The end goal.

It was the day Ryan passed away.  I was at my inlaws house with the boys and with family all around.  I was in shock.  I was scared.  I was tired.  I was distraught.  I was confused.  The house was warm...really warm, and I was feeling overwhelmed to say the least.

I needed air.

I grabbed my iPad and walked outside.  Sitting at the patio table I opened it up and clicked the Facebook icon.  I sat in the fading sunlight, quietly sobbing as I read the posts written on my wall, and the private messages that poured in from all around the world.  It was when the sky began to darken that my father poked his head out the back door.

"Meri, you really shouldn't be alone right now."

To which I replied:

"I'm not alone, Dad."

I know I've touched on this many times, but the friendships that I have gleaned online, specifically through the diabetes online community have saved me.

I never feel alone.  There is ALWAYS someone there to talk to...night or day.

How do I get through?  It is the love.  Love has changed everything. 

Yesterday was World Diabetes Day.   I packed the car up with my family and headed out to San Francisco to see the Ferry Building light up blue to commemorate Fredrick Banting's birthday and his discovery of insulin.

There I met Manny Hernandez from Tu Diabetes  and Mike Lawson from What Some Would Call Lies, and The Diabetes Hands Foundation.  I met them online, I am Facebook friends with them and follow them both on Twitter.  But they are more than statuses and updates...they are my friends.  Their kindness and good hearts are very real. 

 

Just like yours.

We spoke a lot about what I want to do with my life.  I fumbled through, trying to put into words exactly what my dream job would be.

And then as we were driving home from the city last night, it hit me.

I want to make other people feel the same way you all made me feel that night out on the patio.  I want to make people feel loved in the hardest hours.  I want to tell people, "I may not know exactly what you are going through, but I care...and I am here.  You are wonderful.  You can do this."

 I want to make people feel better.

There are so many people out there that feel alone.  I know many people like to use me as a worst case scenario.  "I thought my life was bad...but Meri's!  Wow!"  But I don't see things that way at all.  I have good friends, in town, online...all around everywhere that tell me they love me every day.  Friends that lift me up, and in turn make love a prevailing theme in my life.  There are so many people that don't have that.  They think they are alone.  They think no one cares.  They are scared.  They think their future has little hope.  Feeling alone and hopeless?  That is MY worst case scenario.

 

I'm not sure where I go from here, but I have a couple paths that I'm contemplating taking.  It's all very fuzzy right now, and some of it requires me traveling WAY out of the comfort zone of my computer keyboard, but I believe that even if I don't find a 9-5 job that fits that description, I'll find a way to do it anyway.

Because when I was/am in my hardest hour...words and love from good people like you have helped me.

I want to be that good person.

I want to help back.

I want to give back.

Moving forward, I'm going to make that my end goal.  And if I can make a difference in even one life, like you all have made a difference in mine?

Well, I'll call that an epic victory.

Love the pancreas your with.

I don't want to overly simplify my feelings towards diabetes. Complicated doesn't even seem to scratch the surface. All I know is that for now...diabetes is staying put. And since that is the case, I will now endeavor to riff off the old Stephen Stills song, "If you can't have the pancreas you love honey, love the pancreas you're with."

I've spent many a year loathing diabetes and its long line of insane protocols. When my third was diagnosed I'm pretty sure I melted into a puddle of tears and bitterness for a good nine months. Looking back, those deep seeded feelings of hatred and helplessness have only brought me three things: Heartache, TMJ from clenching/grinding my teeth, and Carpal Tunnel from writing it all out on my blog. Letting go of the anger isn't easy, in fact, I don't even know if letting it ALL go is possible. But what I do know is coming to terms with this disease, ACCEPTING this disease, loving our life WITH this disease...well that yields things like a better night's sleep, and a more relaxed me.

My children respond to my cues. If they see me worried...they are worried too. If they see me angry and upset...that angers them and upsets them too. Am I walking around the house singing praises to diabetes? Heck no! But am I trying to put it all into perspective? Yes.

I understand that everyone has different perspectives on everything. To one of us 80 is the perfect number, to another 100...to another 150. We all are individuals with minds of our own. In the spirit of New Year resolutions, I'm going to take what I know and mold it into something more beautiful. I challenge you to try too.

I know diabetes is hard.

I also know that enduring hard things molds us into more empathetic human beings.

I know that diabetes hurts.

I also know that the sensation of pure torture I feel when pricking my virgin fingers is completely different than the sensation my boys feel.

I know that diabetes is expensive.

I also know that my boys healthy futures are worth every penny of promising technology I can find.

Perspective.

