Caleb is 18

Mr. Caleb

Our "Peter Pan".  

 In some ways he'll never grow up.  And there's so much good and so much hard mixed in to that statement.  I'll never limit him, but I'll also never lie about who he is and what life is here on a broken earth. 

He is such a gift to us.  He always will be. And the journey of really embracing that is one that stretches us and fills us. 

We are making decisions with his safety and future in mind currently and I pray that each parental decision is one that has his best interest at heart and shows our love. Oh I pray this  - on the daily.  So many decisions and hoops and phone calls. 

We have big love for our buddy.  And so much we are still just learning and trying to figure out.  I know some days he gets the brunt of the unknowns and the frustrations and the distance between expectation and reality.  I'm so thankful he is patient with us. 

Caleb's intuition is the sweetest.  Bringing me my water "You need this mom". Bringing me my blanket when I have a minute to rest on the couch "want your soft blanket mom?". Pulling me super close and holding on tight for long hugs. He has always sensed when my emotions are off, even when I try to pretend everything is fine.  He just knows. 

And he knows he is an adult, by our cultures standards. We strive to give him the dignity of acknowledging that; nurturing his independence, while still protecting him. My eyes get all misty just thinking of this delicate balance now. He is so important. So worthy of love and respect. Made in the image of God and for a purpose! I pray he always feels these truths.

Sometimes I hear people talk of "My kid is so grown, I didn't give them permission for that! I wish they'd stay little forever." 

- I mean, I've even made these comments from time to time! 

But then there's this little part of me that thinks - "But you really don't want them to stay little forever". 

Because this is the rhythm of life. They hit milestones and they become more and more independent. Slowly they need us less and less, and eventually they are on their own.  

Now that I am within a different parental reality, where this isn't the case, my perspective is different.  

Our Caleb boy will need us for all of his life. There's something very affirming and motivating about being needed in this way. To think that God hand picked Dave and I to have this ministry - it's a big deal! But I would be lying if I said there was no grieving in it too.  Every milestone brings a fresh beauty and a fresh grief.  It just does.

We have to decide if we will love fully who he is, or try to put our square peg into a round hole. 

So we let him pick out his special things for his birthday.  -The toy train and the baby Einstein puppet.  Things he truly loves. We will let him shine and not put the weight of the world on him.  He is too precious for that. 

I had the privilege this year of schooling him at home. It's something I've never done because to reach his full potential, I always wanted him surrounded by special ed teachers, therapists, and those who are educated in teaching him. And to be honest? - I didn't think I could do it.  I thought with his processing and learning, it was beyond what I could do. 

So, when I did it, I felt the greatest satisfaction.  To be fair - the most amazing teachers and school personnel have given him an amazing foundation and gave me all the tools to teach him. But what a gift to be able to see him learn and see how quick he was in mental math and reading and proofreading things. It was a sweet time.  Not devoid of frustration, especially in the beginning when I had no clue how to navigate the electronic learning platforms, but we made it to a really comfortable place of learning together! 

There was again a real joy and grief in this.  Seeing how smart and quick he is, when he actually puts his mind to it, is thrilling. 

 It really is.  

And then there is also the reality for me to see "second grade" and "third grade" notated on some of that work. 

He follows his own growth curve and it has always moved forward.  But I am not immune to those "cultural norms" and expectations that want to sneak in and steal some of that joy.  The joy of my 11th grader who is unique and beautiful and will never fit in to a box of normal.  {Also, none of my children will}

So it is in vulnerability and truth, with a heart overflowing with love, that I submit this birthday post.  In a little bit of a different tone and format than my usual birthday letters. 

Processing my oldest turning 18.  What a ride it's been. I asked God - begged him really, for a year. 

We got 18  - and move towards many more. 

Thank you Jesus. 

Caleb turns 17!

Dear Caleb,

Wow buddy - Seventeen!!

I learn things from you regularly.  Despite processing delays and learning delays and all the words the medical community could throw our way - which essentially could mean "less than",  you are "more than".

More than the ordinary human who chases fame or image or the best possessions.

You are simple and honest.   Honestly, unappologetically, you. You are interested in what you are interested in and don't care if anyone looks down on that.  Veggie tales and Little Einstein's for life. ;)

I have tried, as these years seem to go by faster and faster,  to just savor *you*.  Who you are, not who we can make you through therapy, and medical intervention, and medication, and talking you out of being you.  It's such a trap.  And such an easy one to fall into as a mama.  - Being embarrassed by your behavior or apologizing for you, in the absence of your desire to apologize for yourself.  - Which I just noted as a strength of yours.  Yes, this mama has a lot to learn.  While there is value in continuing to nurture and teach you through acceptable social skills and independence, I know God gave us *You* for a reason, and learning to embrace all that he has for us in that plan is still a process we are journeying through.

So, thank you.  For all you are teaching me.  For taking me out of the ordinary to see the treasure inside of something that is falsely wrapped in disappointment.  Thank you for slowing me down and anchoring me in the here and now, while simultaneously lifting me to the eternal and heavenly.

