit and soul, nothing more.  I refuse to attach ‘life’ to the grave as if you’re actually there – though I do feel some sort of connection to that patch of ground I can’t explain, but only because it’s a form of you.

But you know – maybe there’s some wisdom in that, that really does make sense.  I still feel an obligation and deep commitment to care for your earthly ‘shell’, to tend to your grave, but it is Christ who is and will eternally be tending to your soul and to you.

I’d say that is a pretty brilliant arrangement and I’ll gladly accept those terms of Who will be caring for you.

To quote a line from some movie, “Good trade.”  Jesus will care for you eternally and wipe your tears, restore your broken body; your family will tend to your grave and memory here, for just a spell.  I can accept that.

As your dad and I wept bitterly, my eyes caught sight of the tiniest ants I’ve ever seen, scurrying around to the side of the dirt.  They were so minute that they were almost clear and invisible.  My thoughts briefly turned to the awe of how gloriously life is knitted together – the DNA of the ants, their skeletons, their cells, and mitochondria – how perfectly designed.  And if the Creator could fashion something that tiny, so that they operate smoother and more efficient than any man made machine – how could I doubt the promise that He knows the number of hairs on our heads – your head?? You are perfectly being cared for, restored, fully known, and loved completely.

The ants reminded me of that truth in my moment of grief.

We only had one car honk and wave at us as they drove by the cemetery.  A sweet and even humorous reminder of life in small, rural America…  And one dear friend, overcome with the need to hug us, stopped to shed a few brief tears and give us brief words of encouragement at your graveside.

I took some of your beautiful red roses off your grave, to preserve and hold onto; maybe to put in a small inconspicuous pendant, or maybe fashion them into a tiny pair of red earrings.  To maybe one day give your sisters a gift or some remembrance of you to hold onto.

The time came for us to leave, and it was the longest and loneliest walk to the car for your dad and I.  As I stared at my feet on the gray gravel path, it occurred to me though tears that this is exactly how we will live without you in our lives.

One step at a time.  One step forward.  One step forward.

August 10^th 6:00am Friday

I awake early with your dad, and we say our final goodbyes to Madison and Shannon.  They tell us both how very comforting it was to be around us, so touched at how our family and community received and welcomed them.  I think to myself, “Well,  Sam welcomed her fully into his heart, and so it’s only right that she would be welcomed just as fully into ours ” –  as she was such a big part of who you were. I had found your class ring in a basket the day after you passed, and I thought it only right for her to have it. She was really touched when I gave it to her this morning, I think.

What a gift Madison is, Sam.  Inside and out.  We can’t wait until we get to see her and her mama again.

I read Isaiah chapter 53, written hundreds of years before Christ’s birth.  In it, I’m just overwhelmed at how much the Father loved Jesus and soberly reminded how very difficult Christ’s life on earth was. Not only did the Father have to watch Him be despised, rejected, “someone whom men turn and hide their faces from” – it hit me for the first time that He actually had to orchestrate His Son’s murder and suffering.

All for us.  All for you.

You found favor with people all of your life.

Christ didn’t.

Oh, the Lord’s mercies and plans are just too much to comprehend.  Yet, I am overwhelmed that His LOVE for us is the driving force behind it all.

Carl, Sharon, and Stephanie arrive at 10 am for brunch and a day of sight seeing – but is there really sight seeing to be done in Hughes county???  We had such a good day together and we were so proud to host them in our corner of the world. I gained some insight into your sleeping habits from talking with Stephanie, as she described hers and they were mirror image to yours.  The fact that you never would relent and go to bed early just reinforced me knowing that your brain was never running at the same speed as your body.  She explained that it was better to be pushed to exhaustion so your brain would turn off and sleep would find you vs. laying awake for hours and be bored to tears just laying.  She also told me, “It just hurts sometimes to lay.”  How many ‘a-ha’ moments we’ve had this week.

Hindsight is always 20/20.  I hate that we argued with you over your bedtime so much.

For the very first time since you left, I felt like eating today.

Kathryn walked out of my bathroom tonight on her way to bed holding up a square cotton ball wipe.  “I just want to remember his cologne”, she explained in response to my puzzled look.

August 9^th 6:30 am Thursday

It’s the morning of your funeral.  I have no clue how to make it through this day, even though I’ve thought about it multiple times – and knew it was coming – in the last decade.

None of this seems real.

The heaviness of today already presses down hard in my chest.