Fighting diabetes...hating diabetes....it is ok. But letting those things take over is not. Hate is like acid to our body, literally and figuratively. It isn't healthy to live with perpetual sadness and helplessness.

Sometimes I just need to stand up and say, "They are ok! I am Ok! We will survive!"

Saying it out loud is liberating. Believing it is life changing.

We can love our lives with diabetes as a part of it. We can accept our lot in life and find joy in the little things even with diabetes strolling along side. Diabetes will always will be with us...which leads me back to the beginning...

Maybe our lives aren't everything we imagined they would be. But after diagnosis it is possible to imagine a new life. Can't we love that life too? Can't that life be just as amazing as the first? It may be a bit more complicated, but with diabetes in the mix, our victories are sweeter and the good days are triumphs in themselves.

I wonder if in the end, It all comes down to loving the life you're with.



(This is a repost from almost a year ago.  I had a few "I hate diabetes" days last week.  This week I'm trying hard to find joy in all things...my life...and even diabetes.  And PS  In the title of my post it is supposed to YOU'RE not YOUR.  Love the bad spelling you're with?)

The wave.

B and L had their first therapy appointments this week.  They both left with the biggest smiles declaring, "That was awesome!  When are we going back?"  A stark contrast to M and J's reaction. 

On the way home B shared with me an observation that none other than his school teacher imparted: 

"Imagine standing on the beach.  Happy, talking with your friends...and then out of nowhere a giant wave hits you.  That is how sadness works.  It washes over us when we least expect it."

No truer words have ever been spoken.

But this post isn't about grief today.  I want to twist the analogy a bit and see if it hits home for you.

"Imagine standing on the beach.  Happy, talking with your friends...and then out of nowhere a giant wave hits you.  That is how low blood sugars work.  They hit us when we least expect it."

Oh wait...here's a better one:

"Imagine standing on a baseball field.  Happy, talking with your friends...and then out of nowhere a metal bat hits you in the neck.  That is how low blood sugars work.  They knock the wind out of you when you least expect it."

Case in point, I saw two 40's and two 30's last week.

My head is still spinning.

The boys will have a few days when everything works as it should.  Basals are spot on.  Ratios are spot on.  All is right with the world, and then BAM!  Wave/Bat.  Out of nowhere.

The internal panic is so hard to describe.  As a parent I try hard to be calm and matter of fact. 

"Let's fix this."

But as a human being I begin my internal panic attack and think, "What if." All the while trying to pay attention to my protocol. 

Feed.

Check for Insulin on board.

Temp basal if necessary.

Recheck.

Repeat.

There are a lot of important steps and wisdom that need to come to the forefront of my mind during a panicked incident such as a 30 with a load of insulin on board...

My brain is running on 50% capacity as it is.  I'm nervous I won't make the best decisions, and since I don't  trust myself lately I've been over compensating with more carbs than they need.

Because I can't lose them.

 

(Whoa.  Where did that wave just come from?)

It is the griever in me that gives in to the knee jerk reaction to get them out of danger, and get them out as quickly as possible.  No...I'm not going over board...but I'm not following the rules of thumb I always kept myself to, either.

I'm scared more.

Scratch that.

I'm terrified more.

Lately, I lay in bed at night and wonder if the boys are breathing.  I think, of course they are, them not breathing would just never happen.  Then I think...shiz happens to our family that just doesn't happen to other families.  How does God think I am strong enough for all of this?  And then I remind God that I'm on my breaking point.  I NEED joy right now.  Anymore sadness and I'll break.  I'm sure of it.  I'm keeping it together...but it seems my "together" is held only by lightweight thread and Elmer's Glue.

I'm hoping that by typing this out, I'll be more aware of my problem and be able to deal with the waves with a more realistic philosophy.

"A wave?  So we are wet.  We dry ourselves and move on."

And not:

"A wave?  We might get swept out to sea...wait...is that a shark?!"

I understand why I'm feeling this way.  I just need to move forward and trust that everything will be ok.

That is a lot of trust.  Laying it all at God's feet has never been more real for me than it is now.  Finding HOW to do that has been a process. 

It is so much easier said than done.

I'm working on it though.

And in the meantime I'll remind myself that my boys have woken up every morning  so far, and they've been perfectly fine.

I'll get through it.  These waves/baseball bats just need to back off.  I started off this blog saying this post wasn't about grief.  Organically, it turned out that it was exactly what this post was about.

Just goes to show that this blog is my best form of therapy.  I never know what I'm going to get when I start typing.  I've had a good cry.  Things make more sense.

I feel better.

It WILL be ok.  Not okay is just not a viable option right now.

I can do this.

 

Therapy....CHECK.

 

Pep talk...CHECK.

