Proof

I’m proof that there is more to us than blood, tissue and bone.  There is a spiritual organism that lives in each of us, and right now mine is mourning.

Today, May 1, 2013, is Ryan and My 20^th Wedding anniversary.

Physically…mentally…with my swelly brain, I know that today is the same as every other day.  I will work.  I will take care of my children.  The sun will rise and it will set.  I’m a level person for sure.  Why would this one day put me in a tail spin?  Ryan has been gone for 8 months now.  Exactly 8 months tomorrow, actually.  Why would this week be any harder?
 

But there is something deeper inside me that is falling apart.  Something my brain can’t put to rest.  I’m fragile this week.  And it is clear that this tantrum my spirit is having is completely out of my mortal hands.

This past week especially has brought many sleepless nights.  Two nights ago was the worst.  It was 2am.  I was wide awake, and my spirit directed me to start searching.  I felt like a puppet as my legs and arms moved away from the bed without rhyme or reason.   I simply knew I must “look.”

I searched through drawers.  Nothing.  What was I looking for?  I didn’t know…but innately I did know that what I needed to find wasn’t there.

Then I moved to the closet.  One by one, I opened boxes.  One by one I searched through file after file.  My eyes looked at the clock.  My body said, “Meri!  Go to bed!”  But my spirit said, “Keep going.”  So I continued on. Within the silence of the night I felt an eerie serenity.  Within the pounding of my heart I felt an unfailing purpose.  I finally got to a pile of papers that I had set aside for shredding.  I went through the pile carefully, methodically.  Looking.  I knew I must look.  And as I lifted the last piece of paper off the floor…I saw it.

A picture of Ryan and me shortly after my 20^th birthday.  Shortly before our wedding day.

There it was, wedged between the floorboard and the back of the filing cabinet.

And in an instant my body was released from its search, immediately free to go back to bed.  I laid in bed staring at the picture, feeling my inner spiritual organism long for its other half.  It wept for her companion.  It sang with love for the faces on the picture staring back at her.  The memory of that rainy day...the laughter as they walked in the door, and the quick smile for the Polaroid Camera my mother held in her hand...it was all crystal clear.

But that’s the end of the story.

The beginning of the story started a week ago when I found this picture of Ryan and I on the garage floor. How it got there, I have no idea.  But it was right by my foot as I stepped out of the car one night.

This picture is from our honeymoon.  20 years ago today.  I can’t stop staring at it.

I put this picture on facebook and got comment after comment that Ryan had left it there for me.

That night I prayed to know if this was true…or simply a wild fantasy I wished to be so.

A couple days later the answer to my prayer came in the form of a facebook message sent from another D Mom.  A D Mom who lives across the country from me.  A D Mom I barely know, but summoned the courage to tell me she had a vivid dream, and a strong prompting at church the next day to share the dream with me.

All she could tell me was she knew without a shadow of a doubt that “Ryan left that picture for me.”  She knew she needed to tell me that.

I won’t go into detail…but she isn’t the first person to have a vivid dream and then share it with me about Ryan.  Each person knew there was a chance I would think they were crazy, but fought off the worry to share with me anyway.  Each person’s story has been an answer to a specific prayer.

I don’t have all the answers about the afterlife, but I know that Ryan is still around.  I know I was supposed to find these pictures, and the message is very clear to me…or to my spirit anyway.  He’s telling me we’ll be together again…in our prime.  Cured from the worries, and disease of the world.

Until then, my body will remain a slave to the mourning of my spirit.  And even though I don’t understand why I cry sometimes, I will embrace it.  Because I know our love is deeper than this mortal state.

Our love lives on.

Ryan and I never said goodbye on the phone.  In the beginning of our marriage we would say, “I love you.”  But within a few years it simply morphed into, “Love.”

Happy 20^th Anniversary, my love.

Until we meet again...  “Love.”

Meter Madness

We have 600 blood sugar monitors in our house.

 

Alright.  Maybe I'm exaggerating.  We only have about 200...

 

Although they come in different shapes and sizes...almost all of them are One Touch meters.  Because that's what our insurance says we can use.

 

One would think.  "Meri has 200 meters.  She is set."
 

 

But nope...

It is never that easy.

 

Because guess what.  Meters run on batteries.  Fancy, round, pain in the bahookie expensive batteries.

 

And right now at this very moment, our family...the family with three  children with Type 1 Diabetes...THIS family...we only have TWO meters in the house that are functioning.

