Ruh Roh.........Hacker Alert

First I would like to apologize to all the people who receive emails automatically from, and the group of readers who check in to OUR Diabetic Life.  This is not the usual witty, well crafted, insightful post that generally comes from this blog.  Grammar? Whose the Hells needs Grammar? This is not even the person who writes the blog, it is her husband, Ryan.

I do have a swelly brain, not the original one but I do have pictures to prove mine.  In this post I will add some things I like……I like to call them “flairs.”  I may throw in one of these !!! Just to add a little spice. I even plan on posting a picture and adding a song.  Now don’t think I’m an amateur at this, I have my own blog! Oh ya, it’s called “Welcome to My World, a husband’s feeble attempt to enter his wife’s world in order to get closer to her.”  Started it a year and a half ago, I belted out 6 posts...believe me they were epic.

Now Meri has asked me in years past why I never comment or guest post or even read her blog.  She talks about other male bloggers and awesome observers like Fred Cunha, Manny Hernandez, and Mike Hoskins.  That’s when my blog idea came about, but I started thinking about all the pressure of having everyone know that I was Meri’s husband and my posts and comments be….. dare I say at times inappropriate or not politically correct. What also came to thought was I didn’t want to ride the coattails of my famous wife.  So conflicted, I thought of Emilio Estevez, he not wanting to ride his dad’s fame, changed his name.  So I came up with this idea of creating an alter ego, someone that wouldn’t be tied to Meri and she would know it was me……..I called him Enrique Ferrell (I was thinking of someone sexy, everyone name Enrique is sexy, and funny, Ferrell, cause I think Will Ferrell KILLS!) I know what you’re thinking………this guy is either making this up or he’s crazy………it’s the latter, this is a true story.  It’s CRAZY love.

OK so on to my list of things I want you, Meri to know, and a few things I want the blogosphere world to know.  I want you to know it tears me up inside that I’m putting you through this.  I also want you to know I thank God it’s me and not you.  I don’t think I could be as strong as you watching your soul mate go through this, you are MY hero!!!  I want you to know that is the most twisted 3 sentences I have ever put together, they contradict each other and almost don’t make sense.  I want you to know that “spoiling” you make me feel like I’m doing something of worth.  You are the most important person in my life and that’s where all my efforts should go.  I want you to know that I don’t “think” you’re beautiful, you light up my life and any room you walk into.  I smile at you after a disagreement because you are so damn cute and it’s not worth a second of our time to be cross with each other.  I want you to know that as years of our marriage continue to grow they only get sweeter.  I can’t believe how blessed we are. I give you all the credit for the boys, they are so awesome. So much better than I was and that’s on you.  Without you I would still be stuck in the bakery, thank you for believing and seeing something in me I could have never comprehended on my own.  We have been married 6941 days and I’ve loved you every single one.  I want to add something that will “B LOW YOUR MIND“ (in the words of Jack Black,) but I tell you everything :P   I want your friends to know I appreciate all of you and the support, prayers, and love we receive from you each day. We feel these physically every day.  I will dedicate hours at Friends for Life just for hugs (I’m a hugger). I had a hard time realizing you all were real people but did get that realization before all chaos came into our life.  I see the support Meri gives and takes and it’s a beautiful thing.  I want you to know my family and I will make every effort to pay forward all the acts of kindness offered to our family.

Meri you are my best friend and I love you with all my heart and I know you feel the same way. I look so forward to a bright future walking hand in hand in love forever and always.

I said I’d post a picture and a video…..I lied. Just a video if I can get it on :) I think this song was written for Meri and I..

http://www.youtube.com/watch?v=pG1pG47XStA&feature=player_detailpage
 
 
Ryan

Ryan, I want you to know something...

Ryan reads my blog.

He subscribes to it and receives emails on an account that I thought he never visited.  (The other day when he said, "Run, Ryan Run!" as he looked at me sheepishly with one eyebrow raised and a smirk, I realized this wasn't the case.  He reads every post.)

Hi Babe!

So today in honor of our nineteenth anniversary, I thought I'd write him a little note, spoofing off another blog/love letter I sent to all of you a year or two ago...

Dear Ryan,

I want you to know something...

I want you to know that when you tell me you love me,
I know that you mean it.  I know that you mean it forever.

I want you to know that I've loved you from the first day I saw you in Mike's window.

I want you to know that I fully realize how lucky I am to have you.

I want you to know that I KNOW you are my greatest blessing.

I want you to know that I'm proud of every day of our history.

I want you to know that when you smile at me after a disagreement, really...everything is made better instantly.

I want you to know that after years of you taking care of me...spoiling me...I'm glad to take care of you.  You've done so much more for me than I've ever done, or will do, for you.

I want you to know that I LOVE that you loved picking up the boys from school.  You are a great father, and I know it meant a lot to them.

I want you to know that you will be able to pick them up again. 

You make the best breakfasts.  I don't take them for granted.

I want you to know that even though the steroids make you look different on the outside, you are still my Ryan on the inside, and still every bit the man I married...plus every bit the man I am madly in love with.

Your smiling eyes and bear hugs are two of the things I love most...but you know that.

I want you to know I wouldn't take back one day of our life together.  I look back and don't see any bad times.  I see hard times.  Times when we had babies, and diagnoses, and times when working 15 hour days was normal for you.  Those hard times have brought our love to where it is today.  It was all SO worth it.

I want you to know I want to be better, I try to be better...for you, because of you.

I want you to know that this is just a bump in the road.  We can do this.  You are the strongest most wonderful person I know.  Don't be hard on yourself.  Fighting cancer is HARD...and exhausting.

You can do this!  I want you to know I truly believe that.

I want you to know I love you more every day...still.  It seems impossible that I could love you more tomorrow than today, but experience tells me I will.

Thank you for loving me Ryan....for seeing past all my imperfections.  Thank you for telling me every day that you love me.  Thank you for thinking I am beautiful.  Thank you for nineteen years, and thank you for fighting for nineteen more.

I want you to know you're my hero.

Forever yours,

Letting out the belt loop on my brain

Here's some shockaprising news:

I was up worrying all last night.