 

Bring it.

 

Wacky Wednesday

Do you remember the book Wacky Wednesday by Dr. Seuss?  It was my favorite when I was a kid.

 

It starts out with a boy finding a shoe on his wall.  The book goes on to show all the wacky things he saw that day, all the while asking you to search for the things that are wrong in the picture.

It was/is a brilliant book.

This morning when my boys woke up with Halloween excitement hangovers, I couldn't help but look back at our Halloween and see ever so clearly how wacky our Wednesday really was.

To start off, B's best friend asked him to go trick or treating with their family.  Handling T1 on Halloween is tricky for a professional pancreas like myself.  To a layman pancreas, it's altogether complicated.  That didn't stop B's friend's mother from offering.  She was all, "I have your number, he'll call when he eats, we'll check.  It'll all be good."  And I was all, "((Blank stare.))"

I know.  Bizarro world, right?

Then after school my senior called and said he was going to hang with his friends and play video games all day.

Halloween with only two kids?  I can't make this stuff up.

I had Ryan's parents over, and his sister...my parents, my sister, her friend, and her kids.   We were a full house and the chaos was a good mask for the rainey day outside.

Then my sister and her friend took all the kids trick or treating.  All.  The.  Kids.  In the rain.  I got to stay home with my feet up and eat apple pie a la mode. 

B called with a 102 before he left to trick or treat, which led to me saying  "Eat 2 pieces of candy right away young man!" 

When he got back he was 69.  He got to eat more candy, and I got to not worry about it.

When L got back from his treating, because let's face it, there are no tricks when you're 8...he was 319.  Not surprising, excitement effects him that way.  But here is the really wackiest thing of all:

L looked at his number and said, "I don't really want any candy anyway.  I just want to trade."  He sat for the next hour trading candy with his cousins and was happy as could be.  When I told him to have a piece, he was very thankful. 

Where was my candy obsessed 8 year old boy, and what has Halloween done to him???

The boys went to bed 105, 114 and 179. 

And then an hour later they were all low.

I half expected to find a shoe on my wall the minute I walked into my bedroom to sleep.

Instead there was a picture of Ryan, smiling proudly that we conquered another day.

Wacky Wednesday?

You are welcome in my home, any time.

(BTW:  November is Diabetes Awareness Month!  Usually I blog every day in the month of November, but I have decided my swelly brain can't make that commitment this year.   I will be helping organize the World Diabetes Day Postcard Exchange, though.  Click HERE to find out more about it!)

Anatomy of a low.

He was peaceful.

His long blond eyelashes framed his round eyelids. 

Pink cheeks.  Full, soft, relaxed lips.

Peace.

As I picked up his black freckled fingertip, I paused to give him one more moment of calm.

His breathing was slow and shallow.  His entire body relaxed in its slumber.

SHUNK.

I pricked his fingertip, laying another dot on the landscape.  A bead of bright crimson blood appeared. I quickly pressed the test strip against it and watched it suck up most of the red.  I smeared away the remaining blood from his finger, wiping it on the inside pocket of my jeans.  The countdown ensued...the result was a surprise.

It is always a surprise.

59.  With insulin on board no less.

This meant a couple of things.  First, a temp basal.  I followed his pump tubing with my fingers, only to discover the pump rested securely beneath the weight of his body.  I adjusted my position.  Teetering on the edge of the mattress below him I immediately questioned my decision to let him have the top bunk.  Retrieving the pump meant moving my 8 year old son and disturbing his respite from the storm. 

I hoisted his arm towards me, and the whole of his torso followed.  Fishing blindly in the blankets I finally retrieve my prize...a blue Medtronic pump.

He stirred only slightly, turning his head to a more comfortable position.

My fingers found their familiar rhythm on the pump buttons.  It took seconds to change the settings.  I made my way down from my perch and walked purposefully towards the kitchen.

Opening up the low cupboard door, I let out a big sigh.  Which carb to pick?

Apple juice?

Fruit Snacks?

Banana?

Pudding?

I grab an apple juice box and a banana and head back to the bunk bed.  Breaking the seal on the apple juice box, I slip in the straw and touch the end of it to L's lower lip.

"Drink, baby."

His body goes into survival mode as he anxiously grabs the box and takes a long, encouraging sip.  He pushes out the straw with his tongue and rolls over the opposite direction of me.

I rub his arm.  "L, you need to drink sweetheart."  I gently turn his head back towards me and press the straw to his lips again.

He takes a small sip and turns his head away again.  We repeat the process a good six times before I give up.  He's drank 3/4 of the box.  We'll move on to the banana.