I am not even going to give time to writing here about questions, future, anxiety, adulthood, and change.  Because today you are 17, childlike, happy, and fairly uncomplicated.  We're going to live in the moment here, even as we slowly educate ourselves on the next step in front of us.

Sometimes I just so badly want you to see my logic.  My brain.  My processing.  I repeat myself so often and just can't make you see it.  You do not filter the world the way I do.  You do not see logic.  So we do an awkward little dance of me trying to get into your world and gently pulling you, where I can, into mine as much as is possible.  It's pretty routine now.  The compromise.  The praying.  Sometimes the walking away because this is like a language barrier, and the frustration level is not worth the fight.

I just want to love you.

Oh how I love you.  I have never seen so clearly my purpose and God's intervention and guidance as when I look in your eyes and see your place in my life.

As I reflect on your life, I can think of at least 3 distinctive times that God has used you to give me hope.  Hope that had nearly faded and I was desperate to find again.  While there may have been times that you have seemed to have been the cause of my hopeless feelings, I will never forgot the times that simply the thought of you has given me just the hope I needed. And in the moment I needed it the most.  Because the privilege hidden in the facade of frustration here is that you need me.  More than most mamas are needed, I have the biggest purpose.  When my life feels like it's crashing around me - there's you.

I have to be anchored, and strong, and soft, and nurturing,
and kick the discouragement, or desperation, or disappointment to the curb.  Because there is your smiling face and silly breathless laugh.  God gave you to me - sometimes to give me a desire to continue on.  It's one of his jobs for me. You need me. I need you.

Why me? I have asked it in frustration and I have asked it in complete and utter awe.

Of all of the amazing, qualified, strong, beautiful individuals He created - why were you born early, into my arms?

Because this is his plan, his shaping, his love - pouring through you - all around us. Like light pouring in and through and around our family.  If I don't see it and appreciate it and respond with the greatest of gratitude always, and I surely do NOT, please forgive me buddy.  My mind gets clouded by the world I live in, but in my better moments I see you for the life changing gift you are.

Love always,

Mama

Caleb turns 16

To our dear K,


The memories of 16 years ago are now pretty comfortable.  Like a favorite page in an old hymnal or a song that comes on the radio which you know all the lyrics to.

Our New Years Eve in the hospital.  

The hope and questions.

And your imminent birth.  That we all hoped and prayed would be delayed.....

But your tiny fighting body was one of the sweetest things I've ever seen in my life and somehow I knew we would be ok.

Even through the fog of fear, and a little shock, we reached for hope and acceptance.

Like a slideshow in my mind I see your 1.5 lb body in that plastic enclosure.  I hear the alarms and beeps and ticks.  It's all there, in that space of memory that is still fresh but somehow doesn't seem real.

16 years is for sure a blessing we couldn't have fathomed back then.

Your innocence is a gift - and we all know I don't mean innocence like sweet purity.  The Hutchison stubborn and McCallum temper morphed quite strong in you and we see those things daily.
No doubt there.
But the innocence of childhood that envelops your teenage form.
The things that stay with you much longer than they do with others.
Yes, I can see it as a gift as each year passes.
My little boy.
Maybe there is a Never Land and maybe we will cuddle and sing Veggie Tales for all of my days.
There are much much worse things.


So, my boy.  Sweet 16.
It won't be like pop culture or friends or the neighbor down the road.
It's more of an acknowledgment once again that the giver of life chose to grant our request that snowy night in January of 2003.
As your brother's life faded and you began the roller coaster of fading and rallying - he granted you both life.
Eternal life for Joshua and life with us for you.  We are blessed.  

My heart treasures these things just like Mary in Scripture.

"But Mary treasured up all these things and pondered them in her heart." Lk 2:19

In my 37 years I have seen a few miracles, but this one - YOU - touched me nearer and was so interwoven with my life that I can't help but consider it sacred.

Happy 16 dear boy.  We love you.

Forever treasuring these things in my heart,

Mama

The birthday post I put off

Here I sit, one month and five days past his birthday.

One of the main reasons I continue on with this blog is to preserve memories.  The birthday notes are a big part of that.  His brothers *love* browsing through the years of birthday letters and memories documented.

There were words I mentally composed on his birthday, 1-2-17.  I told myself that I would get over to the computer soon and get them typed.

I  mean, I was busy.  But it was important to me! I would get over there and do it.  Soon.

But after a while?  As the weeks went by - I think I started to become really honest with myself and now I'm going to write some honest words.

It's not just that I have been busy and haven't gotten over to the computer.  This is my slow time with the business and I have more time right now than really any other time of the year.

I haven't been too busy to write K's birthday post.

It's that forming one of my birthday posts well is important to me.
The joy, celebration, and beauty of another year with one of my precious sons is something I want to document.