 

My purse meter...

And the station meter...

And both of their life spans are iffy right now.

One has the battery light blinking, and the other is so close to death it is phantoming in and out. 

Each reading is a victory. 

But battery death in eminent.
 

 

With any luck we'll successfully continue to run on 1% capacity until the weekend when I can hunt down these batteries and buy the store out.

 

Until then I'll keep holding my breath. 

Or not.

A disease by any other name, still stinks.

"Diabetes."  I admit.  I'm not a fan of the name.  I'm even going to go ahead and say it is a stupid name.  It doesn't roll off the tongue, or sound serious at all.  Also, it has four syllables.  It's madness!

I'm pretty sure if Diabetes was in school, it would be teased about its name.  ALLTHETIME.

So if I had the opportunity to change the name of diabetes, would I?

If I could go back in time, yes, I would.  But my time machine is broke, so that isn't an option.

Right now, April 2013?  (With no time machine,) I really feel like that ship has sailed.

There is an online petition floating around the interwebz that has been causing all sorts of debate within the Diabetes Online Community.  Two mothers are trying to get enough signatures to change the name of Type 1 Diabetes.  I believe their intent is specifically driven to avoid confusion with Type 2 rather than my simple argument of "stupid sounding."  I get where they are coming from.  They are tired of convincing people they didn't wean their children off breast milk by using pixie sticks.  Honestly, I get it.

But.

How do I feel about it now?

I'm glad you asked...

Type 1 Diabetes isn't confused with Type 2 Diabetes because people think it is the same thing.  They are confused because most of the free world doesn't even know that Type 1 exists.  People with Type 1 only make up about  5% of the entire diabetes population.   They are confused because the media lumps them all together and does not distinguish between the two. (Again, not because they think they are the same thing...but because they don't know about us.  At least that's my theory.  And in my opinion...my really good theory.)  Sounds simple enough...except it isn't.  To make matters worse, there is a medical community out there spouting misconceptions about both types.  There are doctors, and community leaders, and newspaper headlines screaming all the live long day that "DIABETES CAN BE REVERSED!  CURED!  JUST LOSE WEIGHT AND EAT LESS!"  Seriously.  They say it. 

Readers Digest had an entire issue with the headline flashing, "REVERSE DIABETES FOREVER!"  It was full of stories from doctors who testify if you lose weight, you'll lose diabetes.  If there are doctors saying it, and magazines saying it, and Dr. Oz saying it...and they lump it all together and say, "Diabetes this," and "Diabetes that," then what is the public to believe?

I know for a fact that you cannot cure diabetes.  Type 1 or Type 2.  Some people with Type 2 Diabetes can lose weight, change their diet and can go off medication.  But does that mean their diabetes is gone?  NO!!  It means diabetes is waiting.  Waiting for that weight to come back.  Waiting for its chance to spring back.  Sometimes it comes back, even if you've kept the weight off.  Many people can lose the weight but not get off their medications.  My father in law was overweight and had a horrendous diet.  He was diagnosed with Type 2.  Years later, he is now underweight, more active than he's ever been AND eats like a bird.  Still on meds.  His story is not unique.  He is part of a large population of skinny people who have Type 2 Diabetes.  There are a ton more factors that go into the risk factors for diabetes.  "I" know that.  And I'm just a stupid mom in a California suburb.  How come I get it and they don't?

There are no easy solutions.

But the media would have us believe otherwise.  And prominent medical professionals that don't know diabetes Type 1 or Type 2 are yakking their brains out about things they don't even know.  Most of these doctors aren't endocrinologists.  They don't work specifically with the Diabetes population.  They just figure fat people=Diabetes.

Am I angry that when people hear the word "diabetes" they think my boys got it because I threw sugar down their throats?  Yes.  Do I blame the people?  No.  They are just mirroring what they have been told by the media...and their doctors. 

By changing the name we are only clipping at the branches.  The weed's roots remain.  When is there going to be a summit to finally get down to the root of the problem?  Find out the different factors that contribute to both Type 1 and Type 2?  Let's summit this out people!  Is that too difficult? 

It may be.