I break off half of the banana and rub it against his full sleeping lips.  He anxiously takes a bite and chomps contentedly in his sleep.  His hands grasp the air as if trying to find another bite of the banana.  He eagerly eats what I offer him, and when I am finished he brings his hands to his face and continues to eat the imaginary banana in his hands.

I gently hold his hands to make the charade stop, and rub his forehead to relax his body and help him return to his deep sleep.

I check the other two boys and find them to be in range with no IOB.  A battle won within the war.

Gently closing the door to my room I turn to knell at my bed to pray.  I offer an earnest prayer, praying for joy.  Praying for understanding.  Praying for peace. 

And most importantly...praying for my boys safety until I check them again in a few hours.

Dream my dear boys.  Dream and escape your diabetic life.

I'll live it for you, for now.

Gladly. 

Relish your escape while you can.

Rescued.

When you are having a bad time...

When you are lost and trying to find yourself...

When you need something to look forward to...

When you need to talk, but with someone who you know understands where you are coming from, because they know where you have been...

When you need a friend...

When you are struggling to sleep...

When you're stuck on pause...

When blood sugars reign and routine saves the day...

When you are looking for your smile...

There is no better cure than a visit from people far away.

People who share your heart.

People who love you despite your imperfections.

People who in many ways are your "same."

This last weekend Wendy from Candy Hearts, Kris from My Sugar Bugs, and Joanne from Death of a Pancreas flew in to see me and hang with my local D Mama friends, April, mom of 1 Type 1 son, and Susan, who has two boys with T1.

My heart is full.

If only for a weekend, my spirit was replenished.

If you are alone, find someone who is same.

And if you find that someone on the internet, don't think that the relationship has any less value than the ones that are right in front of you.

Because these woman who came to town embodied everything true friends are.  Our friendship was a real as the sunset.  As real as the ocean.  As real as the pie we relished.

The online community has once again saved me.  What would I do without you?

I am blessed.  Despite all the hurt, the grief and the confusion...

I am blessed.

Thank you girls for coming to my rescue. 

I hope one day to return the favor.

It's theirs.

I've always thought of diabetes as mine.  

No, I don't have diabetes per se, but I live it...and I take full responsibility for it times three.

My head is in the game 24/7.  I put so much work into diabetes...the diabetes hamster wheel in my brain is still running full tilt after all these years.  But lately it has become very clear that my boys have diabetes hamster wheels too, and they too have theirs running at a good clip.

I'm not super happy about that.

I always ran my hamster wheel so they wouldn't have to run theirs.  But as they have gotten older, they have begun to give their wheels more steam, and in effect, given diabetes more room in their brain for processing.

They are taking over their care slowly...but absolutely, surely.

The other day I was going to be out of town, in a meeting.  As a result, I wasn't going to be available for the boys calls during the day.  My sister in law, my back up pancreas, was subbing all day and wasn't able to field their calls either.  I spoke to the boys about it, and they all confidently assured me they knew exactly what to do.  They knew how many carbs to bolus for snack and lunch, and when to give a free snack if their blood sugar was low.  They knew what to eat for each specific low number, and they knew if they were high that they needed to bolus.

That day my boys didn't call me once, and each and every one did everything, perfectly, all on their own.

On the way home from school I praised them for their awesomeness, for which J replied, "What do you expect Mom?  This morning at breakfast you prepared us for every situation, including Armageddon." 

Then my baby L piped in, "Mom, we totally got this.  We don't even need to call you anymore."

Brain.  Explosion.

"No sweetheart, you need to call me.  Just in case."

It was then I realized I was having them call me every day for MY peace of mind.  Could they really do this without always checking in with me?  That would require me slowing down my hamster wheel.  It hasn't slowed down for fourteen years...is that even doable?

A couple nights ago I changed the insulin sensitivity on the two littles.  I checked them hourly for a good part of the night, making sure my changes weren't too strong.  L, my littlest, began to go low.  As I fed him a snack like a mother bird to her young, I realized that my boys were going to be on their own someday, and that someday was coming quickly. 

Who will feed them then?

I've always known one day I would set them free, but the thought overwhelmed me in that moment.  I freely run my hamster wheel for my boys.  Knowing that one day there will be steam coming out of their ears all the time?

I hate the thought. 

It is such a large stone to carry around. 

So much responsibility.

But here I am, knowing that they will willingly take all the responsibility one day...and they'll somehow be ok.

They will be ok.

We have come so far in this past decade.  Change is life's way of saying, "keep moving."

And I'm moving...even though I would rather freeze time and work through my own demons.