I did the 2:00am check and didn't go back to sleep. 
('Cause nighttime is the best time to worry...you totally know it.)

You probably think I was up worrying about my sweet husband
and all of the scans and appointments he has today.

That would totally make sense. 

But no.

I was worrying about my 10 year old son and the epic field trip he is going on today.

I'm sure when the fourth grade teachers got together they were over the moon that they were going to take these kids a few hours away to Old Sacramento and let them experience the rich history of California.  I'm sure they spoke of all the educational applications within the trip, and the advantage of seeing history in action.

They are good teachers.  I'm sure they talked about all of that.

But what I'm sure they didn't do, was talk about B, and my capacity to handle the worry associated with this trip.  Not that they should have discussed such things...but I'm selfish, so I'm going there.

If they did discuss B and my brain, I'm sure they would have come to the obvious revelation that Meri has a lot on her plate and doesn't need the extra worry of her son leaving on an EXTENDED day, 8:30am to 6:00pm field trip.  (And yes, I do realize that this field trip has probably been planned for months and months.  But it was nighttime, and nothing makes sense in the nighttime, remember?)

Over the years my brain has been muscled up with worry.  It can hold a lot of it, that's for sure.  It was many years of conditioning and adding bits of worry day after day.  My ability to worry is quite impressive, my swelly brain is living proof of that.

But I'm at capacity people.  A hint more of worry and I might blow.

So I spent the night putting out fires in my head and quieting the tempests of my swelly brain with meal plans and diabetes supply precautions.

He's gone on field trips before.  B is a super capable kid.  B's teacher is on it, he is a great guy. 

But factor in the nighttime crazies, a mother who's brain is in flux, and my uncanny ability to worry about such things little things as having enough mayonnaise in the fridge and such big things as my husband's scan results ...well, you get the picture...no sleep.

Lucky for me the morning sunrise brings hope and a new day. 

Though, as wonderful as that hope is...I'm pretty sure I'm going to spend this day looking forward to the sunset, when my family will all be together again.

Because being together as a family is even cooler than learning about this great state we live in.

Family trumps field trips.

B may not know that yet.  But one day when he has his own littles, he definitely will.

And as for my brain?  Well, it has another hole in its belt loop I am sure.  It always finds a way to cope...and  since Ryan's friend offered last minute to drive Ryan around this morning, I think that coping will come in the form of scrubbing my bathroom.  (Or a pedicure...Terra?  Call me!)

Sharing A1C's? It's complicated.

I read a great post over at The 'Mine today about A1C's andthe efficacy of sharing them.  I began a comment on their blog and after the second paragraph realized I should probably take it over here.

What is an A1C?  Ehow.com says this:  Hemoglobin A1C is the amount of the protein hemoglobin that has combined with glucose in a person's body. Diabetics test their hemoglobin A1C levels to monitor the average amount of glycosylated hemoglobin (glucose attached to hemoglobin) that has been in their blood over a two- to three-month period.

Basically, the A1C is thought to give you an average blood sugar number from the past three months or so.  It is considered in wider circles to be, "The diabetic's report card." 

Or in my case, "The mommy report card."

The thing about an A1C is you can get a number a couple ways:

By having sugars go up and down in wide swings.

Or by having them vary in smaller swings up and down.

Both can yield the same result.  Both have the same average blood sugar number.  Both have their own story.

One can also achieve a certain A1C from being low most of the time, or by being high most of the time.

I think that is the most important thing to note here:  There is a story behind every A1C number. 

So is it a good idea to share said number without sharing the story too?  Unfortunately, I think there is no hard and fast answer to that one.

There are the amazing A1C's.  (That number varies according to who you are and where you are in your life.)  If one receives the news of an amazing A1C, or even a better than expected A1C...doesn't one want to share this information with the world?  Can we fault them for wanting to?  Absolutely not, but the problem lies behind the story.  The way to that amazing A1C could have been reached in four different ways.  1) They are obsessive about blood sugars and check themselves or their child every hour on the hour.  Their life is completely absorbed in numbers and perfect A1C's.  2)  They have balance.  They or their child is not growing.  The numbers are falling into place like a magic puzzle.  There aren't too many lows, there aren't too many highs.  Nirvana.  3)  They are CONSTANTLY battling lows and spend their life feeding them.  4) Luck. Divine intervention.

Now writing down that your child has an A1C in the 5's or 6's  can get you the adulation you deserve, but it can also give many people the impression that this should be easily attainable.  "If this family can do it, why can't we?"  The fact is every person and child is different.  Every person reacts differently to food.  Every person reacts differently to insulin.  Why does my son B have the higher A1C of all my boys EVERY SINGLE DANG TIME?????  He has the same brilliant doctors, he has the same diet.  He has the same mother telling him what to do.  He is my most conscientious diabetic.  Why must he always be higher?

Because we are not the same.

A1C's.  Blood sugar numbers.  They are not one size fits all.  What works for one person may not work for another.  B can eat pasta ALL DAY LONG and not spike.  L on the other hand goes through the roof.  It's a crapshoot for J.

Comparing is dangerous.

But support is not.   In fact, it is essential.

Some people have spent years fighting to get their blood sugars down to their personal holy grail A1C number, and once they get there, don't they deserve a cheering section?  Some people can't get their or their child's A1C below 10.  Shouldn't they be able to share that heartache and receive the unwavering support they need so terribly? 

There is no easy answer to this one.

Sharing is important.  But it is important to share responsibly. 

 And as with anything in life:

Buyer beware.  There is a story behind every A1C number...and trust me, it isn't a short one.

Flip Flopping.

Something is wrong with me.

Seriously.

The last few weeks Ryan has insisted on doing EVERYTHING.  He wants to work.  He wants to see every customer.  He wants to go to every meeting. 

He wants to make big future plans.  He wants to "normal."

And for the most part I was ok with that.

Except there was a lot of me saying, "Ryan, you need to rest."

And, "Ryan, you just got out of the hospital 12 hours ago.  Why must you work? 
Can't you call your customers?"