Diabetes is a complicated disease.  It's stupid name doesn't communicate that well, but changing the name won't change the fact that people with Type 1 and Type 2 have a serious issues with insulin.  And because of that, we have a lot of things in common.  Complications from high blood sugars being on the top of the list.  But what if I told you that they are finding that there is an autoimmune factor to Type 2 as well?  New information is being siphoned through every day...but the word isn't getting out.  Scientists still do not know for sure what causes Type 1 or even exactly everything that contributes to Type 2.  They like to throw out a lot of blame, to the parents, to the environment, but really...any avenue they look down will give them reason to believe.  If I told you that going to school triggered Type 1, trust me, you could find a lot of data to concur.  A doctor at UCSF Stanford Medical Center told me that if they look anywhere for a link...they will find it.  It is a hopeless round.

If the scientific community is confused about Type 1 and Type 2, the greater worldwide public will be confused too.

And that isn't "the public's" fault.

How can it be?  These diseases are uber confusing.  But are we as a community helping the cause, or fracturing it instead?

As parents of Type 1 Children, we are so quick to tell people our kids are not Type 2, we end up throwing the Type 2 Community under the bus which only leads to facilitating the stereotype we are so adamant to debunk.

There just isn't an easy solution to all of this.  As long as know-it-all doctors, and full-of-them-self talk show hosts say diabetes exists ONLY because the nation is fat...answers will not come.  When will the scientific community stand up for us and say, "Wait a minute.  This is all more complicated then we think!" If they do, will the world will start listening?

But if we simply change the name...all the work we've put in is going to be gone. 

And who's to say that the new name won't be just as stupid.

My vote is, let's put our attention towards the media...and the medical community.  If kids are still dying from misdiagnosis from Type 1 Diabetes or "Juvenile" Diabetes ...a name that has been around forever...(and they are!) then how many more will die from a new named disease that nobody knows about?  To be honest...a few years ago I might have written up this same petition too.  I don't fault these mothers for doing it, I completely understand.  But if the name change did happen, I'm pretty sure it would go like this.  "My son has ........"  "What is .......?"  "Well it used to be called Type 1 Diabetes, or juvenile diabetes, but...." (One hour later.)  Maybe I'm just lazy.  Or maybe I'm a little bit angry that we are letting the world shame us out of this name.  We have nothing to be ashamed of.

Deep down though, I really think that education is the real issue.   Not the name.

Well...okay.  Kinda' the name.  But a disease by any other name is just as crappy. 

Pa-TATE-oh...Pa-TOT-oh.  Either way...it's still a potato. 

Clarity via the hard things.

I wrote this post a few years ago.  I read it tonight and I cried.  So I'm sharing again because it's the simple, littler things that make life worth all the trouble.  It's especially true for me now...

There are moments in everyone’s lives that define them. Moments that move us to a sacred place…a place away from the world’s manipulations of what is supposed to be important.

I think my children’s diagnoses were three of those moments.

But since those three fateful days when my worlds as I knew them were knocked off their axis, there have been an armful of moments that just as suddenly, jarred me to my very core. Like aftershocks in the earthquake of diagnoses. In these instances my true priorities were made clear. Most of these moments lasted just seconds, but their grasping influences left imprints that forever changed the way I look at my life.

Last week I had one of those moments.

Since we were kicked out of our house for termite fumigation, we were lucky enough to house sit for my in-laws while they were on vacation. My husband had to leave unusually early for work one morning and since it was just an hour after the normal nighttime blood sugar check, he offered to check the boys before he left. (Uninterrupted sleep for the momma! Score!)

The next morning I started breakfast and was happy to see that B had finally gotten a good night sleep. It was almost nine and he was still lying peacefully in his bed. My husband called and we chatted about his morning as I scrambled the eggs. A couple minutes into the conversation I mentioned that B was still sleeping like an angel…

“Crap!”

“Crap what?” I said.

“Crap, I forgot to check the boys before I left.”

THUD.

(That was the sound of my heart dropping into my stomach.)

B had been going low almost every night that week.

…And he hadn’t been checked since 11:00pm.

…And he was still sleeping. (An hour and a half later than usual.)

I hung up on my husband, grabbed the blood sugar monitor and ran to the room. I stopped in the doorway to listen…to watch. Frozen…my mind like an ocean, the waves of emotion rolling…willing him to move with my stare.

Please move. Please breathe. Cough! Twitch! Roll over! SOMETHING!

There was nothing. He was motionless.

I walked slowly over to him, my eyes fixed on the blankets twisted around him. I sat beside him and brushed his hair away from his forehead.

It was that second. That one second. I was facing my worse fear.

But his forehead was warm. That was good, right? I don’t know. In that second his warm forehead was like angels singing…the warmth swept over my body.

And then he wrinkled his nose. Thank the good Lord above.

