No D, but a lot of M

There is something about him that is just good.  He was born this way, and I'm sure his father's genes have a lot to do with it.

M was a colicky baby.  We spent many hours walking and bouncing trying to keep him happy.  But once he hit one year old, his sweet spirit instantly shown.

 

He has never been mean spirited.  He's never been one to push back.  He's never understood teasing...it just has never been funny to him.

All he's ever wanted is to make people happy, and most especially, make people laugh.

With his innocence and naivety it was hard to get the other kids to laugh. He never made jokes at other peoples expense, and that is what little boys like to do best.  They didn't think he was very funny.  At seven years old, his jokes were juvenile...(although totally age appropriate,) but children those days/these days gain a bit of street smarts early on from their siblings.  M, being the oldest, never had the benefit of an older brother to educate/tarnish his innocence.

Instead he had two very young parents who adored him and laughed at everything he said.  He would walk into a room and they would applaud, because to them, he was perfect and charming in every way.

I think back to that little boy who struggled in his early elementary school years and marvel at what he has become today.

M, if anything...is an entertainer.

He found music in 5th grade.  He started with the clarinet, because my mother had my sister's in the closet.  He instantly connected with the music and soon wanted to take private lessons to play songs more complicated than Mary had a Little Lamb.  In the final concert in 6th grade M played a solo of the Mission Impossible theme song.  It was epic.  It was one of those movie moments where the entire crowd jumped to their feet and applauded in awe.  He was amazing...and happier in that moment than ever in his entire life.  In the talent show a few weeks later he played again, and was such a driving force in the show he received a school spirit award that had been on hiatus for many years.  He was so wonderful they resurrected it, and put a name on a plaque in his honor. 

In Jr. High his Omi bought him a Saxophone, and the rest is history.  He is now in the Varsity Jazz band and plays first chair.  He's pretty amazing.  He has such beautiful tone, and so fun to listen to.

A few years ago Ryan took a volunteer job as cook at the Weblos scout camp.  All the boys have gone with him every year to volunteer as staff.  It was there M was able to show his true colors.  His kindness and camaraderie with the other campers was a breath of fresh air, but more than that...they had a stage...and M began his legacy as an amazing comedic performer.  He is SO funny.  The audience is brought to tears by his jokes and skits, and I am brought to tears that my little boy who always wanted to make other kids laugh, is now doing it on such a big stage.

This weekend he volunteered at a band camp as a mentor.  On Facebook I was able to watch my son sing and make the audience roar with laughter.  The video was taken from behind and you couldn't see his face, but at the very end he turned around and had the greatest look of joy.  I was never more proud of him.  Not because he was good, but because he never gave up on what he wanted to do.  He is finding his path, and it is all him.

Last year when M sat Ryan and I down to tell us he wanted to find a career in film, we were a bit unconvinced, and completely nervous for him.  Why not become an engineer, or a dentist?  But as he explained he doesn't want to be in front of the camera, but rather behind the scenes editing film, our hearts began to soften to the idea.  M has no problem letting others take the limelight.  If he is part of the smile in any way...he is happy. This year he began taking a film class and he is in love.  He spends his breaks editing film, he finished his first project weeks before it was due, (and if you know my procrastinator M, then you know what a big deal that is.)  Ryan and I both know that making a living at something you love to do is best.  Ryan loved being a baker, and later working with other bakers selling them supplies and helping them run product...I know he wants the same thing for his boys.

I can't tell you that M won't change his mind.  But I can tell you that I see him in the future finding ways to make other people smile.  If he does anything in life...it will be that.  Whether he is working with film, being a teacher, a plumber, or a rocket scientist.

He is still the same soft hearted little boy, but these days he glows with happiness.  He walks around the house humming jazz tunes and has the biggest, best smile.  Both his first and second grade teachers told me that they thought he was going to be an amazing father when he grew up.  What a peculiar thing to say about such a young boy, but looking back, it makes perfect sense.

He IS going to be an amazing husband and father one day.  My greatest prayer is that he finds someone with a heart as big as his...and more than anything...someone that will laugh at his jokes, and make him feel like the star that he is.

I am so proud of the man he has become.  17 and a half is a pretty big number...being in his Senior year is a pretty big deal.  His future isn't written out, but all I see ahead for him is exciting and wonderful. 

I might be biased, but what else do you expect from one of his biggest fans?  I say, "one of," because his father shares that title with me.  Ryan always marveled at what a great kid M was.  How did we get so lucky? 

I suspect that M took the best traits from both of us, and mixed them up into a magic potion of happy goodness.

Watch out world.

He's coming.

A video homage to Ryan

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A post from Ryan.

