La-bor-atory

My boys never wake up low.

Okay.  Never is a pretty final word.  Let's just say, lately...they rarely wake up low.

But this morning they woke up 55, 63 and 103.  Why?

Because the boys were getting their fasting labs done this morning, silly.  And nothing can be easy when it comes to diabetes.  I'm pretty sure that's a rule or something.

Anyway, they were low.  And understandably,  I was furious inside.  I was already 6 months behind getting them there.  I already forgot to bring them in every day of spring break last week.  This was my last chance to get it done without missing school.  Sure, technically Monday was an option too...but that is the day after Easter, and there was no way I was going to get labs done with pure chocolate running through their veins.

Wild eyed and panicked I say, "This is still happening!  Get dressed!"

I have the two boys with lows put in a temp. basal of zero for one hour.  Seriously, with the dawn phenomenon, and the way we stack insulin in the morning...there was no way they would drop more!

Right?

I told myself that anyway.  As we were walking out the door my 55 went up to 67.  So I was confident we could pull this off.

Except we show up to the lab and it seems the entire population of our town proper has shown up for their fasting labs this morning too.  I hear someone tell someone else the wait would be an hour and a half.  Outside I am completely calm and cool.  Inside, alarms are ringing all over the place...in my gut, in my swelly brain, in my heart.  But my stubborn soul is screaming inside, "This is still happening!"

So since there isn't one place to sit in the rather large waiting room, my boys sit in the hallway while I wait in the lengthy line.  After about forever, with only one other person in front of me in the registration line, my swelly brain spontaneously hatches a plan.

I signal for the boys to come wait in line with me.  You should see them...they look like death.  They are pale, and mad that we were there, and the littlest was practically in tears.

It was perfect.  I had a leg up on all these other ticked off people.  Sure everyone had pathetic faces, but my kids had cute pathetic faces.  This was going to work.

We walk up to the counter, and totally casual like I say, "Hi.  All my boys have type 1 diabetes.  Two of them have low blood sugars right now and need some juice to get up.  Can you check if they can have the juice now while we wait, or do the lab orders indicate that isn't ok."  (See.  I'm playing stupid.  I know the lab orders say they can't, but I know if I ask to skip ahead of everyone else, I would get the eye roll.)

The woman took one look at the boys faces and said, "Wait here."  She walked in the back and then returned with a lab technician.  "This is Marcy, she'll take you right now."

I didn't turn around.  I wouldn't turn around.  Because in an instant I could physically feel the gasps coming from the whole of the waiting room population.  We beat the system.  I didn't lie, they were low.  They couldn't wait an hour and a half, although we could have come back another day.

The boys took it all like champs.  I'm pretty sure this is the first time ever there were no tears.  Although I'm against growing up altogether, the boys growing up does have its perks. 

 

 

Urine tests weren't so successful.  L couldn't do it.  He couldn't go.  I give him an "A" for effort though.

All in all, we dodged a bullet and made it out alive.  Literally.

 

 

So obviously, I needed to reward the boys for valiantly sucking it up...

Donuts as big as their heads?

You betcha!

 

On heaven, life and love.

Well, it looks like I peaked.

My last post garnered an obscene amount of hits.  In fact, the most hits ever in the history of Our Diabetic Life. That is a lot of pressure, since obviously I can only go downward from here.  At first I was intimidated to write again, but this morning I woke up feeling liberated more than anything else.

My last post was a happy surprise.  I don't have to "live up to it."  I can write what I want.

Translation:  I'm going to my "special place," so brace yourself.

My eyes have changed.

When I look out the window I see a different world than I did a year ago. 

Everything is a miracle to me.  The blooms on the trees.  The clouds in the sky.  The cars on the road.  And as amazing as all these things seem to be, my shifted perspective helps me to see...they don't hold a candle to heaven.

"Heaven."  "The Spirit World."  "The afterlife." Whatever you want to call it, has become real to me.  As real as the school down the street, or the Super Market around the corner.  I don't only hope for a heaven, I sincerely believe it is there. 

