Kunk

If you haven't seen the new update on Ryan, please read the link to the facebook update:  HERE.

Have you ever seen the wooden marble maze game?  It is a wooden box with a curvy lined trail that a marble has to follow.  It is controlled by two dials on either side that make the wooden board rotate and swivel so the marble will, (hopefully,) go the direction you want it to.  The big catch is there are holes throughout the entire game board that the marble can fall through...If you fall through, your marble is taken back to the very beginning...

Hello...the story of my life wrapped up in a wooden puzzle analogy bow.

That marble and I are kindred spirits.

We begin in the starting spot every time with optimism and hope that THIS will be the time we make it to the finish line.  We begin our journey at a good clip, confident that we are agile enough to avoid the pitfalls of despair, when low and behold...KUNK. 

Start over.

It happens so suddenly that every time it is a surprise.  We are fine.  We are laughing.  We are normaling.  And then KUNK.  We aren't ok anymore.  We are in the dark boweled abyss of the wooden box trying to find our way back to the starting line.

It's frustrating.  <------- That is the nicest way possible to explain my feelings right now.

Ryan's body is currently failing him.  He has no strength...he can barely walk.  It is scary and frustrating and one of those things that could stay the same or get entirely worse.  The unknown...THE UNKNOWN...it sucking the life out of any sanity I may possess.

In two weeks everything has changed.  What will happen in another two weeks? 

(Insert unearthly scream of frustration here.)

I try not to go there.  I beg Ryan not to go there.  We need to concentrate on today.  And today Ryan received his first infusion of the drug that we are counting on to save his life.  We got him there.  He received the med.  He is home in bed.

Win.

Win!  Marble maze from hell...take that!

Now I will concentrate on Sunday when all my friends and family will unite in prayer in Ryan's behalf.  I hope that you will join us.  (In fact, you don't have to wait until Sunday.  Ryan could use those prayers today.)

What can the power of prayer do? 

Considering who is at the receiving end of the prayerful pleas...I imagine it can do anything.

Actually, I'm counting on it.

Until then I will pick my marble up and put it back to the starting point...again.  Over and over and over until we make it through this joke of a maze we have been dealt. 

Life can KUNK me all it wants.  I'll start over. 

It is exhausting.  <---- Being kind again...but we will find our way. 

Your prayers will help.

Meri to teachers: Just keep them alive

I have a history of the back to school crazies.  The worry usually eats me alive.  My MO has always been:  Cry a lot, panic a lot, and then pretend in public that I don't cry a lot and panic a lot.

This year I have bigger fishes to fry, so for some reason, (I think we all know the reason,) the kids at school are the last thing I'm worried about...

Ok...maybe the next to last thing I'm worried about.

Monday I met with L's new teacher.  He is a teacher we haven't had before, but one I'm looking forward to L having none the less.  On Sunday night I was up late in bed going over in my head what I was going to say to him.

I had grand visions of writing on the white board.  Using object lessons and similes that would make the best professor proud.  In my head it was simple and brilliant.  It was going to be an easy peasy presentation.

The next day I walked into his classroom, sat down and went, "BBLLLLLLLARRRRGGGGGGGG!"  And threw up all the information on the table.  There was no rhyme or reason to the way I presented any of it.  It was like, "BLARG...here's all the information, try to sort through the craziness of it...just keep him alive, ok?"

That is my goal this year.  Keep them alive.  I believe in setting reasonable goals and this one seems the most reasonable to me.

I explained to the new teacher that insulin is a hormone, and imitating a hormone is not an easy thing to do.  I'm aiming for a moving target, I do the best I can...but diabetes has a wicked curve ball, and he likes to use it often.  I told him that I am connected to thousands of families with children with Type 1, and on my blog I try never to give advice.  Because what works for L, doesn't always work for B, and if diabetes varies that much within my own family, just think what it is like around the world.  Sure there are rules of thumb, but all those rules have their own sets of variables and sub lists depending on the person who has diabetes. 