Going through my emails, I found this blog post that Ryan sent me.  It was written 10 days before he passed away.  I didn't post it then because he wanted to double check he got the names right, and wanted to make sure he mentioned everyone he met...he didn't want to leave anyone out.  Well, things got a bit busy and real...his changes never happened.  So here is his post, unedited.  A little bit of Ryan to brighten your Tuesday:

 

Ok, I think I get it.  It’s addicting.  I haven’t stopped thinking about blogging since I wrote my first official blog to the world.  Well it kinda helped that I caused quite a stir by misspelling Big Kahuna Fred C-U-N-H-A or that fact I combined all the Scotts with Michael Hoskins. I had not realized the satisfaction you can get by getting something off your chest and connecting with another person who you don’t even know, and who lives heavens knows where.  I think this is partly why my wife blogs………..Wow!  I’m a fricken genius.  It only took me 3 years to figure this out!!!

   It got me thinking why don’t I blog more often?  My first attempt was somewhat successful.  So I sat on this for a while and realized why I was shy to jump in again.....to me my wife is a blogging genius.  I get her blog emailed to me.  I open it and start reading and crying automatically.  Am I a wuss?  I don’t think so. She just touches my heart because we think the same way.  I think my main concern is I'm a little intimidated blogging as I'm living with a blogging legend. That would be like Gordon Ramsey's wife cooking a gourmet meal. Yea she can do it, but you know in the back of his mind he's thinking should have added a bit more salt....coulda' have seared it a bit more.....should have broiled instead of baked. But instead he eats and smiles and says "Baby, I could serve this in my one of my restaurants."

    I wanted to share some thoughts from FFL.  We had a challenging time there.  My 14 year old, J, started getting sick already on the plane flight to Florida.  At one point Meri was running down one of the organizers, Jeff, asking his help to get him to urgent care.  They spent several hours there, handed a prescription and went back to the hotel.  We spent the next few days attending classes and enjoying meeting people.  Joe Solo greeted my oldest son, M, and he immediately rattled off his first impression of M's personality (which he nailed, and in the process made M feel really great.)  We also attended his class, which we thoroughly enjoyed.  We also attended a class from Dr Richard Rubins, I got there early and was sitting by myself.  He walked right up to me introduced himself and made me feel like we had been friends for a long time.  We seemed to have a lot in common and there was an instant connection.  His class “Diabetes Overwhelmness” was something I could totally connect with.  He stopped me later on in the hallway to give me his card and said to keep in touch.  Scott Johnson couldn’t have been nicer.  Introduced me to the one of the founders of FFL and made sure to say hi to me every time he saw me.  He made me feel very welcome.  My 2 littles, B and L, enjoyed Leanne Thill's recycled diabetes supply art center.

   On the third night a gaggle of Mother Bloggers got together at the pool with their families.  It was sorta like a family reunion.  At that point I started to feel bad.  As most of you know, I’ve been battling my own health issues.  I was sitting near the pool and the left half of my body, from my face to my toes heated up to the point where my eye was so irritated I could hardly keep it open.  My dad had a stroke at 55 and I was thinking I beat him by 14 years.  I felt worse for the fact I walked away like from the reunion and didn’t say a thing.  I didn’t want to spoil the fun.  That night I was lying in bed and I felt a scary amount of pain in my kidney area.  I told Meri to call for the ambulance, as I was getting ready to throw up from the pain.  She called the front desk and they said there was a town car waiting in the front of the hotel.  I spent several hours with no sign of a doctor then this nurse couldn’t take it anymore and gave me a shot of oxycontin and I was asleep and pain free in 15 seconds.  They highly recommended we end our trip and go home…………which we did.  That night we had promised the kids Chick-Fil-A, a big group of bloggers were up for the task of getting our promise delivered.  Another thing that happened is that group of bloggers surrounded my wife in a circle of prayer and love.  The gesture and connection went far beyond a group of bloggers who share a disease.  It was a group of men and women with the faith of Job trying to heal one of their own.

     Couple of more shout outs to people I enjoyed meeting.  Wendy and Jason Rose and family.  Meet them before but LOVE them.  Mom of Bean, AKA Denise, super friendly and always gave me a smile.  Scott Strange and I sat and talked baseball, not sure how that happened but it was really cool.  K2, Kelly Kunik, gave me a “hey I know you don’t know me but I know you and your family and I love your wife.”  Jess, I thank you for great attitude and smiley face.  Sara and Kim, thanks for all the Polynesian sauce and helping us keep our promise to our kids.  Lora, I'm so glad I had a chance to meet you too.

     After all that, we still felt like we had a vacation, and Meri and I plan on coming to the next CWD conference.

 

The last sentence right there is so Ryan.  That is how he lived.  Always with hope.  Always making plans for the future...and I'm glad he did.  Looking ahead to happiness was our way of life.  Ryan would tell the boys there was never an excuse to not do something, or to not do our best...someone always had it harder than us.  He often pointed out how blessed we were, and that WE had the power to make our futures what we wanted them to be.  I hope I can find a way to carry on his bright light, and show the boys there is a way through our fog of grief and pain.  The future is bright...Ryan always said so. 