But what about the uncertainty?  What about all of the things I never saw as being a part of my parenting journey? What if it's hard?  What if the teen years have brought a barrage of thoughts about his future - my future - our future?  - And sometimes it's too much,  like time is going too fast and things I wasn't ready to think about seep in.  Do I still write it? Do I go there?

On Monday, January 2nd, our former micro preemie son K turned 14.  Every year there is a heart deep acknowledgment that we are seeing a miracle.  One more year of life.  

Precious, 

undeserved, 

barely hoped for 

life.  

I have many posts in the archives here of how many times we almost lost him.  He is held firmly in the grip of his creator. 

I am the mother to a 14 year old who has a few descriptors around his name.

Epilepsy.  Once or twice a week he has a seizure.  Usually a mild, 5 minute episode that does not alarm us.  But while we have been told it doesn't hurt him, it clearly is an extremely uncomfortable experience for him.  Watching it always tears a bit at my heart.  Last Friday night he came into our bedroom late at night and he didn't know who we were, where his parents were, or where he was.  He was having a seizure.  He eventually fell back asleep and had no memory of it in the morning.  

Cerebral palsy.  Extreme right side weakness means he walks with a limp, wears cumbersome leg and foot orthotics, can't accomplish many of the tasks we each do day-by-day and take for granted.   We are working with him on brushing his teeth, feeding himself, and dressing himself.  He receives some intense occupational therapy 6-8 times per month that aids in these goals.  And we do this so he can have the accomplishment of as much independence as possible.  But I will always need to  help with these tasks.  Cheering on his effort as he shoves the toothbrush awkwardly into his mouth and moves it around.  I have to get in there and check, and re-brush.  I snap his pants and help him with bath-rooming.  I wash his hair to ensure cleanliness. 

This is my privilege, my God given calling, my joy.  

And some days I want to crawl back under the covers.  Some days I want to do just about anything other than clean up his messes.  I didn't make the mess,  he is past the age where most parents have to do these kinds of tasks for their children, I didn't think this was going to be what mothering looked like, so why day in and day out am I doing this?  Why did God deem this necessary in me and Dave's life?  

He will not be able to be alone.  His eyesight is declining each year.  There are certain things he simply can not feel because of neurological complications.  His processing time for daily things makes it needful for our guidance. 

Autism.   If he does not have his 6 mismatched pair of beads he will become unglued.  If said beads are not in the right order he will come unglued. If his Ipad isn't either 100% charged or plugged in he will come unglued.  If he can not get into the wifi at any given residence or business, he will come unglued.  If he is not ready to get up and go and we say get up and go he will come unglued.  If the color isn't right or the time isn't exact or the sun isn't shining or it's too bright or a picture is not straight on the wall or the rain is coming down he will come unglued.  

And by unglued I mean head banging, arms grabbing, words flinging, teeth biting, tears running down,   melt down.

And I sit and hold him, or I walk away so I can not be harmed, or I wipe tears or I just kneel and I love and my heart squeezes and I smooth his hair and pray that I will be the mama I need to be.  

Because I.am.his.mama.  

I am his only mama.  He knows I love deep.  He knows I would have every bead in all the right orders at his fingertips for ever and always if I could.  And he know I also have to lovingly guide him in real world stuff too - like situations where beads might get lost, or rain might come down,

and somehow we must hold it together.

There are other words by his name and diagnosis and acronyms - and they don't matter.


Five weeks ago my special son, K, turned 14.  I have been given the gift of seeing Jesus in the eyes of this child.  I see Him in the times when he giggles so hard over his veggie tales and his inside jokes, I see him in the strong muscles, perfectly functioning heart and lungs, and overall astounding health of this boy we were never promised a future with.

And I see Him in the deep valleys.  In the moments where I feel so unqualified for the job.  I see Him in the public meltdown when I have to just silently beg for His help to get me through the next moment.   I see Him because he is all I have at those times.  I grasp the hem of his robe and tell him he's got to take this one, because there's not alot I can do by myself in those situations.

Thank you Jesus for our K.  Thank you for the good times and bad.  Thank you that as we start year 15 we have you to help us every step of the way.  Thank you that you give us grace for the moment.  Thank you that we can't see the future  - only what we can handle for what is currently in front of is.  Help us to be good stewards of what you have given us.

{Break Me to Better}

I remember when I was a child I felt strange to be around people who were "different".  Physical limitations didn't really make me uncomfortable, but I wasn't sure how to respond to those who had mental issues.  I had a cousin whom culture would label "different".  He was a child-like young adult.  Mostly he was fun, but every now and then I just felt unsure of myself around him, so it seemed easier to just not deal with those emotions and stay away.

When I became a mom in a rather scary way, 3 months before I was "supposed to",  I was immediately thrust into a life that consisted of medical information overload.

The boys were micro preemies.  They were dangerously early.  The list of things that could go wrong with them was extensive.  I tried to take it all in and adjust expectations of the life I thought I would have.   That's kind of too much to do in a few days time....  But oh my little quivering heart tried to stand tall and do just that.