I checked his sugar and found him to be 52. I ran to the cupboard for some juice. And as I ran back I was hit by another thought.

What if he couldn’t drink this juice?

What if?

I gently touched the straw to his lips and he immediately puckered in his sleep…resolutely sipping.

THAT was one of those moments. The kind of moment that we see far too many times. The kind of moment that explains why I have so many gray hairs. Why must we stare our children’s mortality in the face on a daily basis? What purpose can this serve?

I can't say there is a purpose, but I can say I honestly feel that positives can come out of these difficult times. Without these kinds of moments...the world wouldn't have nearly the amount of good that it has. Once you get a glimpse out the window of what could be…the sadness of losing a child, a friend or a loved one…or once you see firsthand another human being suffer…you are changed…period. Priorities are changed, views are changed, what seemed important before just isn’t important anymore.

I hate that bad things have to happen to good people. But I firmly believe that bad things MAKE good people…the refiners fire molds us into compassionate, empathetic, appreciative human beings. Well, it does this for most people. For some people the fire doesn’t make them better, but bitter instead.

I’m not perfect people. I have flaws for days...but I do appreciate what I have. Every little thing.

I APPRECIATE the fact that my 8 year old child can play soccer.

I APPRECIATE the fact that my son is right now at scout camp…LIVING! Having an adventure without his mother hovering over him!

I APPRECIATE the fact that my oldest son can drink orange juice whenever he wants.

I APPRECIATE the fact that my 6 year pricked his finger 14 times last Friday, sporting a broad smile EVERY time!

I appreciate the little things. Because little things around here, are HUGE! Hugely. Wonderful!! And just when I am about to get absorbed in my selfish ways...WHOA! One of these moments happen and I realize I am DANG lucky to have what I do. I am completely blessed!

God bless those awful, emotional tsunami-like moments. They suck beyond measure, but they clarify what some don’t get the opportunity to see…life is too short to sweat the small stuff. The small stuff needs to be EMBRACED and celebrated!

Diabetes does that for me. It forces me to appreciate the small things, and embrace the wonderfulness of each little blessing.

When we are old…when we are ill…when life hands us crap… it is all of the little things that get us through.

A warm hug.

A sunny day.

A laughing child.

All the things money cannot buy.

The sun rising.  The sun setting.

I know at night, when you walk through the house to your child’s bedroom, and you see him or her sleeping…dreaming…it is that moment that brings the clarity of what is really important.

Especially when you take that second to pause…and wait for them to breathe.

I die a little.

When something affects my boys in a negative way...I die a little.  All the heartache they have felt, all the physical trials they have been through, all the worry that their little hearts endure, all of that kills me little by little.   So much so, I have to wonder if there isn't an angel assigned specifically to keep my heart pumping day after day.

Maybe that is why I'm so close to God?  Each time I die a bit, my spirit draws closer to Him and the home where my soul will one day find respite from the storm.

Last week I got the results back to the boys lab work.  Everything was perfect, except...

Except J's urine test came back positive with protein.

The nurse who called me was as kind as she could be about it and insisted I not worry.

Why was she so concerned I would worry? 

"What does it mean, having protein in the urine?" I asked.

"It means the kidneys may be shutting down."  She responded.

At that moment.  I died a little.

"But it could easily be a false positive.  We will retest, and will see what happens." 

Those words didn't mean anything.  I am a mother, and as such the worry had made its way into my soul instantaneously.  All I could do was feel the effects of the death on my heart, and carry on.

I waited a few days to have him retest.  I wanted him hydrated, and well rested beforehand.

But when I went to the lab to drop off his sample, the lady said the orders were deleted.  Which is really weird because my nurse is always very thorough.  When I called my nurse she was equally puzzled but called the lab and told them to run the test immediately.  That same day I called to get a referral for M to get his wisdom teeth out.  The person on the other end of the line said, "I'm sorry.  His dental insurance was canceled as of April 1st.  You better call your health care company to find out the problem."

My stomach was uneasy.  Could these two incidences have a common thread?  I called.  And was told that our health insurance was canceled too.

Stab Stab Stab to my heart.  Death.  It hurts.

We just changed to another health plan.  One with my name as the subscriber, rather than Ryan's.  I called twice to confirm the change. I was super anal about it because my biggest fear other than complications from diabetes, is my children losing their health insurance.

And there I was, in the same time frame facing the possibility of kidney failure, and the fact that my boys were not insured.