Yesterday I lost another friend to cancer.  Dr. Richard Rubin was in every sense of the word, wonderful.  The first time I heardhim speak the tears flooded.  The second time I heard him speak it was all I could do not to run up and hug him.  When Ryan was at the last Friends for Life conference in Orlando saving seats for Dr. Rubin's lecture, Dr. Rubin found his way to the seat next to Ryan and said, "I think we are supposed to be friends."  Not only were they both fathers of children with diabetes, but they found they both had cancer in common too.  They hugged, they talked, they cried together and then they wrote to each other, until Ryan passed.   After Ryan passed he continued to write to me.  And in his last few months his notes were full of only appreciation.  His family.  The flowers.  Love.  That is all he spoke of.  That was all that was important.  And in Ryan's last days...that was all that was important to him too.

I think we are missing the point on this "life" thing.

We fret so much over the details, we forget to appreciate life...and to simply smell the flowers.

We make things so complicated that happiness, and beauty, and gratefulness get lost in the chaos.  If we believe that life doesn't end here, and we believe that this life is just a small dot, (although important dot,) in the grand scheme of things...how can we not let that change our perspective?

It seems to me, love is all that matters.  Seriously.  Loving our children.  Loving our families.  Loving our neighbors.  Loving the miracles that we are afforded.  When we are close to death, we will see it clearer.  Maybe I'm fortunate?  I feel very intimate with death, and as such I'm feeling loved in a very real...different way.  A heavenly way?

Heaven is becoming so real to me that I wonder as I mourn Ryan's death, I wonder if he is in heaven celebrating his birth.  I wonder if he pities me when I cry, because he knows that our separation is so temporary.  I wonder if I really knew what he knew...if I would even cry at all.

I wonder if I'll ever get this life thing right.  Will I ever truly appreciate the important things like I should?  Will I let my emotions tear me away from people that I truly love, and need in my life?  Will I walk by a flower and not see that it was put there just for me?  Just for all of us?

What am I missing out on as I let the worry of the world, the hastiness of it all, cloud over my blessings?

If heaven is all about love, and I believe it is...then what is the purpose of us being here?  I'm beginning to believe that part of that purpose is to forget ourselves and find the goodness and love in others.  Also, to find the true meaning of faith.

My husband, since the day he heard the words, "Metastasized cancer," had the kind of faith, and hope that I think all of us need to truly live.

Dr. Richard Rubin had it too.

A couple weeks ago, Richard sent me this poem he wrote after beginning a new round of chemo.

I think we can all learn from him:

I am not afraid

 

As I approach death’s door and prepare to knock

Truth be told, I have been preparing since the day years ago

When I first heard the words “aggressive cancer”

Through the early times of encouragement and hope

Through the middle times of treatments that worked and those that did not

Through the recent times of chemotherapies that work until they work no longer

As my body weakens, my spirit strengthens

A small fire within that sustains me

And warms those who love and care for me

Drawing them closer

To share what can be shared

As I approach death’s door and prepare to knock and enter

I am not afraid

I need to let go of my fears and just love.  Not judge.  Not hate.  Just love.

It's easier said than done I know...but when the end comes, it will be clearer to me...to us all.  I wonder if we need to wait that long, or if it is possible to internalize that perspective and let it change us now.

It's already beginning to change me.  I hope I can hold onto this perspective long enough to put a dent in all my pride.  I don't want you to think I'm walking around like Mother Theresa ministering to and loving every person I come into contact with.  I'm not.  Not even close.  It's just it seems everything I knew about life has been turned on its head.  The world seems out of focus a bit as I realize that maybe I'm seeing this life thing all wrong. 

Maybe if I tilt my kaleidoscope a little bit, I'll get even a more beautiful picture.

It's worth a try anyway.

Our Diabetic Life in drawings

A typical day.

I wake up in a cold sweat at 5:10am realizing I slept through my alarm...

I go to their rooms to check to see if they are breathing.  They always look like they're dead, and they're breathing so shallowy I can't see their chests rise and fall...so of course I have to poke them.

 

Then I roll them out of bed and make them breakfast.  And like the old adage says: if you make a child with diabetes breakfast...they want to know how many carbs to go with it.

 

Then I send them to school.

 

Then I do the same things regular people do...but one handed, or with one eye always on my phone.  The phone can't leave my sight.  Ever.

 

 

 

 

 

But the phone call from school always comes at the worst time.

 

 

And then I have to dust off my crystal ball because the phone call usually goes like this:  "I ate most of my sandwich, half my chips, four bites of my apple and a cookie Tommy gave me..."

 

Also, when I drive around doing errands, I'm so emotionally spent I sob like a baby to songs that were never ever remotely meant to be emotional or sad...

 

So far the kids have made it home alive every day.  But someone is always low.

 

Or high.