I knew immature lungs were at the top of the major concerns. So I was trying to wrap my mind around ventilators, trachs, surfactant, and oxygen saturation.  In addition to that we knew that fine motor and gross motor skills were greatly compromised by the boys' muscles missing out on the growth and building that needs to happen in the last 3 months of pregnancy.

Having a child that may have breathing struggles for the rest of his life and possibly never walk or be able to ride a bike were very real possibilities.

And I thought I could probably do this.  Yes.  We would study up on how to help as much as possible, and get used to what that would look like for us.

Yeah - we could do this.

And then K had a brain bleed. And a whole new world of medical professionals and scary possibilities entered our life.

I remember sitting in a neurologists office with my tiny baby.  Just a few months old.  He was cute and cuddly.  Doing surprisingly well for all he had already been through.  While he was on a low flow of oxygen, his lungs were doing incredibly well.  We had started occupational therapy for fine motor skills and Physical therapy for gross motor skills.  While he was responding well to all of this,  neurological questions which no one could answer were creeping in.

Would he recognize us? Would he speak?  Would he be able to form any kind of intellectual skill sets?

To these and so many more questions the resounding answer was "wait and see".

I didn't want to admit to anyone that these were the issues that were like kindling to the  fear fire smoldering deep inside of me.

I would sit in these offices of various brain doctors and observe a lot around me.  I would see other babies like mine. 

"I bet they are hearing a lot of "just wait and see" too.." 

We would exchange little smiles and grasp any solidarity we could find in our tired selves. 

But then I would see some older kids.  Some teens.  Kids in wheel chairs - some drooling or moaning.      There wasn't solidarity because this was something I didn't know at all.  Something that scared me.  A foggy possibility that loomed in my future.  I felt something in the region of the fear fire.  I didn't know how to identify it.  Subtle waves of cultural influence would blow on the embers of that fire - and the flames would sometimes just rage.  But I couldn't really talk about it. 

"How do I do this?" 

"I don't know how to parent like this." 

"I'm lost.  I'm afraid.  I never asked for this."

And then there would be guilt.

I know my God sees our potential.  He sees our hearts.  He sees our biggest fears and hesitations as potential places for sin to settle into.  So he swoops down and rescues us - sometimes by pulling those fears up and making them our reality.  He does this in order to  make them impossible to harbor that which He knows is not for our best.  

Selfishness. 

Judgment.

Fear.

He knew I could do better. 

So he gave me a child with mental, emotional, intellectual, and physical struggles.  

And he called me blessed. 

Everything was different when he was a baby.  Cute and little.  Potential untapped.  "Wait and see".  

While wait and see may still always be a bit of a mantra when it comes to our K, he is now 13.  We see.  Maturity will take place, and changes will continue to happen.  But we see  - him.  

See my eyes? My face?  I believe my feeble heart, held in the hands of my all powerful God, shows there.  I am parenting some of my deepest fears.  And this young man has forced me to be braver than I thought I could be. 

I know my parents desire was to raise me in a counter cultural way.  They knew "culture" was devious, fickle, and a lie.   But it still sneaks in.  It whispers its way in like a tangled web of something unrecognizable -  that soon begins to resemble truth. 

I'm fairly certain I would have succumbed to several of those lies if I were not K's mom.   While I have always considered myself pro-life I'm not sure I valued every.single.life as a beautiful creation formed by a God who makes no mistakes. 

What a privilege.  What a privilege to start each day needy and desperate.  To peak behind the curtain of culture into the realm of eternity and truth.  

This guy shows me.  He teaches me.  He keeps me grounded and humble.  He shows me my limitations and God's power.  

And as he grows and learns more about his own struggles he keeps my heart soft and broken.  - And I am learning that is not all bad.  In fact a soft heart - willing to be shattered for purposes beyond my own agenda has begun to be a hesitant but bold prayer of mine.  

He prefers things very structured and clings to routine.  When things happen that are out of his control - and this happens regularly in a family of 6 - he melts.  It's the only way I can explain it.  I watch my sweet boy just melt away in a puddle in front of me and he goes to a place where he can not be reached.  It literally breaks me.  And that's ok. 

Brokenness has value.  - Just one more thing he's taught me. 

It is during those meltdowns that his realities pour out.  He isn't one to talk a whole lot about how he feels about things during day to day life.  He's getting a lot better about asking for help when he needs it and advocating for himself, but we never quite get a glimpse into his head and heart like we do when he has a melt down.  

"I can't do anything!"

"I am invisible!"

"I'm never going to be okay!"

"I'm afraid."

"I can't do anything for myself!"

And so much more.   So much that has helped me to see, really see, what it is like to be someone who does not have all of the advantages that I have.  

And I need to see that.  

I need to feel that.  

It is so hard to feel that.  And oh do I ever need to.  We all need to.  

I sit and hold him and I cry with him.  I wrap him in a blanket.  I feel helpless next to him.  And I cry out to God on his behalf.  