10am

We get ready and made it down to Minnie’s to pick up Shannon and Madison.  She’s so beautiful this morning, Sam.  And her mama Shannon– feels like we’ve always just been really, really good friends all our lives.  There’s a certain easiness to them both, and I’m so glad they’re with us during all this.  The mood that morning was surprisingly somewhat light, the sun shining so brightly.  Conversation was good, and we even had a few laughs in the truck on our drive into Ada for your services.

1:00 pm

My hands are shaking and my teeth are chattering, looking at the big double doors that I know we’ll have to walk through to begin your funeral. I’m terrified. Your dad squeezes my hand as we walk in; I’m speechless at the amount of people present. I’m also fearing how to keep my emotions in check and willing my mind and heart to remember that this is a celebration of your life that was well lived – fueled by the endless mercy and grace of Jesus; shown through the hands and prayers of a huge host of people that have come across our paths through the years.

2:45pm

As your services ended, and the endless line of people eventually faded that had come to pay you and us their last respects – only your family was left in the sanctuary with your casket.  I stood at the head of your casket, one hand tightly grasping Derrick’s, my other hand running my fingers through your hair, willing myself to not forget the touch, the texture, the feel of your signature curls.

It was the last time I would get to touch you.

3:30 pm

Town through town, law enforcement had every major highway in two counties shut down, in honor of your passing by to the cemetery.  Your dad, sisters, and I just grinned and shook our heads as we passed by them in the funeral car.  Even in your death, Sam, you had the red carpet rolled out for you.  Just like in life.  The procession line to the cemetery was over 3 miles long. You likely never had a clue that you had this kind of effect on so many people.  But then, maybe that’s a good thing that you were oblivious to the enormity of your influence.  You lived your life in such a way that it wasn’t affected by what people saw or thought.  There wasn’t that pressure to perform or to be someone you really weren’t, only because you realized so many eyes were upon you.  So many of us operate like that today.  There’s some mercy and sweetness to not being that keenly aware, because in turn, it meant that you didn’t feel that social pressure.

I’m glad.  You just lived.

4:30pm

“Get in the car.  Get in the car now, Mrs. Brown or you’ll never be able to leave.  The line will never stop.”

The kind but hurried voice of the funeral director was speaking from experience.  Throngs of people were everywhere at your graveside, and as I tried to gather Kinsey and Kathryn to get them into the funeral car after the service, 10 people seemed to have made eye contact with me, walking towards me with a crumpled face, longing to hug and cry, or whisper some comforting sentiment into my ear.  I lost sight of Wade, but the director found him and escorted him to the black family car.  As we pulled slowly through everyone in the cemetery standing around your grave, my eyes couldn’t be peeled away from the sight of your casket. I felt like a little kid leaving for camp, unable to quit looking at his parents through the window as he was being driven away.  Sobs came uncontrollably, as I soberly realized this was the very last image I’d have of you above ground.

Your sleek black and chrome casket, covered with red roses.  This was it.

“Stupid disease.” That’s all I could say.

I immediately reflected back and perfectly remembered the moment the nurse brought you into my room the morning I got to take you home from the hospital.  The sunlight was filtering in through the big window onto my bed; and there was this perfect little wad of a baby and I was OVERCOME with peace and awe. I was a mother. You were beautiful.  Clad in a little white and blue gown, I undressed you and put you in a ridiculous green striped outfit that was about 4 sizes too big to take you home in.

And now as I cried being driven away in a limousine, desperately wanting one more final glimpse of you, it’s now become the most painful title I’ve ever held:  I was a mother.

It costs a lot to love.

8 states.  That’s how many we counted that represented the folks that came to show us their love and support.

Oh Sam Brown. Did you ever realize how much you were loved?

9:45 pm

Shannon, Madison, Minnie, Kins, Kathryn, your dad and I – are gathered tonight in the living room in our comfortable clothes, curled up on couches, laughing and watching home videos of you; just decompressing after an emotionally exhausting and difficult day.  We watch you at 3 years old be such a little poot at your Christmas play.  We watch you argue with me in the Byng dining room, reluctantly saying your ABC’s only because you’re arguing and only want me to give you the video camera.  As you’re reaching for the camera, you say, “Gimme to it”.  We crack up.  Madison grins big and remarks how much she’s enjoying getting to see this whole other side of you.  You were such a stinker as a toddler.  We’ve all known it, and the videos confirm it tonight.