And, "Ryan, you need to listen to your body.  You can't over do it!  Slow down!"

And, "Ryan, please go nap.  You've been running around like crazy all day."

Until yesterday Ryan said to me:
"I can't do it all."

"I'm so tired I need to nap."

"I can't see all my customers, I'll call a couple."

"I'm not going to be able to make that meeting next month."

And then I'm all, "WHOA!  What you talkin' bout Willis??!"

Well, I didn't say it out loud.  But now that he is agreeing with me...I'm upset and depressed and scared on so many levels.  I didn't realize at the time how awesome it was that he WANTED to do those other things.  I didn't realize how AWESOME it was that he COULD do those other things.

And I want to scream, "Yes you can!  GO!"

(I told you something is wrong with me.)

He's finally doing all the things I asked him to do and now I've totally flip flopped.

I took a definitive stance on the issue and now like a seasoned politician, I change my mind.
I CHANGE MY MIND!!!

I'm lost.
Are you there God?  It's me Meri.  I am lost.  I think my swelly brain has hit capacity.

I change my mind.  

Run, Ryan.  Ruuuuuuuuuuuuun!

All in.

The other day someone at church asked me how I was doing. (I get a lot of that lately...I'm sure you can imagine.) But as I opened up my mouth to answer his question, I was shocked to hear the following words fall out of my mouth...

"I'm all in."

He looked at me for a moment, brows furrowed, trying to figure out what I said. I returned the look, pausing to figure it all out myself...

"With my faith that is. I'm all in. I've laid it all down at His feet...I trust that He'll take care of us."

And I do.

And I'm functioning.

How am I not certifiably insane?

My head is immersed in the fog of uncertainty. Sometimes, at the end of the day I look back and wonder how I got through it.

And now I think I know...

It is because I am all in.

Going all in has allowed me to cope with all of this in a way that I never thought I could.

Ryan was in the emergency room this morning.  I won't go into the details, but needless to say it was a setback. Once I let the tears out there was no stopping them.
All. Day. Long.

But deep down...seriously...deep down at the bottom of this lake of tears I've cried...there is a peace.

Cancer fog can be so maddening. Diabetes fog can be so maddening. Hormone imbalance fog can be so maddening. The world’s fog can be so maddening.

Maybe in a weird way I am certifiably mad, as in Mad Hatter mad…

But more important than that…right now…I am certifiably coping.

And that is a miracle I cannot deny.

It's all or nothing. I'm pushing in my chips. I'm getting up from the table.

As much as it terrifies me to think we might lose...I feel confident that our needs are known.

No good questioning things now. I have faith or I don't.

Am I scared? You bet your sweet bahookie I am.

But I'm banking on my faith. Banking that my faith will always exceed my fear.

I'm all in.

It's about now.

I've written about it before.  I was always the kind of person who couldn't wait until...you know...until.

I was always looking FORWARD to something.  When we have another baby.  When we get a new house.  When summer comes.  When there is a cure for diabetes.

When.

That changed sometime in my early thirties.  I looked in the blue and amber eyes of my babies and realized that tomorrow doesn't matter as much as today does.  My dreams for tomorrow are gleaned from my actions right at THIS moment.  I realized I needed to take things one  day at a time.  Not one month, one year, or even one decade at a time.  On the hard days, I've learned to take things one hour at a time.  When ketones are present, or a stubborn low is looming...one minute at a time.  I realized it isn't about the cure, or the newer things, or the weekend.  It was about today.

My realization that today is more important than tomorrow didn't come in one moment, but rather many moments of making myself miserable waiting for when...

I thought I had learned that lesson, but now that Ryan has cancer, I'm back to WHEN, again.

When we hear these results...when we get the new meds...when he's off the old meds...when the scan reveals this...when when when.

It isn't a good place for my swelly brain. 
(And don't think I haven't pondered the irony of my swelly brain vs. my husbands.)

I was driving to pick up the kids from school last week.  Usually I listen to mindless semi-rap/pop/semi inappropriate music just to keep my brain in a safe place.  Any music with a message...forget about it.  I'm in a pool of tears.  But on this day...I decided I was sick of stupid music and tuned into a local radio station that is well known for its family friendly music.

Damn you Miley Cyrus.  Damn you.

Hit me like a TON OF BRICKS I tell you.  Like the windows of heaven had opened and angels were singing directly to my heart.  All the "stuff" I had been storing in the attic of my brain was let go, and only one thought permeated to my soul...

It's about the climb.  Damn it.

There will always be another mountain I'll want to move.  It will always be an uphill battle.  I just have to keep my faith and concentrate on the climb. 

When we are in rocky terrain, we don't concentrate on the meadows ahead.  We concentrate on the rocks that are right in front of us and we plan each step we take NOW carefully so that we can eventually get through this rough patch.  If I just stand here and wait for the future, then I'm not progressing.  I need to keep moving.  I need to do something meaningful today.

No more waiting.

No more...when.

Today is when.

We need to kiss our children today.  Have a talk with them today telling them how proud we are.  Approach that person today and have a conversation we have been putting off.  Start those books.  Let go of the anger.  Get those family pictures, don't wait until we are skinnier.  Go back to school.  Start those quilts.  Call our parents, or our sister or our brother.  Clean our rooms.

Today.

Today is what I make of it.  Life isn't going to be less crazy later.  Life is always crazy.  There will always be another mountain.
(I know, blah, she is the last person in the universe I thought I would be getting sage advice from...)

I don't know what the future holds for us.  I have hope that it is wonderful.  But today I will stop thinking about when, and start thinking about...

Now.       <------- Wow.  If you really look at it, THAT is a pretty powerful word.

A little advocating goes a long way.

I hear it all the time.

"I wish people were more educated about diabetes."

"I wish there was more advocacy for Type 1 Diabetes."

"I wish our voices were heard."

It might not seem like it, but at this moment a small wave of advocacy has formed off the coast of California.  A group of bloggers and advocates from the DOC are meeting with the Bigs at Medtronic and they are making your voices heard.  They are telling them your hopes and dreams...and Medtronic, I am sure, is echoing it all back to them.