Among all of his diagnosis {which really mean less and less each year...} is autism. It hasn't changed a whole lot. But it has helped us figure out a few of his responses and form some helpful ways to deal with those responses.  Saturday was national autism awareness day and I gave myself a special "jamicure" in honor of the way our family dynamic has been shaped by autism.  

Puzzle pieces.  

Pieces of my heart.  Pieces that don't exactly fit together in any logical way.  

When I look at my hands I smile.  My boy has my heart.  I'm so glad.  I'm so glad that he has personified some of my fears and shown me an immensely bigger picture.  

Happy 13!

You came into the world with the tiniest cry I had ever heard.  But you cried.  And that was everything. 

You are my tough as nails and my soft place to fall.

You are my multitasking and my brakes.

You are my reality.

You bring the blackest of storm clouds into my life and all the light of the heavens.

You changed my life.

You are my simple and my complex.

You show me everything I never knew I needed.

You push me to my limits and back again.

You are my organized and my chaos.

You confuse me and you astound me.

Today you are a teenager.

Being your mama is everything.

I will never forget your eyes fused shut and your tiny legs, the size of my pinky finger.

You are my miracle.

You show me hard; really, really hard.  And you show me a prefect grace.

You are my valuable and my priceless.

Happy 13 Caleb.  Thank you for forging a path that shows me a better, every day of my life.

~Mama

Caleb Mark in middle school, 6th grade - 2015

I am helped

We know doctors.  I have not known parenting without doctors.  Gobs of them.  Pediatricians, therapists, and medical specialists of all kinds.  We have been incredibly blessed to have many knowledgable and caring doctors as part of our lives.  In simple ways and in life saving ways the influence of medical personnel has greatly impacted our family.

Sometimes there is a feeling of, "this is their job".  They do it well.  They do it with knowledge that is exemplary.  But it's just a job.  Because I was thrown into a world involving so many medical professionals when I became a mom 12 years ago I find myself taking a subconscious inventory upon an initial meeting.

Is it simply their job?  Is it their passion?  Are they calculating how many more patients they can get through their door in the next 5, 6, 7, 8 hours?  How do they view the life in front of them?  What are their perceptions of those they treat?  Are we a name?  A case?  A number? -  Mind you, this all happens in my brain within a matter of seconds.  It isn't necessarily a negative assessment,  simply a habitual analysis.

I'm always wary of switching doctors - cautious when meeting new ones.  Some of it is just the hoops to jump through and All The Things involved with getting into a new doctor.  Some of it is all of the explanations needed to get to a place where someone actually *knowns* K.  Who he is, what he needs, where he's at.  It's a process for sure, and can be intimidating at times.  It's so much more comfortable to just continue with the doctors who have been with him since birth.  They not only know him now, they were a part of the very miracle that his birth was and life is.  No explanation needed.  They knew the wonder and the fear and the crazy tight rope of those early months.  It feels comfortable and comforting to have them on our team.  They know. 

This month we closed a chapter on K's story.  We left the last doctor that has known him since birth.   Or he left us.  Or something. ;)  Actually, he left the hospital where he was practicing pediatric neurology,  which is really the only thing that could have convinced me to switch K's neuro care.  I had to. 

We spent months trying to get records switched,  talking to insurance providers,  and making phone calls to the office of the new neuro we were trying to get him into.  While these things are not my forte,  I can see where God has nurtured much patience in me through them. :)

Last Thursday I drove K to The U of M hospital to {finally} meet the pediatric neurologists who would be taking over his care.  He loves our "solo time" road tripping,  and hanging out,  even if it is to see doctors. ;)

I'm used to alot of waiting,  and was prepared for that.  It doesn't really bother me,  especially in the bigger hospitals.  It's just a thing.  We do what we need to.  But this time we got back about 3 minutes after appointment time.  Subconscious checklist takes note. 

K did his thing. From office staff, to the nurse who took his blood pressure and weight, to the team of doctors - he charmed them all. It's crazy to watch this process.

It goes something like this:

Check name tag, memorize name.

use name multiple times in endearing ways, ie -  "Jenn, what are you going to do? 
 Is it going to hurt me at all? 
 What are you going to do when you get home? 
 I really like music, Jenn.  Do you like Music?" 
 Pauses to give a big enveloping, clinging hug to Jenn.

And then, sometimes,  "Hey Jenn, do you happen to have any iTunes cards or anything like that?"

At which time the One Big Mistake,  that one well-meaning nurse once made,  surfaces once again.  An iTunes gift card was once given during a hospital stay for Mr. K.  Oops. 

Usually somewhere around this point the web of charm has been spun so magnificently that Jenn is doing everything in her power to get an Itunes card sent up to room 203...

And mama stands by and watches, torn between awe and embarrassment.  "Uh...yep, that's my kid."