It was 48 hours of me dying.  Worry has a way of making you feel like a zombie...only half living.  I guess when you heart is wasting away, that can happen.  I sat in my car in front of my house today looking at the front door.  The song on the radio was slow and sad.  I reflected on the events of the past week and felt the death freely eat.  Why does this life have to be so hard?  I heard the phrase this weekend, "When you're down to nothing, God is up to something."  What would he be up to?  Or am I forgotten and left to the devices of a cruel world? 

I said a simple prayer.  I asked for relief.

As I walked into the house I marveled at the fact that I could still function under the heaviness of my worry.  One foot went in front of the other.  I moved.  I got into the house.  That seemed like a miracle all on its own.

And in the next 60 seconds I listened to a message on my answering machine saying that J's test results came back perfect and all was well, and I received a phone call from my advocate at the insurance company telling me that mountains were moved and our insurance was already reinstated and active.

I had to sit down.  I let the silent tears wash away all of the death, and felt my body heal from the damage of the week previous.

And then I picked up my boys from school and their hugs, and their smiles completed the rebirth.  I was whole again.  My heart sang with love for my boys, and praise to a Heavenly Father who knows when I've reached my limit.

We need to sail through the storms to appreciate the sun.  And let me tell you, I don't take the sun for granted.

In fact I'll be basking in it  for the remainder of this week...continuing on as long as life will allow.

Sometimes.

Sometimes at night, when the alarm goes off…I have a mini fit. I thrash my legs and moan like an 8 year old tasked to do the stupidest of chores. I am overcome with exhaustion. I roll out of bed walking back-bent-arms-hanging, channeling all my anger to the Legos on the floor, wondering when, if ever, I will get a good night’s sleep. Once I get to the boys though, my heart usually softens. Their sweet faces calm my shaking hands and my selfishness turns to concern as I check each boy and assess their situation. But when I get back to my bed, I fall in like a dead body; face first…KERPLAT…on to my pillow. Wondering if I’ll be able to fall back to sleep, angry at the exhaustion that has taken over my body. Sometimes.

But most of the time, I just hop out of bed and check. No biggie. I’m not angry, or tired, or anything. I do the deed and go back to bed. Most of the time it is just a simple correction or a little banana or juice to get things back to where they need to be. I climb back into bed and fall asleep before my head hits the pillow. Done and done.

Sometimes I question myself. I’ll give the boys breakfast insulin and send them to school wondering if they will be ok today. Because sometimes I don’t do what the pump tells me to do. Sometimes I go rogue. I know that J has track, so I’ll scale back his insulin. I know that B has called me the last few days with higher numbers, so I give him a bit extra. I know that L has needed an extra snack for a week, so I give him less insulin. So I’m guessing. And sometimes when I guess…my entire body fills with worry sand, and I feel like I am 200 pounds heavier. On these days I feel clumsier in both mind and body, and I can’t think straight. And I pretend that I’m not worrying…I tell myself over and over and over that they will be ok. Sometimes.


But most of the time, I give insulin and I don’t worry. We have done this everyday for forever, and everything will be ok. And if it is not ok, then there was nothing more I could do. Most of the time I am at peace with my decisions. I know that my guesses are educated guesses. I live and breathe diabetes. I am not perfect…but I am capable. Most of the time. Easy peasy lemon squeezy.

Sometimes, I’ll look at a pile of bloody test strips on the dresser, (aftermath from a long night,) and I get sick to my stomach. It is the grizzly reality of our life. Sometimes, there can be 20 test strips lying on the boy’s dresser from the evening before and a couple checks through the night. I pick each one up to throw in the garbage. It hurts my heart as some of them stick to the dresser. Tears come as I wonder if this will always be our reality. Wondering if there will ever be a cure. The image throws me…and validates all my anger towards this disease. I think of their callused fingers and I want to roar like a mother lion that is protecting her young. Sometimes.

But most of the time, I’ll clean up the strips and disinfect the area like I always do and it is the most normal of things. It is not big deal. Test strips are nothing new. Hell…they are EVERYWHERE. Normally the strips go straight to the garbage or in a cup I keep next to their supplies. I am thankful for being able to test. This instrument is fairly new in this world. How blessed am I to know what to do at any time of day just with a poke of the finger? I thank the Lord for that monitor. Most of the time.