B is having the same teacher he had last year.  SCORE!  When I went in to drop off B's supplies, he wanted a little refresher course.  "We want him in the 100's, right?"

"If we lived in a paradisiacal utopia, yes...always in the 100's."  

I reiterated, lows are treated when under 100.  Anything over 120 needs insulin.  Anything over 300 starts to get uncomfortable.  But if a number is off, it isn't because B didn't do the work.  He does the work, and I do the work.  Diabetes just messes with us sometimes.  No good numbers, no bad numbers...just a road map to get us where we want to be. 

Is it that obvious I am worried about being judged by the boys blood sugar numbers?

Now J is starting High School.  I left a note stating I would like a 504 meeting and they haven't contacted me.  (I totally expected that.)  Luckily J is self sufficient.  The only thing I'm worried about is PE, though I'll fry that fish before it starts to stink.  I made some laminated sheets stating some of J's rights to put into his teacher's boxes today.  Hopefully they will read them and call me if they have any questions.

Now I'm heading to the high school soon with the laminated cards along with a letter explaining his life.  I was afraid they wouldn't read my letter, so I highlighted, "J has Type 1 Diabetes," and "J's father is fighting an intense battle with cancer."  Try highlighting those sentences over and over and over again without crying.  Not cool.

Tomorrow is the big day for the boys.  They are all excited...and I'm excited for them.  I know it will be a crazy year...and not necessarily because of their diabetes.  But we can do it.  We always do!

Here's to keeping everyone alive!

Seriously.

I believe.

I'm human.

And I believe in God.

Both.

It's not easy being human AND believing in God. 

It takes a lot of guts to believe in God these days.  A lot of faith too.

Ryan's diagnosis has been the hardest test of my faith yet.  And that's saying a lot.

It's been almost 6 months since we were told the news and last week had to be the hardest seven days yet.  When we found out Ryan's "miracle" med wasn't working anymore the doctor sent us to UCSF to see if Ryan could get into a trial.  Turns out there are four different trials that would work for Ryan, but all are contingent on Tuesday's brain scan showing no growth in any of Ryan's tumors. 

That would take a miracle.

If there is growth there would be only one more med that is FDA approved that we could try.  It works for 20% of the patients, and isn't very effective when the patient is on steroids. 

Ryan is on steroids to keep the swelling down around the tumors in his brain.  Remember when he was diagnosed and there were only 6?  Well, there are a lot more now. 

We tried to continue weaning Ryan off the steroids last week.  That led to dizziness, headaches, vomiting and some loss of hearing in his right ear. 

So yeah, last week sucked.

Last week my faith was tested tenfold.  Nothing LOOKS like it is going in our favor.  The medicine we need to cure Ryan seems to be out of our reach.  I won't lie....I got angry.  I'm human after all.  I lost hope for a day and wondered if I was an idiot walking around with so much hope for the last 6 months.  I questioned every answered prayer.  I questioned all of it.

And then at the end of that awful day, I prayed.  Hard and true. 

I asked for my hope back.  I asked for peace and knowledge.  I asked that we would be led to the medicine that would provide our miracle.   I told him I know I shouldn't  ask for a sign, but I needed something to hold onto. 

And the next morning my answer came in the form of two Jehovah Witnesses knocking on my door.  When I saw them I immediately rolled my eyes...why didn't I look out my peep hole!! 

But the young girl said, "I've come to talk to you about miracles."

And I said, "Ok."

And as she spoke to me you could see how shocked she was that I kept listening.  She would stop after every sentence and look up at me for permission to keep going.  I would nod and she would continue.  She told me that many people believe miracles come from medicine and science...but really miracles come from God.  Everything she told me I already knew.  But it was just what I needed to be reminded of...it brought back the perspective I needed to move past the fear.

She quoted Luke chapter 4, verse 40.