We spent significant amounts of time with two specific pediatric neurologists last Thursday.  We will be meeting more of the team as time goes by.  Never once did they have their hand on the door while they engaged in a memorized spiel.  -Not that anyone would ever do that or anything, but they didn't. 

As amazed as I was at my own child's fast moving vice of charm, I was even more impressed by the quick and pointed questions the docs asked me and K to make a fair assessment of who he was.

Subconscious checklist marks down that they know their stuff. 

"You keep talking about the Little Einstein's.  Who are they?"

Grabs Ipad, tries to fire up an episode.

"No,  I don't want you to show them to me.  Who are they?"

"ANNIE,  QUINCY,  LEO,  AND  JUNE!"

"Ok.  Are they real"?

"YES!"

"Hmmm. Are they little or big?"

"BIG!"

"Then why are they called *Little* Einstein's?"

"Little, I mean they are little... "

- And so on.

They quickly and methodically,  through a serious of conversational yet very specific questions,  assessed my boy.   They hear his extensive vocabulary and peak into his intelligence,  but also seem to grasp his misdirected reality,  emotional immaturity,  and social awkwardness.  And I think they nailed it. 

And I'm impressed.

To state that it "takes alot to impress me" sounds kind of prideful and perhaps as if I am holding myself to a knowledge of All Things Medical, that I simply do not posses. So hear my heart: I have been to many,  many doctors and have not often seen this quick and knowledgeable method being used while still feeling very heard and treated with the utmost of respect.

Even more significant than myself being treated respectfully by this group of doctors was the fact that K was spoken to,  handled,  and interacted with in a way that oozed respect.  They looked in his eyes when they spoke to him.  No big deal?  Think again. 

I can not tell you the amount of times that doctors have spoken as if he wasn't even there. They ask me things that he could easily answer. -There are definitely situations in which parental input is needed,  and I get that,  but there are times that is just not the case.  And I know the difference.  I would be so bold as to say,  so does he.  

While his hearing is impaired on one side,  he can actually hear very well.

While his vision will never be 20/20,  he sees in a way that impresses anyone who has examined him.

While he has processing delays,  and yes - his brain is damaged - he processes deeply and with an intelligence that still shocks this mama.

So,  when you talk to him like he's a person {gasp} - my Conscious Checklist will take note and my heart will thank you deeply. 

You guys, they spent an hour and a half with us! I have experienced appointments with my K that have taken that long, and longer, but they have almost always involved long wait times.

After thorough conversations and examinations of K, I was getting my stuff around and preparing to leave.  And that's when the primary neurologist pulled a chair up to my chair and looked me in the eye.

What, WHAT? I mean - All The Patients. And the hand on the door knob thing - when's that going to happen? I'm kind of fidgeting in my chair, because I'm not really sure what else needs attention.

He's a bit past middle age, maybe. A fatherly type. This isn't just his job. He's not just passing us through and crossing off our name/number. And he won me over.

I didn't realize the burden I walked in with until he pulled his chair up to mine,  moved a bit to level with me,  maintained eye contact, and said,  "You love him very much.  It's obvious.  He loves you too.  Goodness, you are his world!  But being his mom is hard. It's alot. You do alot."

I almost wept.  Because it is.  It's alot and it's hard and I need help.  And to have someone of his caliber acknowledge this was kind of like a rescue breath to my gasping soul. Thank you Jesus.

"What do you need? How can I help you? How can I come along side of you, as K's mom, and support you in the big thing that you are doing."

Deep cleaning breath.

Can you feel it?

Do you get what this was for me?

Honestly I was surprised at the depth of emotion.


Relief,  hope,  comfort,  affirmation.

I didn't even know. I didn't realize the heavy load of responsibility, and some of the helplessness that had crept in.

But I know I left feeling lighter. Feeling supported and  so much more ready to engage back into this parenting gig.

I didn't weep. I didn't throw myself into their arms.  I didn't say, "can we keep you forever and ever?!" - Like he was some kind of a cute little puppy or something.

I took a minute  - just to myself - to acknowledge the burden and the help being offered. I whispered a prayer of thanks, and I honestly opened my heart and expressed my needs.

We have some new team members now. We are continuing some conversations. We have some plans in place for different scenarios.


I feel helped. I needed help and struggle to ask, but He knows. He just always knows.



"The LORD is my strength and my shield; My heart trusts in Him, and I am helped; Therefore my heart exults, And with my song I shall thank Him." 

{The day you turned 12}

Dear K,

The day you turned 12 was good. It was laid back and 3/4 of it was bonafide jammie day, your favorite. 

You have grown a whole lot this year. Being your mama is a cloak that surrounds my heart. Not darkening or hiding it, but draping around it and reshaping it. It's so much of the woman I have become, and not a bit of the woman I thought I would be.

This year I learned what it was like to look into your pooling hazel eyes and not see you. That's alot of hard right there. But see? That's part of being your mama. It's knowing the soft is you and the hardening is not. It's seeing beyond the clenched fists and frustration and peering into the depths of your soul.