Like I said, I knew the day would come.  It just hurts knowing I can't shield them any longer.  They've passed their diabetes permit tests, I need to let go and let them drive...full on knowing there are going to be small dents and even big accidents along the way.  The hard truth is, they can't become able drivers without having a turn at the wheel. 

Good thing I'm a brilliant backseat driver.

The lie.

I see it all the time on Facebook.

I live with the mantra all day long in my own reality.

Oh yeah, I say it to myself.

And yeah, I know you say it to yourself, too.

As parents, as humans, we are brilliant at a lot of things, but one thing we are most brilliant at is finding fault with ourselves.

It all hinges on one giant lie.  And it is such a good lie that we often believe it.  We let it eat at us, and some days we even let it define us.

What are the words that have so much power?

"I'm not good enough."

"I fall short."

"Epic fail."

Do we all have areas to work on?  Absolutely.  No one is perfect.  Me?  <----- far from perfect.

But I think we let that little notion work itself into our swelly brains all too often.   For myself, the thought has crawled in, made its nest and settled down to hibernate for the winter.

How do I wake the beast and scurry it out of my head?  I can only imagine I need to start by saying to the universe, "I AM enough."

Just because I'm not perfect, doesn't mean I don't try my best.

Just because I fail sometimes, doesn't mean it doesn't kill me every time I let my child down.

Unfortunately for me...and most of you who read this blog...Diabetes only exasperates the problem. There are so many opportunities to fail with this disease.  Let me see...three boys with Type 1 Diabetes X 8 blood sugar tests a day...that equals 24 opportunities for failure a day.

And we all know that is the tip of the iceberg. 

Lately, especially, I'm having a hard time seeing my value.  Ryan was always my cheerleader.  When I was down, he was the one that lifted me up.  He wore a magical pair of glasses that saw me in a near perfect state.  My extra pounds?  He didn't see them.  My little rants?  He thought they were hilarious.  Do I really need validation to function every day?  No...I'm functioning.  Don't get me wrong, I'm not asking for accolades...I'm just coming to the realization that I need to find a way to love myself.  Ryan did the loving for me.  His love was what got me through.  Now I need to start doing the believing on my own behalf, and that is turning out to be a bit more complicated than I thought.

It's true.  Sometimes I wonder if I'm enough for the boys.

But as I look around at a world of imperfect people, I realize I love so many people despite their imperfections.  No one is perfect, and everyone that tries their best is enough for their family, and enough for me.  I can be enough for mine...

Wait.

I AM enough for mine.

Believing there is more to me than what I see in the mirror is a start.  Believing I'm only scratching the surface of my potential is the next step.

I need to close my drawers full of doubts.  I need to tidy up my brain cluttered with self deprecating mantras.  I need to clean house.

I turned in my first job application/resume packet yesterday.  As I laid my packet on the pile, I was surprised at my immediate sense of defeat.  Jumping back into the work force, putting myself out there...it going to be a rough road.  It is not going to help anything if I don't have self confidence.  Do I think I can do the job?  Absolutely!  It is the selling myself that makes me itch all over.

The core of my confidence volcano has been dormant.  It is time to light the fire...find my confidence, and own it.  Maybe it won't be a super nova right off the bat, but my points of light can put on quite a show.  I need to allow the world see.

Accepting who I am.  (Working on myself...but accepting that I am unique and have something to offer...) THAT is my next adventure.

Today I take that first step.

"I'm good enough, I'm smart enough, and doggone it...people like me!" ~ Stuart Smalley

Alice in Diabetesland

11:00pm

I was Alice.  I was naive, and curious.  When I ventured towards the bedroom I had no idea what would be on the other side of the monitor.  I sat comfortably on B's bedside and stroked his cheek gently.  Oh how I wish I could know peace like that.  What a wonderful adventure his life is at 10 years old.  I envied his ablity to sleep so soundly.  Growing curiouser and curiouser I brought the blood sugar monitor to his sweet hand and squeezed out the precious blood from his finger tip.

"Hi."

In an instant, I fell directly down the rabbit hole.

11:30pm

I was the rabbit.  Chasing the number down, never stopping to think straight.  Rushing.  Worried.  Insulin is what he needed.  Insulin!  I checked his blood sugar.  591.  Progress!  I'm going in the right direction!  I bolused nimbly as that is what I do best!  Rush rush rush.  It's late!  It's late!  I check the clock.  I'm going to be late for my sleep.

12:30am

I was a guard.  Just one more check in the deck of cards this game diabetes has to throw at me.  I will do my duty and check!  I will put off sleep to make sure he is safe.  Diabetes is my master.  I will obey.  I dutifully check his sugar.  440.  Bolus again.  I know the protocol.