You see, it may not be obvious now...but there is a small army on the move to change the world and their perception of diabetes.  You might not be aware of them...but by the time I get done here, I hope you will feel a bit more uplifted knowing there others out there working to get the word out.

On my sidebar there is a button that says "I am a member to DiabetesAdvocates."  What do they do?  From the website it states:  "We help people who have diabetes and their loved ones realize that they are not alone. We help the diabetes community by sharing our personal experiences, spreading the word about diabetes news and treatment options, and helping to inspire a dialog between a diabetes patient and their medical team. We accomplish this through diabetes blogs, diabetes social communities, videos, radio shows, books, newsletters, and live events.  In 2011, the Diabetes Advocates collective will reach more than 6,000,000 people touched by diabetes."

If you read the list of people in there you will be amazed at the reach this community has.  Within its pages you will find Cherise, who founded DSMA, which stands for Diabetes Social Media Advocacy.  There is a Website and a RadioProgram, and an amazing Twitter Chat that happens every week.  It is an easy and fun way to get involved in the community.

Also within the DA pages you will find Kim Vlasnik.  She founded the "You Can Do ThisProject."  It is an awesome collection of videos that encourage and let you know that YOU ARE NOT ALONE.  How powerful is that?

There is Manny Hernandez who founded TuDiabetes and The Diabetes HandsFoundation.  He is pretty much the king of advocacy.  :)

And is Brandy Barnes who founded Diabetes Sisters.  Diabetes Sisters is a national nonprofit organization whose mission is to improve the health and quality of life of women with and at risk of developing Diabetes; and to advocate on their behalf. The organization offers a variety of online and in-person programs focused on the unique needs of women with Diabetes.

I could just copy and paste the entire website onto this post, but I think it would fun for you to explore the website yourself and discover the many many voices out there.  They are all raising awarness, and their reach is far and wide!

One small nugget of advocacy can cause a ripple effect.  It creates a bigger and bigger understanding throughout our community and our world. 

Just last year many Diabetes Advocates flew to Dubai for the World Diabetes Congress.  They were invited there and the ripples of their visit is still being felt throughout the world.  Our voices may seem small, but they are being heard.

I know I'm not in Dubai.  I know I'm not reaching the masses and educating on the scale that I wish I could.  I'm not today...but maybe someday.  And until then I will type my voice and my feelings here on my blog.  One small step at a time.  One ripple effect at a time.  Helping one person at a time.  It all makes a difference.

My heart hurts that I had to miss the advocate forum in So Cal today.  But I'm overcome with gratitude for the people that ARE attending.  I know they will pass along the information we want Medtronic to hear oh so badly.  The wave of advocacy is gaining momentum. 

You can be a part of it too.

Speak up.  Say something.  Hug someone and tell them they are not alone.

It all makes a difference.

It really, really does. 

(To follow the DOC at the Medtronic Advocate Forum today,  to to twitter and follow #MedtronicDAF)

They bleed.

As a young girl, I was hardwired to believe that the sight of blood was a bad thing. Bright red meant danger.

Blood meant Band-Aids, Neosporin and warm washcloths to cleanse the wound.

Blood meant that someone was injured. It meant pain. It meant tears.

It meant that the protective armor of a scab would come to protect the wound while it heals.

Blood was never a good thing.

And now here I am, a mother of three boys with Type 1 Diabetes. My fearful perspective of blood has been diluted. So much so, blood doesn't evoke the feelings of danger that it once did.

Blood is now a symbol of the boys testing their blood sugar, and as such...it doesn't faze me.

I washed blood off the front door today. Seriously, who does that?

How did it get there?

Was it from a quick test before running out the door to school?

Was it from a quick test before riding a bicycle?

Was it from a quick test before running out to scouts?

I don't know. All I know is that the blood is a good thing. It means they are testing. And testing means safety.

When I wash the blood off counter tops, cabinet doors, light switches, and knobs...my memories often flicker back to the time when blood would startle me.

And after I remember, I then wonder what another person would think if they saw it.

Would they be horrified? Would they think it was disgusting?

I assume that they would.

Unless it was the blood of their own child, deep down I am assured they would feel differently if that were the case.

Part of me feels like I am supposed to be disgusted. But the numbness doesn't allow me to feel that way anymore.

Blood is now sacred. Every drop I see fall...every drop I clean up...I have the deepest respect for.

Blood doesn't mean death or fear or harm as it once did.

Blood means life.

And my boys live.

The blood on my door tells me so. My soul stirs with happiness because it is so.


(A blog post all about diabetes?  How is that for Normaling?!  Booyeah!)

Normaling.

Ryan slipped off to bed early the other night, so I grabbed a blanket and spent a couple hours watching 30 Rock episodes OnDemand. I'm not an avid watcher, but the sitcom provided me with a host of mindless giggles, which totally served its purpose of keeping my thoughts on lighter things.

In one particular episode, Jenna was uber excited that her boyfriend was coming back into town. Apparently these two had a pretty hot and heavy/crazy-like relationship, and as such she was expecting a long adventurous night with her man. Turns out though, they were both so tired from their long day they ended up falling asleep before anything crazy could happen. The next day, in an effort to make falling asleep seem not so lame, they gave what happened a "kinky" new sub name: "Normaling." They spent the next few weeks doing things that only "normal" couples would do. Going to Bed Bath and Beyond, and spending hours deciding where the best place in the living room a certain chair would fit best. In the end it was realized that "Normaling" was really them transitioning into a steady, normal relationship. It wasn't this exiting cutting edge phenomenon after all...

It seems to me that this is what Ryan and I are doing right now.

We are Normaling.

We spend our days thrilling in the fact that we are doing perfectly normal things. It seems unnatural these days to go to the store and have a conversation about the succulent tastes of different kinds of oranges. It seems unnatural, but we partake anyway. Awkwardly, yet happily in what seem to be our "roles" in this episode of our life.

We are playing the part of normal.

"How are you feeling, Babe?"

"Hanging in there. How about you?"

Normaling.

"What would you like for lunch?"