I can’t go any longer.  I finally retire to bed for my 3-4 hours of sleep that I’ve been growing accustomed to.

August 8^th  7:30 pm Wednesday evening

While your services are tomorrow, there’s two sets of special people flying in tonight at different airports. Your dad, Kathryn, and I head in opposite directions to pick up folks who will be good for our hearts….. who will have a hand in assisting the healing of our hurts while they arrive in your corner of the world to try and heal their own…because of your passing.

Kinsey and I drive into town together and I drop her off at Beyla’s.  I’m struck with gratefulness for her presence.  She’s been so soothing, so patient, so easy to talk to and talk with. We have some candid conversations about future plans, what routines will look like, etc.  She’s really holding up well.

I arrive at the Hampton Inn to be greeted warmly into the arms of Sharon, Stephanie, Carl, and Kyle.  We share a really good meal at Pigskins; but the atmosphere took me back to a rainy and wintry afternoon when you held baby Aaron there one Sunday after church.  I better get used to the familiarity of places to be painful for a while.   I’m in awe that all of them flew in from opposite coasts for your services; it was really good to be able to talk plainly to them; to cry a bit, and to feel so much comfort from their presence and conversation.

I drove home later that night to find your sweet Madison and her mom waiting on the front porch.  Another tearful but healing greeting.  To be able to hug the neck of the one person who held your affections and gave you fuel to get through so many days – it was so good.  We cried of course – but we stayed up til nearly midnight talking, crying, laughing our dim living room. Again, we couldn’t believe that they too, are here in honor of you and support for us.

I can almost ‘see’ the hand of The Lord in nearly every detail of our lives.

August 7^th 10 am Tuesday

The morning begins with a trip into Ada for shopping for funeral clothes and tying up loose ends.   I’m really enjoying the peacefulness in the moments of it just being ‘us’.  The girls and Wade and I are enjoying a sweetness of each other’s company that I really can’t explain.  Just a healing of sorts – a squeezing of hands, an occasional back pat, a random hug or kiss. Kathryn and I help your daddy pick out a very nice tan suit coat; he offers no opinion, as he looks small, lost, and unable to make a decision right now. We just have go through the motions in some moments, but the moment passes, and the day does get better.

Kayli had baby Kooper today; my heart breaks for Malissa and Patty and Bogie.  They are torn between celebrating the arrival of a new grandchild, and mourning the loss of another.

Life is so hard and complicated.

5pm

The four of us arrive together at the funeral home for the family viewing of you.  I look at your teal shirt and think this would’ve been what you would’ve worn for your senior pictures.  I see your silver cross necklace, with Papaw’s wedding ring on it.  You were always so proud to wear it. I cry at the sight of your hands and I call to ask Liz to get your choo-choo train baby blanket from the closet before she comes, to cover them up. Your dad places your beloved silly back scratcher, Kinsey’s OSU cap she got you for Christmas, and some beef jerky in your casket. We grin thinking about the years you always had to have that dern back scratcher.  When you just wanted to be alone with your thoughts, I would watch how you would wield that thing around in the air, like you were engaged in some invisible battle.  I often wondered if you would’ve joined the military or law enforcement had things been different.

I finally get the courage to touch your hair, run my fingers through your curls, finger style each one around your face.

Your Uncle Colt gave me the biggest, strongest hug later as I had to will myself to leave you and that comforting head of hair, and walk away, once again.

We left the funeral home to go home in a downpour and gathered at the house with all the cousins, along with Derrick and Marian, for a loud and busy evening of babies, Chinese food, chicken, fellowship, and laughter.  It was so good to smile and laugh.

We are so exhausted.

August 6^th 10 am Monday

Today is a day for errands and funeral arrangements.  Juanita came over in the morning and she was a breath of fresh air to me.  She helped me for hours to clean the house, dust, pick out the items for your memory tables…….I had rose essential oils diffusing in the kitchen, worship music playing, and we talked and cried and talked more about you and life.  She shared things about losing her mom; we really just needed each other.  For the first time since all this began, I can say that I felt some heaviness leave and honestly say that it was a good morning.

The girls go with us that afternoon, and we go to pick out your casket piece and meet with the funeral home to make service decisions and drop off your clothes to be buried in.

The girls seem to be doing remarkably well.

None of this seems real.