1:30am

I was the Red Queen.  I'd fallen asleep and my alarm was going off.  I rage snooze three times.  I'm angry.  A queen shouldn't have to lose sleep!  I throw my covers off in regal fashion and make my way defiantly to B's bedside.  The meter says 380.  I bolus and immediately I am met with heresy!   "No delivery."  How dare that pump defy me!  I will bolus again, and this time it will LISTEN!  But yet again it dares to mock me with its "No delivery!" 

OFF WITH THE SET!

I burst to the supply closet and nimbly grab a new quick set.  It is put on efficiently, as stabbing children with needles is second nature to me now.  I'm numb from it all.  A queen does what she has to do and doesn't look back.  Hard decisions must be made.  I rage bolus.  I am wide awake so I take a Tylenol PM.  I will sleep now.  I am the queen here, I will not allow diabetes to take away my sleep!

2:30am

I am the caterpillar.  My sleeping pill has made me a bit woozy.  My alarm goes off...I can't find the snooze.  I'm high on sleeping agents and like a drunkard make my way to B.  He is 373.  Almost what he was an hour before.  I dreamily bolus and add a bit for good measure.  I don't remember how I got back to bed.  But I remember being confident in my bolusing decision.

4:00am

I am the Mad Hatter.  I'm not all there.  I grin vivaciously at the alarm clock.  I clank down the hall, bumping doors open...I don't care who I wake.  Come to the party!  We are bolusing!  Have some tea with me as we check B's sugar AGAIN!  I live my life at this table, and it is where my crazy shines!  I flip the overhead light on in the boys bedroom.  So what if they wake up.  I'm up!  Let's do this thing!  It takes me some time to figure the meter out.  I put the strip in backwards and giggle a little bit.  277.  FINALLY some progress.  The pump says to give a bit more insulin.  I grin and do as I am told.  My brain is made up of wet noodles at this point.  I shrug hoping I did the right thing, and fall face first back into bed.  I'm not in my right mind.  The next alarm will be 6:30am when I must wake up for the day.  I take off my nurses hat and dive into a vivid drug induced dreamland.

6:30am

It is over.  Was it all a dream?  B's blood sugar is 112.  Did I imagine the crazy?  From the corner of my eye I see the aftermath on B's dresser from the night before.  Bloody test strips.  Needles, a box of quick sets...insulin.

It was all real.  The wonderland of craziness and real life merged together in my conscience and created my reality once more.

What character am I now? 

I am all of them. 

I am a D Mother. 

I am me.

And most of all...I am tired.

 

Diabetes is a Sailboat

14 years ago I was told to put my child in a sailboat, alone. He was to journey out to sea and I was not allowed to escort him.

You can imagine the fight I put up. I yelled and pleaded. I dropped to my knees and bargained with God. I had a fit. But alas, my flailing was fruitless...he was taken out of my arms and thrown into the boat. I was given no choice. He had Type 1 Diabetes and there was no going back. He could not stay on shore. He could not live without the boat...it was part of him now.

I watched the boat go out to sea and I cried anguished crocodile tears. The world seemed to be in constant motion, while I was stuck on pause, mourning his separation from the shore.

The viciousness of the waves were horrifying.

My child was helpless.

I was helpless.

I would have done anything to be on that boat. I willed his diabetes to enter my body so I could switch places with him. But that isn't how life works.

Unfortunately.

I was given two tools to help my son. A telescope and limited control over the weather.

I have vigilantly had my eye set to that telescope for 14 years. There have been long stretches when I wouldn't leave the scope. I wouldn't shower. I wouldn't eat.

I have had comments throughout the years that my attention would be better placed somewhere other than the boat.

What they don't understand is that my child is on that boat. My heart. My soul. How could I ever walk away from my scope?

My one advantage is, with insulin and food, I can sometimes control the weather. I can smooth the waves and bring him close to shore. On those days it almost feels he is on land with me. On those days we dance together and laugh, and joke that the ocean has nothing on us.

But other days the storms come in out of nowhere. The black clouds close in and the numbers ebb and flow with the powerful tide. On those days, I watch my son ride those waves and I spend the day at my scope...determined to change the color of the clouds. If his boat capsized...I don't know what I would do.

Sure...he is above water. Sure...he is surviving. But on the stormier days his sea sickness weighs so heavy on my shoulders, I'm sure I am going to run out of strength, and one day drown in despair myself.

My son has grown up on his boat. I am in awe every day of his constant vigilance, and his nimble control of his craft. He is an able captain now. He can hoist the sail, he can watch for the storm clouds. He can batten down the hatches. He can steer that boat away from immediate danger...he FEELS the sea. His intuition is inspiring.