 

Then I make dinner and before I can fill up my plate, they have already filled their plates and eaten their food.  I have no idea how big their portions were, but inevitably I'm asked:

 

When they finally go to bed I check all their sugars and decide if they can make it the rest of the night without checking them again.  Usually the answer is no.  But I do a lot of math and negotiating with myself before I come to that conclusion.

 

Then I set my alarm and pray that my alarm fatigue won't act up that night.  It's already midnight, the alarm is set for 2am.

 

Then I go to sleep and dream of numbers.  And then wake up to my alarm, in a cold sweat...wondering if I snoozed it a hundred times, and in essence...slept through it again.

 

(PS  Drawing is hard.  I pretty much gave up on trying after picture number 2.)

Fighter vs. Fighter

He is peaceful.  Calm.  Asleep.

His breath so shallow it is almost undetectable.  He lay there with the innocence only a sleeping child could ration.  His lips soft and relaxed.  His cheeks flat from sheer relaxation.

The game is afoot.

I reach for his hand and am fooled into thinking tonight will be easy.  His wrist is limp.  His hand easily surrenders to my grip.

I lay the lancet on the side of his fingers and engage the needle.

SHUNK.

And abruptly, he jerks his hand violently...valiantly attempting to escape.

I'm ready though...I tighten my muscles, struggling to keep control of his arm that suddenly seems to have the strength of the Incredible Hulk.

He won't easily give in.  He still resists and he rolls the whole of his body over to the other side of the bed.  But I still have hold of his hand, and I still think I can retrieve the blood.  I hold the monitor up to his finger and just as I begin to squeeze out the one precious drop of blood I need, he renews his resolve to win the battle and endeavors to jerk his hand away again.

As I tighten my grip and try hard to hold on, I realize I am in the midst of squeezing out a drop...and in my battle to retain equal resistance, I have now squeezed out enough blood to run a complete set of labs on him.

I up the ante and hold his arm steady between my arm and my body, leaning against his body to keep him from rolling over again...you know...as only an exhausted, full of love, wild-eyed, determined mother at 1am can... 

The monitor drinks from the pool of blood on his hand and gives up a number.

It is over.

I release him and his body goes immediately limp.  Completely oblivious to the battle it fought seconds before.

Nothing like a good wrestling match with your 5' foot 2" 11 year old son in the wee hours of the morning to get your blood flowing.

This has been my experience with B the last couple weeks.  I've changed lancets.   I've tried to wake him a bit before I tested...all to no avail.  He likes to mix it up though.  It doesn't happen every night.

Like J's night terrors, I am sure this is a phase that will pass.

Thankfully he doesn't remember in the morning that his mother had to body check him to the mattress just to get a blood sugar number.

Thankfully also, I see the humor in it all. 

The silver lining?  He's a fighter.  I'm totally cool with that.

Strings attached.

(I'm aware this blog post is very similar to the last blog post I wrote one week ago.  It's where I'm at. I've been seriously itching to write all week long, so I sat down and this is what came out.  It is what it is I suppose.  I'm sure I won't be this pathetic forever.  Really, pretty sure.)

I feel like a marionette.  I clumsily walk through my day with a goofy look on my face hoping that no one notices my heart isn't in it.

I take big steps planning to cover a lot of ground when really my life is playing out on a confined stage with an audience that is rightfully absorbed in their own drama.

Sometimes I pause and look around me.  I wonder if anyone can see the panic in my heart.  The tears that sit in the corner of my eyes.  I wonder if my gestures are so grand they give me away.

With grief, there's always strings attached.  My limbs are a slave to my feelings.

But the show must go on, and while my brain sits on autopilot, just trying not to tie myself up in knots...my body moves.  Part of the world, but separated by what I know.

I know what a gift happiness is.  I know when you lose it, you lose a big part of yourself.

I know that some people survive disease and some do not.  I know that hearts can break in half and your body will still move.

One foot in front of the other.

One long day after another.

And I wait for a change.  Some kind of change in myself that will help me to see my blessings clearer. 

"Life is what you make of it."

"It's up to you how you deal with life's challenges.  You can let them build you up or tear you down."

All these wise words mean nothing when you are suffering.

Being half of a whole for 20 years, and now losing that wholeness...

It can seem so hopeless at times.

This process of making me a stronger person is terrifyingly long, as I'm just at the beginning of this seemingly endless road.  I'm only six months in and I'm wishing the hurt would ebb.  Yet it flows like a mighty river into a mighty ocean...no beginning...and what seems like no end.