August 5^th 4 pm Sunday

Emily and Liz are waiting patiently on my bed for me to tear away from people and make more decisions about pictures for your slide show.

Tears of exasperation flow down Em’s cheeks as I cannot find time away from the endless flow of people wanting to spend time with us and talk.  I feel awful as I can see the dark circles under her eyes, but yet I know that she perfectly understands the stress of death and all it entails for the living to process and handle it.

My sisters and my mom are showing super-human patience, grace and understanding.

Ricky, Matthew, Sara, PaPaw, Gammy and Poppy – they’ve all been through this and intimately know. I’m thankful for their presence.

I know this has to be hard on our own set of parents to have sit back and watch.  It’s so hard when your kids hurt.

We finish picking out pictures and songs that would fit your life.

I was awakened very early this morning by your dad crying softly in his sleep.  Maybe tonight will be a bit different for us both.

We’ve made it through the second day without you.

August 4^th 7 am Saturday

I bolt out of bed at the sound of Wade yelling from your room.

I cannot make my fingers type the next 30 minutes.

I cannot find Kathryn in the commotion. Wade finds her, as she’s been out at the goat pens by herself.  Your dad calls Kinsey and tells her not to speed coming home.

Mom shows up; the deputy shows up; Marcia shows up and catches me in a hug; Kinsey shows up. Wade and Kayla come.  Kenny comes.  Marian comes.  Patty and Bogie come.  Daddy comes.

I eventually catch sight of the M.E. walking into my home.

This is not happening.  This is not happening.

I never got to tell you goodbye.

I never got to tell you goodbye!!!!!

Dear God, this is not how I thought things would happen.

Mom makes me eventually walk up the pasture with her and take a shower at her apartment.  I step out of the shower only to let my eyes fall on a pink greeting card that was tacked to the bathroom wall: “Trust in the Lord with all your heart and lean not on your own understanding.”  That’s all I see, as the rest of the card is covered up behind a picture frame.  A familiar verse from Proverbs I’ve heard and read all my life.  The scripture now looks like it could’ve been flashing like Vegas lights to get my attention.

I’m losing my mind thinking you needed me and I wasn’t there.

“Trust Me.  Don’t interpret the events as your eyes would have you understand.  All your heart, Lee Anna.  All your heart.  Trust Me with ALL your heart.”

August 3^rd 5:30 pm Friday 

You’re in the kitchen, wondering what’s for dinner as I come home from work.

Kinsey’s leaning over the bar, purse in her hand, ready to walk out the door now that your dad and I are home.

“He woke up low this morning, but he’s actually ran pretty high all day.”  She’s always been good to give a quick run down of your day. Kinda like a nursing report at shift change.  She really does a good job and it’s been a huge weight lifted knowing you’re being taken care of while we work.

Your eyes look a bit droopy and you tell me that we need to check your blood sugar. It’s 55.  Wow.  Your dad gets you some juice, and you get choked a little trying to swallow it all down.  However, we get it poked down you and I begin to finish up dinner that your sister has thankfully already began for me.

I make a huge pan of lasagna, roast some asparagus in the oven (because I know you love it), bake garlic French bread, and I even found some fresh strawberries and dipped them in a bit of sugar for your dessert.

Your dad and Kathryn leave for a bit shortly after, and you and I have dinner alone at the table.

As I’m feeding you, I notice that you are so proud of your new phone.  I see the twinkle in your eyes and notice the slight grin you have, to be the owner of such a nice gadget finally.  We made you wait long enough for it, after all. I knew you’d be able to afford it with your new and long awaited SSI income; and I knew that you’d also take pride in knowing that you would be able to afford it and pay for it yourself.  Finally something you had a degree of control over and didn’t have to depend on us for.  Your first official bill.

There’s a certain amount of satisfaction and contentment that comes from taking responsibility.  I knew you were ready for it.

Welcome to adulthood and debt. It’s grand, ain’t it?

You comment to me how much easier it is for you to now text, as the keys are bigger and so much easier to navigate as compared to your old phone. You tell me that you want me to get you a wrist strap, like I have on my phone, because you’re really afraid of dropping it, even though you picked out a sweet protective case for it.  I take the wrist strap off mine, put it on your phone, then help you put it around your hand, to see what you think.  You grin big and nod your head in agreement.  Through slow garbled speech, you remark, “I really like this.  Thanks mom.”

After another helping of dinner, you take off back to your room with that beloved phone  to finish up some xbox game you have going.