Sometimes I let my brain go to that dark place. The place where the seriousness of this disease is magnified and made uber clear to every one of my mommy senses. Sometimes, like last week, I hear the stories of children dying in their sleep from Diabetes and I have what I call, “a silent freak out.” I don’t talk about it. I pretend I am not worrying about it. But it is there in my mind. So when something else comes up that is frustrating, I lose it. I lose it over the littlest of things. Not because of the little thing, but because of this secret worry that has burrowed like a mole deep into my head and is planning to hibernate there for the winter. There is this background worry that affects every aspect of my life. It defines me, it puts me on edge. And at these times, I hate diabetes. Sometimes.


But most of the time, I am grateful. I see the blessings right in front of me. They are vibrant, smart, and amazing. They can do anything. Nothing can stop them from achieving their dreams…not even diabetes. I am grateful that they are alive…that they don’t live their lives in a hospital. That diabetes has made them stronger, more empathetic people. What doesn’t kill us makes us stronger. We are a close, united family partly to do with diabetes. We are blessed daily with technology that makes this disease manageable. We are a family that loves each other, and when it all comes down to it…isn’t that all that is important?

Yes, sometimes I am an emotional wreck. Thankfully, most of the time…I am Ok. That is why I am the Jekyll and Hyde of the blogging world. One minute I am preaching how manageable diabetes is, and that it gets easier, and that newly diagnosed families will adjust to the craziness of it all…and the next minute I am heartbroken…scared and unsure of myself.

“Most of the time” I am Ok. And the “sometimes” that I am not…well…those times don’t last long. Those sometimes moments are the reality of what this disease and life itself dishes out. Diabetes isn’t going anywhere anytime soon. I accept that. And I will forever keep with me the knowledge that through the rain clouds the sun is always there. We just need to be patient…the sun will make itself known eventually. Sure, some storms last longer than others. But that is with every aspect of life.

When we were new to this life…when J was just a baby… things were different. The bad times seemed like they were most of the time. And it seems that only sometimes we got a taste of any kind of normalcy. As time passed…the two switched places. I often tell newly diagnosed families that things will get easier. It's too bad that easier doesn’t mean easy…but it does mean life will be better than it is now. So much better that your life, and your soul will feel transformed by this new kind of normal. You WILL feel alive again.

I get that normalcy most of the time. And the sometimes that I don't...well, I blog. And it makes me feel better.


(I reposted this for several reasons, but mostly because I wanted to point out my last post was a snapshot of my "sometimes."  I have my moments when I question myself, and when I do it helps me to write it out so I can better ponder my course.  "Most of the time" I'm confident that all will be well.  My faith is strong.  My hope remains bright and true.)

Surrounded.

Diabetes has been my companion for almost 15 years now. 

I'm used to it.  I'm well versed in the language.  I understand the storm, as I've sat in the eye of it many times and survived.

But lately, it seems the weight has shifted.  Like when you hold a baby, or in my case triplets, and they arch their backs and you struggle to keep them from dropping on the floor.   

I believe B is in the beginning stages of puberty.  His insulin needs are increasing rapidly, and I'm feeling guilt with every off number.

I've preached it before:  The numbers are a map.  Don't take them personally.

But wherever I am, or for whatever reason, those numbers are hurting me right now. 

L called from school with a 40 yesterday.  He didn't have insulin until dinner that night, other than his basal, and he was still low all day.  No kidding, sunny days do that to the kid.  Really?  Weather changes everything?  What kind of whacked out disease is this?

I have a responsibility to the boys to keep their numbers in a good place without making diabetes the center of their lives.  HA!  Read that last sentence again.  It seems so completely impossible when diabetes is present in every facet of their day.  I'm trying to wrap my brain around the fact that I keep track of three pancreases, while they only (only? HA!) need to worry about one...their own.  And that maybe, they aren't as overwhelmed with it as I am. 

I really hope they aren't.

Without Ryan, I am completely 100% responsible for the well being of my boys.  Physically and mentally.  Do you have any idea the enormity of that responsibility?

What if I'm fricking it all up?

How do I know if I'm doing it right?  Is there a right?  There is a wrong way, so there has to be a right way, right?

Ryan and I would bounce ideas off each other.  I ask people for advice and they have none to give.  I have to make decisions, a lot of big decisions, diabetes and otherwise, all by myself.  I can't convey how hard that is.  Sure, over the years I was probably the decision maker in most of the diabetic quandaries laid before us.  But it was so nice to have that voice gently cheering me on...affirming that I'm going in the right direction.