"Oh Lucchesi's deli sounds good to me!"

Normaling.

"Oh, we are out of eggs."

"I'll run by the store later this afternoon."

Normaling.

Blogging this post right at this moment?

Normaling.

It all FEELS like we are reciting lines from a script.

We know how our days are supposed to play out. We know our cues, we know our lines...and we spend our days convincing each other that our performances are natural rather than scripted.

I know as we continue to play our parts, life will gradually become less awkward.

As an extension of all this normaling I feel as though I'm an understudy in my pancreatic duties as well. Changing sets, counting carbs, nighttime checks...they don't come as naturally as they used to. There's no flow.

The other day the boys ate lunch and I didn't have them check their sugar before. I know, "GASP!" I even made sure there were strips with me before we left the car to go into the restaurant. But as we sat at the table...everyone was so happy, and so talkative...I got lost in our "Normaling," and never had the boys do their checks. Which...I know...there are crazier things...

But , it just serves as a small example that we need to relearn "our normal."

No, I don't think it is a bad thing that diabetes is on the back burner keeping warm while we are feasting on normalcy. I just hope I don't faint when the leftover A1C's come looking unappetizingly warmed over in a tupperware bowl next month.

Next month seems years away though.

Right now I can only think about today.

I'll worry about tomorrow, tomorrow.

I think under the present circumstances...that is what a normal person would do.

I think.

I'm still trying to figure this whole "Normaling" thing out.

Choosing hope...again.

I'm standing still with my arms stretched out on either side of me.


I am holding two ropes. One in either hand. Each rope being pulled so my arms are taut.

On one side I have the pull of an army of friends and family. I have my faith and my hope.

On the other side I have despair. Fear. Pulled by a couple tiny thoughts. They are embarrassingly strong.

And as such. I stand here still.

Looking side to side it is a no brainer. Hope will win. I see the good on the hope side. The smiling faces full of love and prayer. Thousands of faces.

And on the other are pathetic thoughts that I let seep into my unconscious. Why do I allow it? Hope cannot win if I let the fear contend. I'm angry at myself for letting the fear become so strong.

It all seems so hopeless, being stuck in the middle.

One has to win.

And as I sit here now pondering the opposite forces that have taken over my life, it has occurred to me in this moment that I have all the power.

I can let go of either rope.

I can choose hope, or I can choose fear.

I choose hope.

I've chosen hope before, but it is amazingly clear to me now that I need to wake up every morning and make a NEW conscious decision to hope. Or to not.

THIS morning I choose to keep the faith that everything will be ok.

THIS morning I will choose to believe that there are bigger forces at work. Forces bigger than cancer.

THIS morning I choose to let go of the rope of fear and let the forces of hope propel me into their arms.

Hope is a choice. Faith is active. I can't sit here in limbo waiting time to pass. Waiting for answers.

I need get up and actively hope. Actively let go of fear.

TODAY I will. For me. For Ryan. For the boys. I am opening up my hand and letting go of that rope.

And tomorrow I will wake up and make that decision again. And the next day again.

And again and again and again. Until hope is all that is left...and there will no longer be need for the choice.

I can do it.  I will do it.

It seems, there is no other choice.

An ocean of emotion.

When your emotions are an ocean and you are damming the flow with Kleenex, one has to tread lightly at all times. But when monthly hormones get thrown into the mix? Forget about it. The ocean's tempest cannot be contained.


I'm a wreck.

All the feelings that I have been able to keep in check have risen to the surface.

Where is the peace?

All I can do today is pray.  Oh how I wish I could look into His eyes and hear him tell me, "All is well."

Despite my substantial support group, today...I felt alone. I confided in the Lord that I felt guilty that I wished our relationship was more tangible. I recognize that faith is hope for things not seen...but today...my brain is taken over by human hormonal wiles. I am hurting.

But as I've learned so many times before, the man upstairs always finds a way to send me his love. He finds the best ways to answer my prayers, and in fact...he often uses each one of you as his vehicle.

Ryan's friend stole Ryan away for lunch and a movie today. And today, as I prayed for my peace to return...and maybe a little chocolate to pop up SOMEWHERE...my prayers were answered in one of the most unlikely of places.

The mailbox.

A generous check from a stranger. He read our story from another blogger.

A sweet card with the kindest note I have ever read.

A package full of Love from a friend.

Another envelope full of bracelets for the family:

and packaged lovingly at the bottom of the envelope...

This:

I felt like He took my hand today, and wiped my tears away through you...my friends.

I'm almost embarrassed to say this is just the tip of the iceberg. We have been the recipients of SO much kindness. How can we despair? Goodness seems to cancel out all the bad.  Love is prevailing.

A friend gave Ryan the book, "It's Not About the Bike." By, Lance Armstrong. Ryan read me this quote last night from its pages...

"When I was sick, I saw more beauty and triumph and truth in a single day than I ever did in a bike race."

Ryan and I would like to echo his sentiments.

Your good thoughts, prayers and love are our answered prayers.

We are blessed for sure.

Not trying is not allowed.

I haven't been getting a lot of sleep, and understandably I've been under a little bit of stress. I want to keep everything as close to normal around here for as long as possible, but we all know, things aren't normal...so I've allowed myself a couple small shortcuts. 


I was so exhausted at night I came up with the brilliant idea of letting the kids go to bed a little higher than I usually do...just to curb the 2am lows. I thought, "Who would fault me? Just a smidge higher. No biggie."

But diabetes doesn't allow shortcuts. Diabetes does not allow you NOT to try your best. Low 200's mean me doing a ton more laundry, and boys waking up not feeling so great in the morning.

So then I think..."A couple more hot lunches aren't going to hurt. Who would fault me for not making homemade lunches every day of the week?"

Here is the issue with that one...they actually have to LIKE the hot lunch. And when you pre-bolus, and one of them doesn't eat said lunch? Well that leads to a 31 at 1:00 in the afternoon.

As I ran through the halls of my boy's school the other day gripping two juice boxes in my hands, I pondered the ridiculousness of the situation. Such a little thing, allowing hot lunch...and here I was worried my son will pass out or have a seizure because of it.