“Thanks for dinner, mom.  It was really good.”

Your dad and Kathryn make it home soon afterwards.  I go ahead and go to bed later, as it’s been a long week.  I love Friday nights.  I lightly doze and wake up around 10:30 pm to a book still open on my chest and the lamp on.  I realize that your dad likely hasn’t given you your nighttime meds, because he’ll usually come ask me if I have before he prepares them – so we don’t accidentally do your meds twice.  You’re not the most reliable at paying attention and speaking up at what we’re doing while you are playing video games.  I honestly think there could be nuclear war outside, and you’d be oblivious to what was happening if you had a game going.

As I’m laying in bed, I play a little argument inside my head.  “I’m too tired to get up.  I should just ask Wade to do it.  No, don’t holler at him.  He’s been working all day and he’s tired.  He takes care of Bub all week.  I wonder if Sam would be ok if we just went one night without giving him medicine?  No, that would be careless and selfish.  I know he needs that medicine to help to relax and to keep spasms away.  Uggghhhh…. Just get up and do it.  It’s already an hour overdue.”

I go to the kitchen and prepare your medicine and decide to just give you a good dose of water and not protein powder tonight, as you’re back on antibiotics this week for another bladder infection. You seem to finally be putting on some weight since we’ve been giving you extra protein now through your tube.  I had decided a week or so ago to cut back to giving it to you every other night, so Kinsey and I could still safely lift and handle your transfers.  Dr. Puff had warned us about putting too much weight on you once we had your tube in place – she was right.  Even though I resent the whole reason for needing the stupid thing, I do feel better though, about your having it in place.  I think that you’re finally getting better nutrition and hydration, even though it’s just being used as a supplemental thing for right now- you’ll be the one to ultimately decide if eating is becoming too taxing or too dangerous.

I find you in your room, facing the TV, still going strong at 11 pm with your Xbox games.  I give you everything through your tube without really disturbing you much, check your blood sugar, but my momma conscience still tells me the chances of you having clean teeth tonight are slim to none.  I bring your toothbrush out to you with some cups of water and a towel.  My duties aren’t done just yet.

You give me an eye roll and sigh, “Mom…..really? Now?”  You’re obviously irritated with me – quite the norm when it comes to brushing your teeth, because it always means that your dad or I have interrupted some important match or saga you have going.

“Sam Brown, open up.  It won’t take long.  We do this every night.  Your teeth are gross.”

More sighing and eye rolling and a general air of you being uncooperative.  Ok, fine.  I just decide that a green mouth swab soaked in mouthwash would be the crowning glory for sanitized teeth tonight after they’re brushed.  Kinda like the cherry on top.  I’ll participate in this little hygiene power struggle and really do your mouth up right.  No nasty germs on your teeth tonight while you sleep.  Not on my watch.

That really got a good eye roll and more fussing at me.

I left you with your dad, the two of you trying to figure out some kind of battery exchange between all of your dern Xbox controllers.

I cannot remember if I kissed you good night or not.  I don’t think I did, because we were a bit miffed at each other.

It deeply pains me to think about that moment and what I probably missed.

Before I leave your room, I tell Wade, “Let me sleep in here tonight on the futon.  I’ll be fine.  You can go to bed and I’ll put him down in a little bit.   I don’t mind to take a turn and stay in here tonight.”

“No”, Wade says, “you go ahead and go back to bed and go to sleep.  I’ll be fine.  He’ll be fine.  I promise.  It’s ok.  I’ll stay up and then come to bed later.”

Whatever.  I’m too tired to argue with either of you any more tonight.

And that was it.  I went to bed.

A completely normal, uneventful night.

But yet, a night completely full of God’s mercy… and wisdom… and plan for us all.

August 2^nd Thursday 4:30pm

Today is they day you’ve been waiting for, for soooooo long.  After work,  I meet you and your daddy outside in the parking lot at the US Cellular store.  You finally got to purchase a brand new iphone.  And you are on cloud 9.  Wade is frazzled, for he doesn’t understand all the ins and outs of switching accounts, downloading apps, new phones, data transfers, passwords, etc……. I notice the quiet grin on your face as you’re in the van, admiring and messing with your new gadget – completely oblivious to the stress that’s on your dad’s brow.  I see the nice case you picked out and bought to protect it; I’m even a bit jealous because you also opted for a pricey screen protector – but yet I also realize that this is a necessity for such an expensive purchase, as you’ve been dropping things sooo much in the past several months.  You even commented last week as you squeezed and extended your fingers, how much weaker they were becoming.  I’ve seen the frustration and an obvious hint of sadness on your face –  it’s especially evident when you drop your Xbox controllers.  Because your weakened grip is becoming a real problem, I purchased a special thick rubber mat for you this week.  We covered and glued it with cheap carpet, put it in front of your TV to protect your gadgets and hopefully lessen your anxiety about breaking your stuff.  You had expressed several times mounting frustration and even anger over your concrete floors – and I guess it was time that we came up with a solution.