With all the worry I've felt internally, (most of which I can't say is completely justified, and some of which is totally justified,) I've been trying to keep my thoughts of Ryan on the back burner.  I've been turning off the sad songs on the radio, and when I think of him I try to force a smile and tell myself that I can grieve later.  I let a tear or two fall, but I don't allow myself to indulge in a full on pity-fest.  For the most part it's been working.  I've been holding it together the past couple weeks like a champ.  I've let the feelings flow for so many months, (the month of March it wasn't so much flow-like as fire-hose-like,) there needs to be some respite from it all, right?  And if I have to force it...so be it.

But then the guilt comes.

Guilt that I'm suppressing my feelings.

Guilt that I'm letting the boys down.

Guilt that the numbers aren't better.

Guilt that I'm not getting the boys the right kind of help to get through this.

Guilt that the boys can see through my warrior facade, and see I'm guessing my way through it all.  Guessing my way through things that will affect the rest of their lives.

So much guilt, and worry.

I love my boys so much.  They need a happy mom.  I want to be happy.  I try so hard to be happy.

But diabetes arches it's back, and grief throws a tantrum and I struggle to keep hold of this world I've been thrown into.  Slipping up means my boys suffer.  My boys.  The people that I treasure more than my own life.

So yeah, obviously, it's weighing on me.  For so long I was able to let it go.  For so long my motto was, "You can't do better than your best."  And it's true!  Dang it.  I know it is true!

But my circumstance right now won't let me see through those glasses.  I'm sure in time I'll get back where I need to be.  (Next week?  Next month?  Next year?)  But in the meantime, how do I sustain my buoyancy with the waves of guilt crashing into me, surrounding me in every direction?  Especially when there is nothing to distract me from it all.  I'm looking at this responsibility square in the eye, day in and day out.

How do I believe I'm good enough, alone?  Man.  That word just screams at me.  Alone.  I have family.  I have friends.  I know I'm not alone.  But you can be not alone and still feel lonely.  I'm a living testament of that.

Onward.

beep BEEP beep

Conversation that took place yesterday, whilst I was on one end of the house, and the kids were on the other...

Meri: "B.  How much insulin do you have left in your pump?"

B: "Me?  Let me check."

L: "I'll check too."

B: "I have 121 units."

L: "Mom.  I have low reservoir!"

Meri: "How many units do you have left?"

L: "Hmmm.  I can't seem to find any."

Meri: "You know where to look.  Go to the home screen and arrow down."

L: "No.  I'm there.  It just says dot dot dot.  No number."

So he's out of insulin.  Wunderbar.   

He disconnects.  I grab the pump, and a new pump setup is on his body in less than 5 minutes.  (It would have been two, but I had to grab a freshie from the fridge and warm it up a bit first.)

Which begs the question:

"L, didn't you hear the alarm?"

"Nope."

Thinking back, we only ever hear alarms in the car.  That is when everyone is sitting and fairly quiet.  Around the house I rarely, if ever hear alarms.  One would think that having the pump in their pocket would lend itself to hearing such an alarm.  But when you are a 9, or 11 year old boy?  Not so much.

Which begs another question:

Why don't sirens go off when the reservoir is empty?  Shouldn't there be infrared lights strobing around the room and a deafening sharp horn sound emanating from speakers in the pump?  Having no insulin in the body is dangerous, and a little "beep BEEP beep" is supposed to be all the warning we need? I heard a car alarm go off a couple days ago in the Target parking lot.  I looked at my sister in law and said, "There.  THAT is what I want to happen when the pump is out of insulin."

Sure.  Remembering to change sets every three days isn't rocket science.  But when you have three boys, on three different set change schedules, it kinda is.

I call it "my swelly brain" for a reason.

I had the boys all on one schedule a few times.  It lasts a week.  Two at most.  A set loses out to a doorknob, or a slide at the park.  A unexplained high forces me to pull it.  A set sticker is loose and requires a new cannula insertion.  Someone uses more insulin than usual. There are a lot of variables.  Is it a cop out to say when I had one boy on a pump this was all a walk in the park?  (Memory wise anyway.)  Seriously, I used to walk into the endo's office and rattle off numbers from the last two weeks from memory.  I knew every pattern.  Every sensitivity.  Every ratio.  If you asked me what J's carb ratio is today...I couldn't even give you a wild guess.

Now the numbers backstroke throughout my brain causing havoc on everything I need to remember.  In shorthand: My brain is mush.