No shortcuts allowed. Ever. No NOT trying. Ever.

When it comes to diabetes, shortcuts mean more work and sometimes even danger. It's a hard lesson to learn that we have to always TRY, or there are consequences.

Another thing not allowed within the parameters of Our Diabetic Life: Muting the phone when you are in the doctor's office.

Inevitably someone will be low and you will have 4 missed phone calls, and to sweeten the pot you'll get two missed texts from your son who needs you to bring his Jazz band uniform to school STAT.

Another thing not allowed? Putting off needed set changes until the morning.

This morning two of the boys pumps alarmed at the same time on the way to school. It is iffy whether all three boys will make through the school day without running out of insulin. With my expert guesstimations, two will run out about an hour before school gets out.

Do I go to the schools at lunch and refill, or play the hand and see what happens? There is usually a little bit of insulin still delivered after the pump shows zero units, right?

Yeah, I have a problem.

Somebody stop me.

Sad thing is, I've already learned all these lessons before. Apparently, I'm a glutton for punishment and think It would be fun to relearn them all over again.

You can't gamble with diabetes. You have to always try. Otherwise everything can crumble quickly.  I can't do it all, but I can try my best not to take too many shortcuts/risks.

Yoda has a famous saying:

Respectfully, Yoda...you can suck it.  (Not very ladylike, sorry for that.)

In Our Diabetic Life...it is all about the try.

NOT trying is not allowed.

Try, or try not. That is all we can do.

Choosing Hope

We are very aware that we should be angry, confused and screaming at the fates.
We know we should be withering in a corner shaking with fear and confusion.

But that isn't how it is around the Schuhmacher house these days. There is something bigger at work in our hearts. That something is faith.

We are cognizant of the fact that faith can seem like a fantastic thing. The Lord knowing of our family personally and in turn blessing us with those things we stand in need of can seem practically impossible.

But although it may seem so, at this moment in time we are sure as the day is long that we are being carried by His love.

Ryan and I sat in bed last night and tried to explain to each other the way we were feeling. It is so difficult to describe. Both of us feel like our hearts have stopped beating, but not in a scary...we are going to faint any minute kinda way...it is more of a peaceful calm that has canceled out the buzz of our diagnosis shock. It is pretty unexplainable. How can we feel such peace in such a scary time? It is very surreal.

It is obvious to us that there is a divine hand in all of this.

If you would have asked me a couple weeks ago, I would have told you that the world was full of mostly selfish people who are really bad drivers. Sure, there were pockets of good people all around, but in my limited focus, that wasn't the norm. I lived in a bubble, completely absorbed in Our Diabetic Life. I couldn't look past the annoyances of the world and see people's hearts for what they were.

Well...the bubble has burst. And I see with perfect clarity the overlying goodness of the people in the world. I'm angry at myself for having to go through a crisis such as this to see. People mask their goodness by their hurt sometimes, and it is painfully obvious to me now, that almost everyone is hurting from something. Good lives. And in our case, it has prevailed.

It is almost unfathomable the outpouring of support and love we have received throughout the diabetic community and beyond. Our church family, our blood family, our earth family...they have all reached out to us, and we feel more than anything, abundantly blessed.

We are crying ALL the time. But it isn't due to despair...it is because we are constantly touched by the thoughts and prayers of all of you. Every note, every song, every picture, every blog, every status, every tweet, every call, every meal, every hug, every well wish is burned into our hearts. We are trying hard to accept all the love. It seems silly how easy it is to give love, and so hard it is receive it.

Ryan and I have changed. In one week we are different people. Seems impossible, but I promise it is true. We see the world and every person within in a different light. We feel our Father in Heaven wrapping his arms around us, and we truly believe that our miracle is in the works.

Your prayers and good works are making a difference. We feel them...they are as tangible as the keyboard my fingers type on this moment.

Ryan was never a facebook, twitter or blogging kinda guy. Now, when he wakes up at night and can't sleep he turns on my computer and reads the love. He wants to send a personal message to all of you. That will come soon.

Until then I want to leave you with this quote I found:

"The scriptures say that there must be an opposition in all things. The adversary uses despair to bind hearts and minds in suffocating darkness. Despair drains from us all that is vibrant and joyful and leaves behind the empty remnants of what life was meant to be. Despair kills ambition, advances sickness, pollutes the soul, and deadens the heart. Despair can seem like a staircase that leads only and forever downward.

Hope, on the other hand, is like the beam of sunlight rising up and above the horizon of our present circumstances. It pierces the darkness with a brilliant dawn. It encourages and inspires us to place our trust in the loving care of an eternal Heavenly Father. There may be times when we must make a courageous decision to hope even when everything around us contradicts this hope. As one writer expressed, “in the depth of winter, we find within us an invincible summer.”"

Our family has officially made the decision to Hope. It didn't come at one moment, but rather through small doses of encouragement and prayer throughout this week. Your prayers have brought us the peace we needed to get to this place. Saying thank you is totally insufficient. You have saved us from despair.

How will we ever repay you for that?

God bless each one of you for your goodness.

Cancer.

I don't want to write this post. In my past life, I wouldn't have written it. But for some reason, I know that I have to. For some reason, Ryan and I know it is important that you all know what is going on.


So I will do what I always do. I will write. Whether I like it, or not.

Before I get to the crap of the matter, you should know that my husband is the most important person in my life. He is honestly in every capacity of the word...my "best friend." My boys are important to me, they are my heart and soul...but they will find their true loves one day, and in turn be complete as I am. Ryan is my person. He is so much better than me, and his love is my greatest treasure.

I have always known that what I have with Ryan is rare, and special.

There isn't a day that goes by that I don't think to myself how lucky I am to have him.

We are one.

So why this is happening to US, I do not know. I can only believe that there is a reason. There is a greater plan that my eyes can't see yet.

Ryan has cancer.

Or maybe, he still has cancer.