Your ‘stuff’ is all that you really have control over.  We get it, though it’s maddening to us at times.

August 1^st Wednesday 7 pm

We’ve given you the green light to ask Madison to join us next summer for a trip to Yellowstone.  You had told us a few weeks earlier that it’s what you wanted to do “in the time you had left”.  You’re supposed to facetime with her tonight and you are so excited.  You’ve given me clearance to come up with a silly poem for her; I hurriedly scribble it out in big letters on several pieces of paper so we can let her see and read it aloud while she’s facetiming with you.  It says:

‘I have a little question, so please answer me true….

There’s a special place out west that I’d like to share with you.

If you’d like to see snow capped mountains, bears, and watch the                                    buffalo roam….

Would you mind coming next summer with me

To Yellowstone??’

When she read it out loud and enthusiastically said yes, you stretched your entire body out in a HUGE grin.  Minnie and I watched your reaction and I felt like crying inside, as I was so happy for you.  This trip to Yellowstone next year will likely be the wind beneath your wings to navigate through your last year of school, and to help you endure through another grueling winter.  You tend to run out of physical and mental gas by Thanksgiving, but I know that her ‘yes’ tonight will be some very important fuel in your tank for the upcoming 10 months.

It is amazing how helpful it is to have something to look forward to.

I set up your phone while you’re talking to her – so you won’t have to hold it –  mom and I exit the room to give you and her some privacy, and to my shock – you facetime for quite a while with her by yourself.  I cannot believe she can understand you talking and your speech – for that long.

It strikes me at the connection she has with you and I’m amazed at her patience.

You got your first social security check deposited into your new checking account today.  Your own money.  Finally.

You’ve had an awesome day and experienced some newly found and long awaited freedom; and you’ve also been given the gift of planning for a trip and some much needed expectation.

July 31^st Tuesday 8:15 am

I awake you before I go to work, so I can give you your antibiotic through your tube.  I am bummed because we found out yesterday you have ANOTHER flipping bladder infection – the offending bacteria being the very same that put you in ICU just a few weeks ago.  I can’t make sense of this, and I refuse to take you to a urologist in my head, like your doc hinted at a few weeks ago.  I know what they’ll want to do or suggest – straight caths maybe because you may be retaining??  Maybe just a daily prophylactic antibiotic?  Are you becoming colonized with something?  Tons of scenarios run through my head.  I’m disturbed down deep that you’re halfway sick again, for this has not ever been the norm.  But, at least we’ve maybe been able to head off and prevent another hospitalization this time.

I hate FA and it’s progression.  You’ve never been as fragile and difficult to manage as you have this month.  My and your dad’s anxiety levels are higher.  Your blood sugars have been ridiculously hard to control since you’ve been out of the hospital.

Will things go back to ‘normal??’  I wish I really could put my finger on what’s going on inside you.  Maybe then, we could try fixing it.

I unfold your tight body this morning and roll you towards me, so I can have access to your tube.  Hopefully you’ll be able to go back to sleep when I’m done.  I give you your medicine and extra water along with it, stretch out your legs and position them how you like them, make sure your phone is plugged in and under your pillow, the head of your bed up a little, your insulin pump out of the way of your hips, and finally try to quietly to leave for work.

“Bye mom.  Love you.’

“I love you too, Sam Brown.  See ya later.”

– – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – –

And that’s it.

That’s as far back as my mind can reliably remember.

What a tremendous last week of life you had: the long awaited first SSI check; a new phone; your first bill; a ‘yes’ to Yellowstone and long video chat with Madison……

And then two days later ……… you got heaven.

“This I recall to my mind, therefore I have hope. It is of the Lord’s mercies that we are not consumed, because His compassions fail not.  They are new every morning: great is thy faithfulness.”  Lamentations 3: 21-23