"Now when the sun was setting, all they that had any sick with divers diseases brought them unto him; and he laid his hands on every one of them, and healed them."

When she was finished I closed my door and walked straight over to Ryan. 

"Miracles come from God," I said.

"I know."  He says.

"I know too, " I said, "but I forgot.  I've been so focused on our med options, I need to keep my mind on the bigger picture."

I tossed the pamphlets on the counter and  I walked out to the mailbox.

 Inside was a package from Hallie.  It contained the bracelet pictured below with a note saying she saw this and knew I MUST have it.

I want to apologize for the religious post.  I want to...but really, I'm not sorry.  I am a religious woman.  I believe that those sweet young girls were prompted to knock on my door to send me a message.  And I believe Hallie was prompted to buy me that bracelet.

I believe my prayer was answered.  Am I an idiot to believe in our miracle?  Maybe.  Some of our doctors might believe I am. 

But I believe anyway.   100%.

I believe in God and I believe in our miracle.  My other option is not to believe, and that is just completely unfathomable. 

He knows our family.  He knows our needs, and He hears our prayers.  I know that He loves Ryan, and my boys, and me.

I know it.

It isn't easy being human and believing in God.  Some of you are reading this and think I'm insane, I am sure.  And that's ok.  Because we get to make our own choices in life.  I've chosen God.  All my hope for a better day comes from Him and His mercy.

I'm all in.  That's what it all comes down to.

I believe God can make a way when there seems to be no way.

And as hard as the next few months are going to be...I'm going to cling to that faith.

One day at a time.  One prayer at a time.

I believe.

Blogjacking revisited...

I recently went out and bought a new phone. The old one was a shenanigan seeker, and I just couldn't tolerate it anymore. Here's hoping for a successful school year with the new guy.

RIP old guy...this repost of your blogjacking is a great reminder why you won't be missed...














(Sorry dude. You had to go.)

This life vs. that life

I don't know how it is I'm hardwired this way...but I can write much better than I can speak.  Now, if I write a speech, or a talk of some sort...I can deliver it marvelously!  But if I'm put on the spot and need to spout a long diatribe on a subject...If I haven't written about it before...I'm lost.

Confused much?

Point being, when I sit down at the keyboard my thoughts flow so much easier.  I had a dear friend stay with me this weekend while Ryan and the boys were away camping.  We were up until the wee hours of the morning, talking about everything under the sun.  It was wonderful, and at the same time harder for me than I ever thought it would be.  When I would say, "I believe that..."and have a story I wanted to convey, I stumbled awkwardly through my explanation.  "I believe this because...blah blah blah...ummm, yeah."  She didn't in any way make me feel stupid, in fact she nodded enthusiastically and loved me just like she always had.   It occurred to me the next morning that my thoughts would have flowed so much more smoothly had we been typing back and forth to each other...

Thank goodness for Blogger!

And because the first couple paragraphs really have nothing to do with my post...thank goodness for digression!

What I want to share with you today is an extension of that conversation.  The running theme throughout our late night chatter, was "empathy."  The next morning I woke up and read this article by Michael Hoskins on Diabetes Mine...You can read it HERE...please come back.  :)

The articles title is "At least you have diabetes and not..."  Mike shares his story of his Aunt recently being diagnosed with ALS.  He shares how this has changed his perspective, and in the grand scope of things realizes that diabetes is not that big of a deal.  He is feeling at this moment that all the DOC chatter online is mostly insignificant.  And that now he sees that there are much more dire circumstances being experienced by people all around the world.  (Paraphrasing...please read the article to really get the gist.)

So is it fair to say this disease is harder than that disease?  Are we comparing apples to oranges, or perhaps fuji apples to gravenstein apples?

Personally, I don't think comparing will get us anywhere.  Understanding, on the other hand...will get us far.  And empathy will take our planet all the way to where it needs to go.