I didn't really write about it a few years ago, but Ryan had Melanoma. It was one mole that looked like a pencil eraser, and we only had it removed because it kinda grossed me out. It wasn't black or asymmetrical or anything when we had it removed. The doctor sent it into pathology, just to make sure it was nothing. But it wasn't nothing. It was a big something.

Surgery and chemotherapy. It was a long haul, but we thought it was gone.

A few days ago we found out it isn't gone. In fact it is back in the form of 6 brain tumors, and multiple tumors in his lungs and abdomen. Metastasized melanoma. It's pretty much the worst kind of cancer there is.

But that is neither here nor there right now. Right now we are focused on moving forward and getting things done.

He begins whole brain radiation on Thursday. He will have this every day for a few weeks. He'll lose his hair and be tired, but we are hoping for lean side effects.

The next step will be more taxing. The original specimen of his cancer removed a few years ago is now being analyzed at UCSF. Depending on the mutation it has, we will form a medicine treatment plan. Chemo or immunotherapy. Both of the medicines that are on the table have been approved by the FDA in just the past couple months. We feel completely blessed, and don't feel it is an accident that we were diagnosed this moment in time. If we found out only months ago, these amazing therapies would not have been available.

Why am I telling you this? This is so personal, and usually this would be just too close to home to share with all of the world. But Ryan and I have the strongest impression that we need to share this with everyone. We NEED your prayers.

To be honest, we need a miracle.

We have set aside this Sunday, March 4th for fasting and prayer on Ryan's behalf. Our hope is that people all across the world, every denomination and belief, will pray for a miracle for Ryan. If you feel impressed, please ask your family and friends to participate. If you belong to any prayer groups, or if you have a close church family you can ask to join in, we would appreciate it more than you'll ever know.

God will provide. Let us bombard heaven with our pleas.

Facebook has already exploded with support. My inbox is full, My IM's are never ending, and my status updates are too numerous to keep up with.

Other D Mama friends have set up a facebook page for me. You can find it here. I'll post updates there. Please share the page with your family and friends. The more prayers the better. I can't help but feel deep down that this is true.

There is the craptastic truth. All of it. Uncensored.

How are we? We are on the roller coaster. We are laughing one minute, delirious with tears the next. But we FEEL the prayers. And our hope grows stronger by the minute.

Somehow we know we will be ok.

Somehow.

It won't be easy. But the craziness that lays in front of us will be worth it in the end. We stand ready to receive that miracle.

Pray friends. Just pray.

Luck, Scientific Genius, or Black Magic Wonder Woman?

An experiment? A Hypothesis? Call it what you may. But last night I tried a little somethin' somethin' out and got some pretty remarkable results.


You be the judge.

My feet drug as I slumped to the boys' rooms at 12:30am. My head was heavy, my limbs were rubbery and my head was filled with uncertainty.

As I checked the boys I spontaneously tried some black magic.

"Pleasedon'tbelow Pleasedon'tbelow Pleasedon'tbelow Pleasedon'tbelow."

76.

Crap.

Next boy.

"Pleasedon'tbelow Pleasedon'tbelow Pleasedon'tbelow Pleasedon'tbelow."

131.

YES!!

Next boy.

"Pleasedon'tbelow Pleasedon'tbelow Pleasedon'tbelow Pleasedon'tbelow."

72.

Crap.

Now many of you might think that my muttering was all for not. But I present you with the hard facts:

It worked 33% of the time. 1 out of 3 times. THAT is nothing to sneeze at people!

Those of you thinking I've lost it a bit might want to dispute the many other "scientific/black magic hypotheses" I have made throughout the years.

Like the fact that if the boys have a banana for snack at school...they only have a 30% chance of going low by lunch. No. I don't have the hard numbers to back that one up, but I've got something better. My gut.

One might think it is crazy to hold my breath through the tunnel near Sausalito whilst on the way to the endo's office...making a wish that all the boys A1C's will be better than I think they are.

Well here's a shocker for you. IT WORKS! Every time! Boo YEAH! Of course, I always THINK they'll be in the teens, but that is neither here nor there.

Some of you might think I'm off my rocker that when the phone rings I say a little prayer that it is a telemarketer. Better someone selling me solar panels than a boy calling me from school with a problem blood sugar, I always say.

Prayer works. Telemarketers are coming out of my ears around here!

Luck? I think not!

Why does bolusing 100 carbs, (120 if there is ice cream involved,) at the Chinese all you can eat buffet work ALMOST every single gosh darn time? I don't know. It just does.

The results are practically irrefutable.

I got a million of these folks! Grey shirts on Wednesday, Waffles on Mondays...it goes on and on!

Sure, what works for me might not work for you.

(Ok, what works for me PROBABLY WON'T work for you.)

But as we ALL know...

Your black magic may vary.  It's a scientific fact.

And the numbers follow...

The fact that our son M will be a Senior next year has been hitting us hard. Time is flying, and the time that we have to force him to be with us is getting slimmer by the minute. Because of this, we have been making it a priority to go out on family "adventures." A couple times a month we try to go do things our family has never done before. Yesterday our adventuring took us to a couple tourist destinations in San Francisco.


I keep replaying the day back in my mind. It was a whirlwind of fun, and a great family bonding day.

But whether we like it or not, diabetes is part of our family too. That means it got to bond as well.

It occurred to me that every wonderful memory our family has made...numbers are attached to it. Take this picture for instance...



We were on top of Coit Tower, and B and L were running high. I gave them less insulin for breakfast because we had planned to climb 21 stories of stairs to the top. We arrived only to find that the stairs have been closed for quite some time so we had to take the elevator. (I was part horrified, part completely relieved if you can imagine.)

The picture below is our family in China town. Everyone's numbers were AOK by then...but still, they were there in every moment.



And then, when B and L experienced Benihana for the first time...can you guess who was low?



We can run, we can adventure...but we can't hide. The numbers find us. They are a constant swirl of information above us at every moment.

The fact remains though...we had an amazing time as a family. We laughed and shopped and ate like nobody's business...and even after all that Japanese food..the boys went to bed with 112, 130, 117. (That last one was J's. He ate lunch with us, and then later went to an all you can eat Chinese Buffet for dinner with his friends. HOW DOES HE DO IT!!! I almost think he is magic.)