My dear little miracle. I know. I know there are things you can't will your body to do. I know that your familiar is everything to you. I know you cling to the comfort of stability, and I am learning exactly what that stability looks like. When even a thread of your well built and somewhat mysterious world begins to unravel I see you unravel, in the most heartbreaking way.

So I hold on to my stability. And I think you know exactly what that is. I heard you tell your teacher the other day that "mama gets up early in the morning and reads her Bible." - And I didn't even know you knew. Because let's face it, you and anything before 7:30 am? - Complete strangers.

But somehow in the peripheral of your heart you know my stability. You have tremendous depths of intuitive knowledge. 

You grasp your colorful beads and rub them with your fingers until the color wears off and they turn grey. - And you feel stable.

You run your bare feet on your soft rug.

Over and over and over.

Perfect rhythm.
And you are grasping at your stability.

So I cry out to my God. Your Creator, life savor, and sustainer.

Over and over. If my prayers were beads they'd be worn to a grey.

When your eyes go blank and frustration colors your being with rage I just want to reach you. I want to tell you that mama's got this and you will be ok. But I can't reach you in those moments. Sometimes I have to walk away and wipe at my own tear filled eyes. I sink down on the floor and grasp for my stability. I pray. I text your daddy. I take deep breaths. Because really, if not for grace and maturity and filters, wouldn't we all be banging our head on the floor, bathed in our own tears, kicking and yelling out our frustration when our stability slips and our world feels out of control?

You are starting to articulate your feelings with more and more clarity and sometimes it stops me in my tracks and I'm shocked at your self awareness.

Your words, a faint light in the midst of a dark freak out moment, "I'm feeling worried that my feelings won't turn around!"  Again, isn't that everyone? You aren't so different after all.

And once it was, "I'm getting nervous. I don't know what's going to happen!"

And one that actually makes me giggle a bit.... Watching a beloved Charlie brown movie and pausing it right after the loveably depressed main character says, "I feel like I'm losing control of the whole world". - And you said, "See?! That's how I feel!" And your daddy, without missing a beat, said "K, you never had control of the world." ;) Ahh the sweet grace of humor.

I long to have the tools to give to you when I can not reason with you. And I am determined to learn. To learn you and learn me. We'll get this. We will. I know your mind has depths I haven't even come close to entering into.

And I love you.

So much.

I love you when you laugh that awesome high pitched can't-control-yourself laugh.

I love you when you eat us out of house and home (can I get a hallelujah for all those years of tube feedings and failure to thrive?!?!)

I love you when you give me a great big smacking kiss right in the middle of a hushed moment at church.

I love you when you run to me from your classroom at the end of a school day.

I love you when you sing to me.

I love you when you think you are a little baby and can cuddle onto my lap.

And I love you when you yell at me. I love you when you try to hit me and when you kick me. it hurts. It's not like it was when you were small. You are stronger than I ever imagined. And this is new and uncomfortable.

For as uncomfortable and taken off guard as I have felt, I know. I know that your discomfort and panic level is through the roof. It happens when your stability is gone. It happens when you don't feel in control - so you literally lose control.

And I love you.

Today you actually verbalized it for the first time - the wonder. "Do you still love me?"

The melt down was minor in compared to some, but you had your typical remorse. When reality kicked in, after your world began aligning to your expectations again, your eyes found mine - and yours were pools of hazel again instead of the flat coal they had been.

"mom - do you still love me?"

Oh baby.

We are both ragged and torn from learning this. So much is new and we just don't know.

But yes. I love you. I loved you before you were born, fell head over heels for all one pound eight ounces of you when we met and my whole world is too tangled up in you to ever break free of that love.

In addition to that, I am choosing.

I am choosing to love through the pain. Because sometimes? Sometimes I don't know if I am cut out of tough enough stuff to make this journey. Sometimes we just do things that we need to do because God orchestrated it and we trust.

I choose you. I choose this. I choose special needs, doctors, specialists, and every chance I can get to grow closer to Jesus through you.

On the day you turned twelve I was once again won over by everything about you. You are big and strong and learning. You walk, run, quote entire movies, love everyone in the whole wide world, and chase after life very passionately.

I love you always.

Mama

{through the window}

I was scrolling through some photos I took today. From the library. Because doesn't everyone take photos in the library?

The boys were having an outstanding time enjoying the wonder of books and games and fun space that isn't home. So naturally, I just had some play time of my own. A library really does make a creative backdrop for photos. I tried different angles and perspectives. Good stuff.

When I came across this picture of my K, it made me pause.

Because I feel like this alot. Do you get me?

Looking through a window.

I want to know you. I want to know what goes on in your head. So much of *you* is still foreign to me.

I would never assume that by knowing one child I would know all of my children, but there are certain patterns that three of mine follow.....

Not you.

And that's ok.