After Ryan was diagnosed I will be honest, there was a length of time I would read statuses on Facebook and say, "Really?  Really?  Your devastated because your child was high for three hours?"   But let me tell you this...five months later, I'm right there with you posting these statuses too.  Diabetes is hard and frustrating.  Is it fair to diminish that frustration because you, or your child probably aren't going to die today?

My opinion...no.

Ryan's cancer is hard.  Yes it is harder than diabetes.  Yes it is awful and horrible and it feels like my world is crumbling down...but without the DOC chatter I would most certainly be in a darker place.  Not only to keep my mind off it all, but to give me that support of "same."  To make me feel like I'm part of something.  I can sit here, on my couch all alone...and not feel alone at all.  And the best part is, these relationships are REAL.  I've met MANY people.  I've spoken on the phone with MANY people.  I've had private chats with MANY people.  These connections are vital.  My boys A1C's are what they are BECAUSE of these connections.  They are healthier because of the DOC. 

Yes, I would pick diabetes over cancer any day of the week.  But we don't get to pick our diseases.  The disease pick us.

All we can do is make of it what we can.  And what I see is thousands, hundreds of thousands of people online with diabetes, making a difference in each other's lives.  Attending conferences and events to make a difference for their own family, and the community as a whole.  Diabetes is our thing.  We were giving this cause, and it is just as admirable to chat about diabetes as it is about cancer.  If your cause is for the greater good, it is always worthwhile.

It will often get said to me, "I feel bad when I am overwhelmed because I ONLY have one child with Type 1 Diabetes, or I only have to take care of myself and MY Type 1 Diabetes...and you have three...so I feel silly I feel that way."

What these people forget is that I once "just" had one child with Type 1 Diabetes.  And I was overwhelmed and scared, and exhausted all the time too.  Diabetes is HARD, no matter which way you slice it.  It adds a second hamster wheel to your brain...you can rarely NOT think about it.  Please, whatever you are facing at this time, know that your feelings are valid...and then find a way to come to terms with them.

We need to have empathy for the entire human experience.  It is good Mike wrote that article if only to open our minds that others are suffering too.  My bestie who stayed with me this weekend?  Her Mother...my second mother...died in 2008 of Alzheimer's.  Would I trade our Diabetes journey for her Alzheimer's journey?  I think we can all agree that that is a ridiculous question, and at the very least a moot point.  We take what we are given and we run with it.  Sometimes we trip with it.  Sometimes we are paralyzed with it.  But it is OUR journey for a reason.  Grab it by the horns and live your best damn life. 

Heaven knows I am trying.

Although a widened perspective is wonderful, and vital...comparing is fruitless. 

Love your best.  Try your best.  Hope your best.  Connect your best. 

Look around and empathize your best.

Make a difference the best way you know how.

In the end, that is the best we can do.

14 years of soaring anyway.

He's 14 years-eight months old, and he has been living with diabetes for 14 years today.

He has been living with it.  And in my own way, I have been living with it.  In his own way, my husband has been living with it.  In everybody's own way, our entire family has been living with it.

Here it is.  A big boring ol' Tuesday.  And today 14 years ago our lives changed in an instant.

Today, there was no parade.  No fancy dinner.  No balloons.  Just a family sitting together on the couch before bedtime taking it all in.

When I brought it up, everyone became very quiet.  There was a solemn respect emanating from all the boys.   They weren't sad, they weren't cheering...they were simply contemplative of it all.

"How does it make you feel J?"

"Special."  Said with the sly smirk only a 14 year old could muster.

We went through a few things that I had saved in J's keepsake box.

The hospital gown they gave to J when he was admitted.  It was the smallest they had and he swam in it. 

J's very first Medic Alert bracelet.  The picture below just doesn't capture how completely small it is.

J's first glucometer.  The rubber bear that gripped it was his teething toy for many months.

And pictures of J on our vacation just a few days before he went into DKA. 

We all hugged each other a little tighter before the boys went off to bed.  We know how lucky we are that J made it through the entire ordeal.  I remember on his first birthday bursting with happiness that we got to celebrate it!  It was a party of epic proportions.  He is so loved.