Three boats I have set out to sea. It does not get easier. Every boat I have released has killed me a little bit inside. I live my life on the shore waiting for storms, hoping for sun...watching each and every wave.



It is exhausting. It is tedious.

But on the summerlike days, when the boys drift closer to the sand where my feet stay solidly planted...they hitch their boats together. With their boats abreast, we can sit together and watch the sun set on the horizon and know that we can do this. We see the other boats adrift in the ocean, and their resolve and optimism lifts our spirits.

A bit ironic that the most amazing views...the most amazing perspectives...can be seen only from a boat.

No, it isn't easy. It isn't fair. The children with their feet on land are behind us, ever present...running around with no cares.

They don't have an entire craft to navigate. If a storm comes in they can simply get in their cars and their parents can drive them home. They are not required to have constant courage or patience. They are not required to grow up quickly to take on captaining their own ship.

They are free to run.

Freedom. A gift my boys yearn for.

Freedom from navigating. Freedom from weather.

Diabetes is a sailboat.

Adrift in the sea.

The boats rock gently tonight. I can see my sons at the helms. Their silhouettes against the nights sky.

Each one, every bit a hero.

We pray that one day they may set their feet on the sandy shore and rest.

That one day they may find respite from their journey.

Type 1 Diabetes is a sailboat.

And 40 new sailboats take off from the shore, every day.

They aren't just boats underway with numbers in their wake...they are families lives, changed forever.

They are significant.

Every single sailboat is significant.

And every captain, an inspiration.

(I felt the need to revisit this post from July 2011.  Last night at the midnight check, the waves were smooth for the first time in awhile.  I looked at their sleeping faces and thought of all the storms we have weathered lately.  My boys are my heroes.  All four of them.)

The ten year quandary

I read an article a couple weeks ago that Houston's MD Anderson's Cancer center announced they are going to shoot for the moon and attempt to cure eight types of cancer within the next ten years.

One of those types of cancer is Melanoma. 

How do I feel about this?

Surprisingly conflicted.

On the one hand, WOW!  Good for them for going for the gold!  What a huge blessing it would be to know not another family would need to suffer like ours.  What an amazing gift to know that in the future my children wouldn't have to fear such a disease!  It is such a hopeful statement.  Bold and exciting!  Can you imagine?  I certainly can!

Then there is this tiny selfish, angry part of me that says, "What the what????  Why couldn't they have announced this ten years ago?"  I feel like an awful person thinking this way.  What's happened has happened...but if they think they can cure it, why has it taken so long for eyes to be opened?  If they think they actually can achieve this...why now?  Why not before?  Why not for my Ryan?

We can't go back in time.

I know that.

Then there is the D Mama bear inside me roaring at the idea of telling others, "Ten years."

When J was diagnosed with diabetes we were told there would be a cure within ten years.  We were newbies then...and a bit naive I suppose.  We honestly believed them, and left the office thinking Our Diabetic Life would be a temporary thing...

Seven years later when L was diagnosed we were told the same thing.  "Ten years and there will be a cure for sure.  They are getting closer!"

And a year later when another nurse tried to tell us the same phrase after B was diagnosed I stopped her and made her promise never to say those words again.

Conflicted. 

I feel like I'm in the twilight zone.  Ten years from any point we are currently at, there will be a cure for everything.  Impossible, right?  We'll never get to that point because the time is always determined from this exact point.  And this exact point changes minute by minute.

Curing Melanoma in a ten year time frame?  Damn, I'm glad they are trying.

But I hate that I lack faith in the outcome.

I hope I'm proven wrong.  I PRAY I am proven wrong.  PROVE ME WRONG MD ANDERSON CANCER CENTER!  Please!

It's about time this world started curing things.  It's about time we stopped putting band aids on the problems and patting ourselves on the back for putting off the solution. 

Maybe a cure will come for these deadly cancers because the people who have them don't live long.  The money made off them is limited.  I don't know.  I know of people who believe that pharma is making millions off Diabetes, and is hurting our cause for a cure by blocking any progress towards it.

Yeah...maybe I'm one of the people that feels that way too...sometimes.

Can progress really be made on any disease?  Has society really cured a disease yet?

Regardless of my hesitation.  Regardless of my sadness.  Regardless of my tainted view of miraculous future cures...

Regardless of everything, I'm glad they are trying.  And I support them 100% in their noble efforts.

Even if it is too late for Ryan, maybe it won't be too late for someone else I love.  <---- and that's worth putting all my conflictions asides, and allowing myself to once again feel a pang of HOPE inside my heart.

Dreaming forward.