For a couple months we got in the habit of checking reservoirs after family prayer every night.  Somehow we got out of the habit.

I guess my only excuse is my swelly brain has a hard time finding important bits of information these days.  I hope one day my synapses will start firing again and I'll be able to sort things out better.

I can't blame it on alcohol.  I don't drink.  I can't blame it on drugs.  Surprisingly, I'm not on any. 

I guess I can only blame it on diabetes.  Ok...and maybe I've had a lot on my mind lately.

Lest I start receiving emails on the reality of sirens going off on insulin pumps.  I get it.  That isn't a reasonable option.  I haven't been eating glue.  I totally know.

But there has to be some middle ground.  My son got a "Battery test fail" alarm today.  Trust me...I heard that sucker from the other room.  Isn't an empty reservoir just as important?

Another idea might be having the pump text us regarding an impending low reservoir?  

But if that did happen, would the pump company have to pay residuals to Kim?

I guess we'll just have to file that under one of those things we may never know...along with the long asked question, if I do start eating glue...will the alarms get louder?

The bloody truth.

Just to be clear, I'm starting this post assuming that every one of you disposes of blood in a super sanitary, super proper manner. 

In public anyway.

But behind closed doors, or rather...within the city limits of friendly territory, we all know that there are a variety of ways to dispose of that extra glop on the finger after testing.  The bloods gotta go somewhere.

As those of us with Diabetic Lives can attest, blood loses its scariness-factor pretty fast after diagnosis.  We are numbed to the fact that these days, blood is supposed to be completely unsanitary.  When it is your own blood, or the blood of someone you created...it's really not that big of a deal.  Blood means life: end of story.

My boys are as different as the day is long.  They all use variety of methods to dispose of the extra blood on their finger, and none of them apologize for it.  Their blood. Their solutions.

Below please find a low budget, (OK, no budget,) clinical, (OK, non clinical,) analysis, (Ok, more like a swelly brained smattering,) of the personas attached to each method of said blood disposal...

I'm going to get all shock and awe here right off the bat: 

 

The vampire's solution to the blood is to simply lick the blood off the finger.  It is the fastest way of disposal, and doesn't require any pre-planning whatsoever.  There is no trace left behind, and the finger is left essentially looking clean.  It is a fast and a very legit way to deal with this.  I may or may not have one or two of these running around my house.

The next one is a little more subtle:

 

The sneak will wipe the blood someplace hidden, often using the inside of his or her pocket.  It isn't left out in the open and is a much more discreet way to dispose of the glop.  I mean, everyone puts their hands in their pockets, right?  Props go out for ingenuity...who looks at the inside of pants pockets for stains anyway?

Up next is the most socially acceptable:

 

The hygienist uses alcohol swabs, or Kleenex, or both, to dispose of the blood, and promptly disposes the aforementioned cloths in the garbage.  I assume this is the way we were all taught once discharged from the hospital.  I'm sure Ryan and I used to do things this way...for like the first week after our first diagnosis anyway.

Conversely:

 

The opportunist is probably the least accepted by society.  The opportunist simply wipes the blood on what is convenient at the time.  Maybe their shirt, or their mother's shirt, or the sheets on the bed.  The table maybe?  Nothing is off limits.  As long as the blood is off their finger, and on something else...their job is done.  My boys were all opportunists at one point.  As they have grown, they have moved onto other more discreet methods.

Up next:

 

A close relative to the opportunist, the free spirit doesn't give a damn about the glob of blood.  The free spirit simply lets it sit on the finger until it eventually disappears onto something else while going about their day as normal.  Blood found on a light switch?  Likely a free spirit was happening by.

I leave you with the last one, that I freely admit was my M.O. for many years.  I'm not afraid.  I'll tell the world.  Be sickened if you must, but I have a feeling those that are reading this will accept this method as a completely viable, valid one.  I have since given it up as my boys test their own blood sugars now.  Without further ado:

 

The magician simply rubs their fingers together until the blood disappears.  It works.  And I can vouch for the fact that it is certainly magical.  Where does the blood go?  It seriously disappears in thin air.

It seems every situation calls for its own disposal policy.   My boys can easily switch from one method of disposal  to another without missing a beat.

Even though I feel like I've covered all the bases, I can't help but wonder...what am I missing?

And if I am missing something...if there is another way...do I really want to know about it?  Or is it best I be left in the dark as the rest of the theoretical "muggle-like" society? 


I'm going to stew on that while I wipe down all our doorknobs.