I know this is part of "the" process.  I know I'm following a pattern set long ago by widows before me.

There is comfort in that.

Until I find my happy again, I'll take my wide clumsy steps throughout the day and try to make the kids smile.

And in the process, search for a place in my heart to hold the grief that isn't so delicate.  A place where the hurt can be confined somewhat, as to not have control of the whole of me. 

It hurts.

The shock has officially worn off, and the waterfall is in full force...drenching me in my new reality.

He is gone.

He isn't coming back.

You would think after 6 months all my wounds would have scabbed over, but my emotions are rawer than ever.  I see with perfect clarity what has happened.  I'm feeling the grief in every pore. 

I'm falling apart.

Today I was sure my eye sockets would cave in from all the tears I have shed the past week.  I look over at his spot on the couch and it physically hurts knowing he won't sit there again. 

The worst part is the kids are in the same boat.  They are hurting more today than ever.  I've seen more tears from them this week than in the past 6 months.  I feel completely helpless.  All the words I use to comfort them, I try to internalize to comfort myself.  I try to believe, "It will get better.  It won't always be this hard."

But even though I do believe those things, right now, "getting better" seems so far off.  I wish I could numb it all away for them...give them a shot of love that would hold them over day to day.  But instead I have to watch my children travel through the horrific realization that their father has died.

I've tried talking to them about the afterlife.  I've tried explaining that we don't see the full picture here on Earth, but I'm realizing what they need most is just a quiet understanding.  Hugs.  And I love yous.  Explanations and promises of a brighter future aren't sinking in right now.  The hurt fogs over the hope.

I read a story in a hospice book as I was waiting for one of my boys to get out of therapy.  It likened the person who has passed to a ship.  When the ship is close to our shore it looks strong and magnificent, but as it goes out to sea it seems smaller and insignificant.  The fact is that ship is still strong and magnificent...our perspective just makes it seem diminished and out of our reach.  But as the ship leaves our view, and we are saying Goodbye, there are others on further shores that see the ship coming their way, and are saying, "Here it comes!" 

He is still Ryan, somewhere.

Somehow that above sentence helps me a bit.

He is still Ryan.  He hasn't just evaporated.  He isn't gone forever.

Someone needs to tell my tear ducts that.

 

Kinder. Gentler. Understanding-er.

There is a story that goes like this:

A man went to his doctor and said, "Doctor, I'm worried about my wife.  She is losing her hearing and she won't admit to it.  It's getting bad.  How can I get her out of denial so she can get some real help?"

The doctor offered this advice:  "Go home and when her back is to you, say her name quietly.  Increase in volume until she answers back.  This will give you some idea how bad the problem really is."

The man agreed the plan was brilliant and rushed home to his wife. 

As luck would have it, when he opened the front door he could see his wife across the room doing the dishes.  Her back was to him...it was perfect!

He started tentatively, "Honey, I'm home."

Nothing.

He took a few steps closer to her, and a little louder said, "Honey, I'm home."

No response.

A few steps closer and much louder now, "Honey, I'm home!"

Silence.

He continued the pattern across the room.  A few steps, a louder call out, and no response whatsoever from his wife.

Finally, He was right behind her, and with his head down, heartbroken for his dear wife, he could barely muster the strength to whisper, "Honey.  I am home."

And at that moment his wife whipped around and said, "Yes, my dear.  And for the tenth time...I KNOW!"

...

Sometimes it's hard to tell who has the problem.  Sometimes the way we see things can be skewed.

Not everything is what it seems. We need to be more gentle with each other.  There are a lot of lessons to this story, but the one that sticks out most to me is sometimes we see a person and their life/situation in a certain way...and we think we have them figured out, when in fact we have it all wrong.

Sometimes what we perceive isn't what is real.  I'm sure many of you have perceptions about my life that are way off base.  I'm sure I have perceptions about some of yours too.

Additionally, when we are brash with our opinions, and speak in a way discounting another's feelings...it just isn't right.

Can't we all be kinder?  Can't we respect that we are different?  Can't we understand that even though we feel strongly about something, someone else's feelings are just as strong...and more importantly...just as valid?

We all have the right to our own choices and paths. 

When you are part of a family...a community...a friendship...nothing is worth losing those connections over.  Pointing fingers never solves anything, because as my opening tale illustrates..there are always two (very valid) sides to every story.