When I was a little girl my family would vacation every summer.  It usually entailed a long miserable road trip with the destination being a relative of some kind.   Imagine six kids in the back of a two toned 1970 Chevy Beauville G20 Van with nothing more than tumbleweed to keep them occupied.  Yeah, it wasn't pretty. 

But my mother would always say, "Look out the window and dream about something."  So, I would look out the window and dream I was a princess trapped in the dessert with a bunch of monkeys trying to attack me.  The prince would always save me, and I always lived happily ever after.

Daydreaming isn't something I've done in a long time.  I'm out of practice, and now more of a realist than anything else.

As an adult, it's hard for me to sit back and imagine something new.  I'm comfortable with the old.  But here I am forced into a new world, and forced to try new things.

Forced to dream. 

A friend of mine recently told me I need to dream big.  She urged me not to sell myself short, and encouraged me to believe in myself.   She said she believed there was really something to saying what you want out loud, to the universe.  Sending your intentions out seems to make dreams come to fruition.

"Like my magic rainbow tunnel?" I asked like a three year old.  "On the way to the Endo in the city we pass through the rainbow tunnel and I always hold my breath and wish as many wishes as possible in the short time we are inside.   It's crazy awesome. "

"Yes like that," She said humoring me..."Except, all the time."

And then the epiphany hit.   I need to live my life as if I'm always in the tunnel.

I need to be constantly praying and living out loud...sending what I hope my life will become up to higher powers.

As I sit here now reflecting on what I dream for the future, it's hard to find a clear picture.  I already thought all my dreams came true.  Finding new ones doesn't seem right...or fair.

Dreaming of a future without Ryan by my side is like watching TV in black and white.  There is no vibrancy.  It is flat,  and lackluster at best.

Will my future ever be in HD?

I hope so. 

If Dorothy can go from black and white to color,  can't I?

Dorothy escaped those monkeys,  and all she needed was her own intentions  to move on.  She always had it in her power to get where she needed to go...she didn't know it until the end, but it was inside her.

Is it inside me? 

I'm not a character in a movie. 

I'm not a princess in the desert being chased by monkeys either.

 I'm just a woman, with four children, who is in search of her own Yellow Brick Road.

The storm has come.

I'm flying in the eye of the tornado. 

What I really need to do now,  is find a way to steer this thing.

The sunset.

I'm trying hard not to be selfish, and remember that Ryan is in an miraculous place.

I'm trying hard to remember he deserves this rest.

I'm trying hard to remember he is happy, busy, and closer than we think.

But my emotions get in the way.  I want him physically here with me.  I know that is just part of the process, but it doesn't change the fact that my soul feels ripped in half.  I want him here. <--- insert tantrum.

It's been a daily struggle as I try to remember he is in paradise.  My soul feels as though it is recovering from surgery, and now it seems I'm just watching a giant scar of missed opportunities form.  This last week has been the hardest for me emotionally.  I'm trying to sort through all the feelings and finding that I'm landing short on any kind of organization at all.  My emotions are like a teenagers bedroom...everything strewn all over.  I never know what emotion I'm going to pick up, or even why.

But last night my soul was soothed...if only for a few minutes.

It was quiet, it was peaceful, and it was amazing.

I had an appointment just north of town.  As I began my drive I immediately saw the brilliant sunset.  It was an especially hot day, and the sunset was especially breathtaking.

As I entered the freeway I had this inexplicable feeling of awe and peace.  The sky painted with streaks of orange, red, yellow...and purple?  Yes, purple!  The thin clouds luminescent as the backdrop unfolded before me.  What word describes it?  Astounding, maybe?

The freeway has just been repaved and I felt as if I was floating, taking in the amazing scene. 

And then it hit me.

This awe, and peace I was feeling?  This sense of complete surrender to gods beauty?  I was being afforded only a small taste of what Ryan gets to experience every day.   As the more brilliant parts of the sunset moved to my left I kept my eye on it as long as I could.  Mouth agape, my body weightless...I tried to put my finger on the gravity of the moment.

And then the peace surged into excitement.  It took me a couple minutes to realize, I was excited for him.  In that moment I knew he was living, and thriving.  In that moment I knew he was with his grandfather, and all his family...and I knew he had the benefit of the bigger picture...and he wanted me to have it too.

Ryan always loved an adventure. 

 

I'm overwhelmingly blessed to know he is experiencing his greatest adventure yet. 

I won't ever stop missing him...but when I miss him most, I'll remember the 10 minutes I was granted a glimpse of his life, and know that when my journey is through I will be able to stand beside him and tell him I always tried hard to be happy for him.

He deserves this time. 

It doesn't make everything ok.  But it makes it better.  And better soothes the scar, and fades it just enough to make a difference.