Anyway...we made great memories regardless of the numbers. The smiles were priceless, and the frowns were easily melted away with some fast acting apple juice, kindly comped to us by the bar for L's low.



The memories of the numbers are trumped by the memories of the fun. It is always worth the risk to take a journey away from the home. Maybe diabetes won't play fair...but you can bet your family will overcome and find a way to make it all work out in the end.

Fighting numbers is no different on the fly as it is at home. It is worth the chance.

And definitely worth the memories...

It comes naturally.

When we are suffocated with numbers. When we are buried in ratios that make no sense.

It comes naturally for us to rise up above the diabetes smog and find the air we need to keep going.

When our children are burnt out. When they voice their frustrations.

It comes naturally for us to lift them above us, and place them on the pedestal they deserve.

As parents we refuse to let the darkness overtake our children.

As parents of children with diabetes, we take the hurt and we use it as fuel to take that next step.

It is only natural for us to fight.

Because when it comes to our children there is no losing.

There is no surrendering.

Sure, there are times when we think this hole is going to collapse on us.

Sure, there are times when we are sure the sun has forgotten to shine.

Sure, there are days when we announce we are defeated...

even though we aren't.

Because even if we let the moment win...we don't let the despair win.

We rise up.

We check and we check again. We tweak and we tweak again.

Losing isn't an option when the very air we breathe lives with diabetes.

Having a bad day?

Having a bad week/month/year?

You are not alone. And even though you want to give up...even though you say you are going to give up...even though you are sure you are going to give up...

I know you won't.

I KNOW it.

(Because you haven't given up yet. Right?)

Look at your track record. You win every war.

You eventually win them all.

Here in the DOC there is an entire bottle of "same." Take two and you'll feel better in the morning.

It comes naturally for parents to hold the world on their shoulders.

Naturally, we want to take all the hurt away from our kids by using our super power: Love.

We want to, but the hurt comes anyway. All we can do is use our love to salve their pain.

Our love can't cancel out the pain, but it can soothe it...and that is enough.

You are enough.

Your works are enough.

You can do this.

Our children can too.

If you are consumed right this moment, remember that our lives on this earth aren't meant to be miserable all the time. We are meant to find the joy in the shadows of the misery. There will be moments that seem to be devoid of light. But it is all smoke and mirrors...the joy is always there.

We can find that joy in the smiles of our children. We can find it in the kindness of friends. We can find it when we help others.

We can and we will find that joy.

Because when we love our children as much as we do...

The joy?

It comes naturally.

The middle diagnosis.

Yesterday was February 12th. It came and went like any other day. We went to church. We went to my in laws. I helped B finish is big report. We had a beautiful dinner. We came home and watched Once Upon a Time as a family. We went to sleep.


But yesterday was much bigger than that.

Yesterday was actually the very day L was diagnosed. At the tender age of 8 years old, he would have been celebrating 6 years with Type 1 Diabetes.

We will find a way to celebrate this week, but it occurred to me, I've never told L's story in its entirety. I don't even know if I remember it in its entirety. But I'll try.

I know it was a Sunday, and it was two days before Valentine's Day. The night before my husband and I went out and bought each boy a box of heart chocolates. We had never given the boys so much candy on Valentine's day, due to the fact that J's insulin wouldn't tolerate it. But he had been on his pump a couple years, and he could eat what he wanted now...so we thought, "what the heck! They so deserve it!"

As it turns out, no one got the chocolates.  They sat in my  closet for months before I ended up just throwing them away.

Early on that Sunday morning L woke me up for some water. Three times.

When he came back for the fourth I said, "You better hope you have diabetes buster, because it isn't ok to keep waking up your mama for water." It was a joke, and at 2 he had no idea what I was talking about, but no sooner had the words left my lips when Ryan grabbed my arm. We both knew in that moment that we needed to check his sugar.

It came up 220 something. We looked at each other in shock. I scrambled for the phone to call my endo. I was hysterical. Our regular endo was on Maternity leave, and this one was very blunt.

"Yes, he definitely is Type 1 now. I don't know why you are so upset. It is what it is."

"HOW can you know that from one reading? You don't know that! Stop saying that!"

"Go in this morning for blood tests, we'll see how far down the road he is."

We went in and tests only slightly confirmed what we feared. But here is the kicker...his blood sugars went right back to normal the next week. And the next.

And we went into denial...big time.

As long as we didn't feed him any carb bombs, his sugars were perfectly fine. Once in a while we would get a wonky one. Once in a while a 300...but then it would disappear and all would be well. The scariest part of this time was the lows. More than highs, we would see lows. He would get shaky, sweaty and scared and we would give him some juice. His pancreas was confused...it would help out a little too much when there was a high looming. It made me wonder if he wasn't type 1...maybe he was just hypoglycemic.

You can imagine the roller coaster ride I was on. One day I was sure he was Type 1. The next I was sure he was not. Until a few months later when he got strep throat. His throat closed and he wasn't getting enough oxygen...they rushed him to the hospital and he was put on what I assume were steroids.

Diabetes and steroids don't mix. He needed insulin immediately. His blood sugar went through the roof and there in the hospital it was realized...we have two boys with Type 1 Diabetes.

But here is the thing. We were all so relieved that we didn't have to live on that particular is he/or isn't he roller coaster that we took off running and ready to battle. There wasn't so much depression as there was determination. J admitted that it was nice not to be alone. He felt so guilty about it, but he felt closer to L despite it all. He would even check his sugar for us, and get his site changes done first to show L it was, "No big deal."

Also, L was a couple years older than J when he was diagnosed. He could communicate when he was hungry and he could communicate that he was thirsty. It was much easier altogether this time around. We knew we could do it.

And we did.

Now B's diagnoses...number 3. I didn't handle that one as gracefully. In fact I pretty much lost it.

But that is a story for another day.

I am so thankful that we have L in our lives. He is so much fun, and is the biggest sweetheart. He is unique, and innocent and everything you would want in a friend.

He is adored.

and

He is my hero.