But just to get more of a glimpse into what makes you tick.
What powers you.
How you learn.
What energizes you.
How to help you be more independent.
How to teach you boundaries, limits, socially acceptable vs.... not. {Not that we are overly hung up on "social correct-ness" - but there are certain behaviors that are innate to some... and some need to be taught}
How you hear love, how you feel love.

Instead of just a window.

Oh, but how thankful I am for that window! Because you have found your voice, and your opinions do fly. The window is good and the window is a 100% God thing.

I'll take the window. A million times over, I'll take seeing you through glass over not seeing you at all.

Sometimes I feel like the window opens a crack, and I just relish the moments.

Like last night when we were laughing together, so hard. My eleven year old was teasing me and neither one of us could cork the fountain of joy spilling over as laughter. We were on the couch together, way past our bedtime, having the tickle fest of the century, and you threw your arms around my neck, looked me in the eye (even this... what an extravagant gift. He looked me in the eye... ), and said, "I love you better than peanut butter".

So, yeah. That's the big time. This kid loves me.

Those times are precious. And I do know how to make you laugh. Even better? You know how to make me laugh. And it still can take me by surprise. That sense of humor that is so real and so you and so hilarious.

 It kind of takes the edge off of the lack of filter you demonstrate when things don't go your way. Like a two year old fit coming from an ever growing adolescent body. *shudder* Not cool. So not cool.

I know the window is my grace from God. I have seen the statistics, I have heard the stories.... I'm humbly aware of the beauty in our window.

The camping thing, and why it's worth it

Our newly created tradition, started only one year ago, is now cemented in McCallum family forevers. 

It's the last day of school camping expedition.

Last year it was a surprise, and that can not be recreated. But the fun and excitement lives on. We went to the same place we did last year. Nothing really stands out about this simple state park nearly an hour and a half north west of here. Nothing spectacular, and yet it's a niche we have carved out and it means something to us now.

So we went. We started out our summer vacation with the camping trip of yes.  The boys have worked hard this school year, and it has been packed busy. Dave and I talked about how much they have done, how spread thin we had become, and how much we desired for these guys of ours to relax and be able to enjoy this time away. We wanted to say "yes" as much as possible.

To be honest, we very likely had to say "no" as much as we mellowed out and threw around that lovely "yes". We are in that training parenting phase, and we couldn't let that guard down. However,

there were two toasted marshmallows, when there may have only been one.

The moon was rising into the sky before little eyes were closed.

Biking, hiking, fishing, kayaking, swimming, and sandcastle making happened multiple times.


It was good. Tiring, and good. Dave and I noted, on more than one occasion, that All Of The Things required a great deal of effort {"Did you get the sunscreen? Go back and get the sunscreen. Life jackets? Oh, we need bug spray. Give me about 20 minutes to load up bikes and kayaks. Ok, we need to patch a tire, nope, need a new tube. There's a Meijer about 15 minutes from here. Oh, did we get worms? Time to unload this and reload that, then reload that and unload this. The anchor is caught around a tree??! Let's unload the bikes. We need to load the canoe. WHERE'S THE BUG SPRAY?!"}

and at times the "effort" itself took longer than the event requiring such preparation.


Worth it. Every single minute. This is our life. The life. Our gift from God that we desire to turn around and become our gift to Him.

At one point we were out on the lake with K, Noe, Kai, and Dave in the Canoe, Jay in his new kayak, and I in Dave's Kayak. It started raining, a soft but steady soaking. I looked around and had to grin. This is it. I was paddling water onto my rain soaked capris and looked around me.

The boy mom life. Defined. Right here.

Really, there's allot of work involved in all of this. Sometimes it feels like we clean up after one meal only to face the beginning stages of the next. We get physically tired, and feel like we need a vacation from our vacation. But this - it's what we do. We've been entrusted with these lives. We only get one shot. We are not investing in high dollar vacations and entertainment. Partially because that's just not us, partially because, let's face it - we can't. 

So, we do this. And we say yes. And we love big.

We make the ice cream

We drown a few worms...

 And that one fish? - The one that just barely squeaks through in crossing the line to "big enough" - it's worth it.

We do the campfire thing over and over...

 And the food. All Of The Food...

-We use any and every teachable moment that we can. We invest our time and energy into these lives. And guess what? These lives give back. Big time.

This mud throwin' dude is a prime example.

Seeing him walking on the beach made me tear up. I don't know what it was. He's been walking independently, sans walker, for several months now - but there was something about watching this big boy navigate the uneven terrain of sand and water....

I don't know, it just got me. 

I was a ways up on the beach, and he repeatedly would find drift wood, shells, and lovely things, such as seaweed, that he would haul up the beach to where I was relaxing.

And every time I watched him make the trek up the beach, walking, My heart would beat,

 "miracle,
 miracle, 
miracle."

So, really - we don't just do it for the boys. There's great effort to make this happen. Planning and toting, lifting and packing, cleaning and cooking, unpacking and refereeing.

But there are some things you just can't see or experience unless you put that effort in. Somethings only become clear when you step away from home and routine and step onto more uneven terrain.