And 14 years later, he's all ready to get his permit soon.  He is entering High School in just weeks.  And he is every bit as strong and resilient as he was that day so many years ago.   I wish I could convey how proud I am of him...words fail me.

So here's to J.  As well as all my boys, and all of the children, teens and adults that live anyway.  Soar anyway.  Succeed anyway. 

Inspirations.  Every one.

And especially today...this one.  My one. 

Love you J!

Apricot Advocacy

It's almost time for Back to School.  I love summer, and I love school.

What I don't love is going BACK to school.

For parents of children with diabetes, going back to school means advocating...which at its core is a really amazing thing.  

On the surface though, it is a super delicate thing at best. 

Kind of like an apricot.

In our hearts we have all the right intentions.  We want our children to go to school with a plan in place.  With safety measures signed off on, and with a staff that is trained to keep a watchful eye on our little ones. 

We want our kids to be safe.  Sounds like a completely admirable goal...right?

Sounds hard and true...just like an apricot pit. 

But when we go into the office and speak with the administrators our resolve becomes a delicate thing.  We have to handle it all very gently or else we will bruise and discolor the apricot flesh of our advocacy.

We don't want to be viewed as vigilantes.

We don't' want to be seen as trouble makers.

We don't want to be perceived to be tiger parents.

Because once those perceptions start getting thrown around...we aren't getting anywhere.

There is nothing worse than having the school administration on the defensive.

The hardest part for me personally is feeling as though I am being judged as a pancreas by people who were taught what diabetes is by Wilford Brimely and Doctor Oz.  I'm coming in there giving them an entire new perspective on what Type 1 Diabetes really entails.  I'm telling them things they never dreamed of.  And at the end of the day I wonder if they think I'm nuts.

The people at the school have only ever seen magazine pictures with the number 103 on it.  They think a 300 is neglect.  They think constant lows after recess is bad pancreating on my part.  Or do they?  Even though I feel like I'm doing a pretty good job, I get all kinds of vulnerable and self conscious when school starts.  They might not even think those things at all!  They have a ton of other things to think about anyway...their jobs are already hard as it is without my family in the picture!

My biggest problem is my perceptions of how people at school perceive me.  (That's a real sentence, right?)  I've so many times wanted our endo to call up the school or teacher and say, "You know what...Meri is a dang good pancreas.  The back to school yo yo is not her fault.  She'll figure it out in a few weeks...cut her some slack."

I am so hard on myself when the kids go back to school.  We don't have a nurse, so often the littles' teachers want to know where their blood sugars are at so they can know how to help them.  And when they call me all kinds of shocked that there is a 225 staring back at them...it's hard not to feel judged.

I am fully aware it is all about educating...over and over and over again.  Eventually they all get it.  Eventually they come to see what Type 1 Diabetes is really all about.

It's just the beginning of forging new relationships and teaching them the ropes...it isn't easy.

I have my binders.

I have my 504's.

I have my boxes full of supplies and fast acting sugar.

What I don't have is the magic button that lets everyone see what I see.

I see four boys, three with T1, that at THIS time, and at THIS moment mean more to me than they ever have.  More than all the riches of the world and all the castles in heaven.   How do I love them MORE every day?  I love them so much today, it seems impossible!

I see three T1 Boys that are amazing in a million different ways.  They are more responsible and in tune to their health than anyone else I know.   Amazing boys who just want to fit in and do everything everyone else does.  Amazing boys who always TRY their best when it comes to diabetes.

I see a mother that tries her very best to keep their numbers as even as insulin-ly possible.  A mother whose heart aches with every high and every low.  

I see a family that needs an easy back to school...and I'm bawling like a baby thinking about it.

It's hard to hold a delicate, very ripened apricot in your hand while crying.  It's so easy to bruise.  Emotions can take over and make a mess of everything.