Love is the common thread of humanity.  Snipping that thread may condemn the person we are angry at, but it condemns us to a lonely life too.  Everyone loses when forgiveness is held hostage.

Burning bridges can be important when escaping an abusive relationship...but otherwise it just gives our love more boundaries...

And really...'boundaries' and 'love' don't work well together at all.

Cure-O-Matic

The headlines are hurling out of what seem to be a Dr. Seuss like machine. 

 

 

Words like "5-10 years" are being used systematically as if popping tic tacs into ones mouth.

Hope is being inflated like California gas prices.

And still, I sit here at my computer disappointed.

After 15 years of this I am a realist.  But you can't take away that part of me that instinctively hopes.

Hopers gotta hope, right?

Last week I attended a JDRF event and was given the news about Viasyte.  The woman I spoke to was beyond excited about the technology and explained that JDRF doesn't give millions of dollars to just anyone...they believe in this!  Very simply put, it is a packet put under the skin that would secrete insulin and that insulin would be protected from the immune system attack. 

So I say, "OK...I'll take 3.  And can I get a discount if I do the under the skin surgery myself?  I'm mean...I'm practically a doctor...I could totally do that."

Then she says, "And it will be available to the public in 5 to 10 years!"

And then my brain says, "DONG!  Did she really just say that to me?  She works for JDRF, please don't tell me she used the phrase '5 to 10 years.'  Please tell me she knows better than that."

But she kept insisting on the time line, and I kept covering my ears, "Lalalalalalala!"  I'm glad JDRF is sold on it...but don't tell me you've got something amazing until it's available to me...like "today" available to me. 

Seriously.  Don't.

And then yesterday, (oh, poor yesterday!) there was much hype about an announcement that would announce an advancement that would, more than anything, be a game changer.  (Which I get is a very poorly written sentence, but really...there was an announcement pre-announcing an announcement.)

The announcement stated that DRI (The Diabetes Research Institute,) had a breakthrough that "would change our life as we know it."  Real advances towards the cure we've been waiting for.

Last night when the site went live at midnight with the breaking news, I eagerly clicked over and watched this video:

And then I scanned down and saw this:

 

Really?  If you haven't figured out how to get this stuff working without anti rejection drugs...then you have no business touting this as THE advancement we've all been waiting for.

Now listen, lest you think I'm completely negative about all of this: Don't.

I am excited.  I'm excited to think that one day we won't have to count carbs, and bolus for meals.  I'll get in line for this BioHub thing.  That would be a dream come true for sure.  I'm all in.

But It's not changing our life as we know it today.  Or even next year.  Or even in 5 or 10 years.  So call me back when it is tomorrow. 

Or next week.  I'm flexible like that.

 

Look at the Omnipod debacle. They have been promising smaller pods for ages now, and people are seriously sweating bullets waiting for those suckers to come out. (And we are talking just months here, not years.) I hear it will be April now.  I pray for the podders sanity, it is so.

I don't care who we are...whether we say we believe there will never be a cure, or we are wide eyed looking at every advancement as THE answer to all our problems...either way, deep down...we have that small seed of hope. 

Watering that seed prematurely is just cruel.  It will grow and blossom before it's time...and then when it bears no fruit it will die, a slow painful death again and again until one day we won't believe anymore.

I truly believe that DRI is onto something big.  But don't puff it up and get families, and heaven help us, CHILDREN!? excited.  They need money to fund all of this, I get it.  I understand why it needed to be made into a big deal...I just think it could have been done more gently.  Like maybe, "We think we are on to something awesome, help us raise money for it!"  Not, "This is what we've been waiting for all our lives.  IT IS HERE!  IT IS HERE!  IT IS HERE!"

We are a fragile bunch, the DOC.  Sure we have strong cores, but our hearts bruise easily.

I hope that those with big things on the horizon handle us with a little more care in the future.  I've been in this game long enough not to get "too" excited about things.  But my heart aches for the newbies.  They are just beginning to strengthen their core.

Let's not break them before they have time to muscle up.

Ryan's Birthday Week

It's Ryan's birthday this coming Sunday, so today kicks of his Birthday Week! (That's how we roll in the Schuhmacher household.) So in honor of Ryan's week, I made this video that I have already watched a couple thousand times, and will surely watch a couple thousand more. Happy Birthday week to my love...

PS: If you are getting this on email, you'll need to click over to my blog HERE to watch it.