Squished apricot...not cool.

I know that we will survive.  I know that we can do this.  I know that most of the success hinges on keeping my emotions in check and not guessing what others are thinking of me.

I know back to school is a necessary evil. 

But with the possibility of my littles having teachers we never had before, and  J starting High School as a Freshman...

I just wish I was holding an apple, and not an apricot.

Facebook Friday Sandwich

Wherein I smoosh today's goings on between some Facebook postings of late.

Facebook Friday?

Is there such a thing? 

I feel like I live a double life online.  I have my life here on my blog, and I have my life over there on Facebook.  Here there are just small, (very emotional,) snapshots of my life.  Generally written in the wee hours of the morning...like now.  On Facebook I'm able to share more about the little things that light up my life.

(And by little things...I mean my boys.)

Take this morning's status for instance:

I ask the boys to check their sugars before breakfast. J: "78! I win!" B: "No! I'm 111, that is closer to 100...I win!" L: "I'm 132! I win, I have the high score!" Could they be any more awesome?

That, my friends, is a true story.  I laughed all morning thinking of L's "high score."

Earlier in the week I had the pleasure of experiencing this little gem:

Our change jar was full so the boys are sorting the coins. B found me to excitedly exclaim he found "THE most AWESOME penny!" He said it was from "The year of the PARTY!" What year is that? 1999.

He's 10 and he is referencing Prince.

Parenting. win.

And another one on perspective:

Happiness is: Our 8 year old and 10 year old making a box cake on their own, and the three T1's after dinner/pre-cake blood sugars yeilding 101, 105 and 122. (I'm pretty sure paradise would be those same blood sugar #'s before bed, post-cake. I'm not holding my breath though...)

A friend commented that she thought it was great that paradise still included a life with T1.  That really got my swelly brained wheels turning.  I can't help but feel we do live in our own version of paradise.  My boys are so great.  No.  Really...amazing.  With Ryan being out of commission , they are taking on a tremendous amount of responsibility around the house.  I saw grief on M's face for the first time yesterday when I sent him out on errand number 4 for us.  Honestly, that is the first time I have EVER seen it.  They water the garden, do the yard work and all the heavy lifting with a smile.

Blessed.  I am so blessed.

As crazy as things are, our days go by as normally as they can be.  Today J and M left for Weblos Camp to be councilors.  J's blood sugar 5 minutes before leaving was 62 with 1.6 on board.  My good friend Worry came to stay with me for awhile, and then I made the decision to kick Worry out on his sorry arse.   I know  J will be ok.  If the past is any indicator, he'll rock this weekend for sure.

Now one would think that with JUST two littles around, I would be in hog heaven.  I mean...I should have a handle on all of this "diabetes stuff."  I've cut the ratio down a full 1/3 for crying out loud!

I took these pictures today.  Look at these faces! 

They were both SO excited to sleep in their older brothers' beds tonight. 

SO MUCH FUN!

 But alas.  My 10pm check yielded two unsightly numbers.  76 and 52.  With IOB no less.

I had to interrupt the boys' blissful sleep to feed them some snacks. 

When I was gently forcing some juice into L, (I can TOTALLY gently force!,) he became alert only for a few seconds to look at me as though he just received an epiphany from the angels..."You know what mom?  I LOVE pudding.  ((Snore))"

"You know what,"  I told him..."I LOVE pudding, too." (Said while he snored.)

The highlight of that moment had to be I wasn't clinging to dear life to the side of his usual sleeping spot:  The top bunk.  It was so nice to just sit next to him and "gently force" him to drink and eat.

The picture below was posted on facebook a couple weeks ago.  Those with T1 children who sleep on the top bunk will appreciate it most:

How lucky am I that my life is bursting with these moments??  Tonight , and every night, I'm thankful for our four boys.  Their honesty and their hilarious sense of humor remind us not to take everything so seriously.  

It isn't easy being a Schuhmacher, but it's so worth it.