I honestly have no choice but to walk by faith, and believe him.

Meltdown

Sets.

(Shaking my fist to the universe.)

Sets!

I'm failing...or something.  Poor L has had his sets changed almost every other day lately.  Today...I couldn't get him out of the 300's.  When we got home from my in-laws tonight he reluctantly showed me the 470 that popped up on the screen...

So help me...another set change for my baby.

I asked J to fill the reservoir for me.  He is happy to do it.  He's GOOD at it.  How he can pull that insulin out like butter, I do not know...but in less than a minute's time he had a beautiful fresh full reservoir waiting for me.

I confidently opened a new set and attached the head to the reservoir.  I rewound the pump, and was about to prime the insulin through the tubing when I accidentally pulled the needle out of the set, rather than pulling the rubber safety nub off the needle.  (Good hell, how I did that...there are no words.  Again...I do not know.)  I couldn't safely thread the giant needle back into the set, so...

Ruined.

"Dang it!" I say completely frustrated looking towards the heavens, "THIS IS NOT MY JOB!"

J peaks his head out of his room...thinking my comment is for him.

"I'm not talking to you J...I'm talking to your father."  Said in a way where each word escalated in both sound and crazy inflection.

He's scared.  He knows his mom is about to lose it.  He ducks away quickly.

Starting over.  New set.  Reservoir inserted, the piston in place, I prime the tubing and gently lay the set into the rocket.  As I pull off the sticker I somehow lose control of the entire contraption and drop it on the counter, forcing the set to fold back onto itself and render the sticky part of the set completely useless.

Trying to catch it on the way down, super slo-mo like, the needle in magnificent fashion pierces my finger at the exact right moment and bright red blood runs down my hand.

Tears.

Angry tears.

I haven't been angry yet.  This is new territory for me.  I wasn't angry at Ryan.  I wasn't angry at God.  I was angry that Ryan was gone.  Angry that he wasn't here to make me feel better.  He always could make me feel better.  Hell, just his sweet face peering around the corner could make me feel better.

Anger.  Tears. 

I could barely get the third set ready as I shook and cried inconsolably.  I knew I was upsetting the boys...but the tears rolled fearlessly down my cheeks.  Nothing would stop them...I knew that.

I don't know how I did it but set number three was finished in record time and inserted on oh-so-hesitant L's stomach.

I went to my bedroom and collapsed on my bed.  Angry.  I need my husband.  I NEED him.  How did I ever think I could survive without him?  I can't do it without him!  This is total crap!

And then a knock at the door.  The boys were going to bed and they wanted to know if I would be joining them for family prayer.

I took a few deep breaths and sized myself up in my bathroom mirror.

Red eyed crazy.  It would have to do.

I made my way out to the living room and found everyone ready in a circle on the floor. 

J took my hand and said, "I've got the sets for now on, Mom."

I wanted to say no.  I wanted to tell him it wasn't his job.  But I know it is second nature for him now.  I know he feels it is something he can do to help is mother.  In that moment I knew I had to let him DO something.  I nodded and felt an immediate burst of love for all my boys.  They so want to take care of me.  I don't want them to have extra responsibilities...I want to do it all for them.  But we all have to do more now.  We all have to work together and find our new roles.

It was L's turn to pray tonight.  He prayed for another beautiful day.  He prayed that tomorrow, as the sun shined, we would be able to remember daddy, and smile. 

How could I be angry after that?

How can I be angry when I am blessed with such amazing boys? 

I don't know...I'm sure I'll find a way.  I'm not so far on the crazy side that I don't know my emotions will overfloweth for awhile.  All of them, the good and the bad.

I'm just happy that when they do, I'll know that my boys, and prayer, will always see me through.

Diabetes: Our Security Blanket?

Plunging toilets, killing spiders and changing sets.  Ryan's jobs.

Thankfully when a killer giant spider jumped out at me while making lunches this morning my sister in law jumped in front of me to save the day.  Sets?  J has taken to filling reservoirs for me, and thankfully the toilet hasn't been an issue for me yet.

Ryan was brilliant at changing sets.  We use quick sets, and for the life of me I have no idea where the good "rocket" is.  (We call the R2D2 like serter, the "rocket.")  We have one that fits the set perfectly.  It is a cloudy white on the inside...we've never inserted a wonky set with it yet.  But like I said, it is in a place that probably only Ryan knows so we are left with the bright white insided rocket that is pretty sucky.  Maybe I'm making excuses, but I've inserted THREE bad/kinked sets this week.  One was discovered during the first few minutes of church with the lovely, "No Delivery" alarm.  The other buggers never alarmed and left me to discover them after "HI" came waving back at me from the meter.

Also, blood sugars are all over the map.  Before Ryan passed the boys needed half corrections at night.  The night Ryan passed they immediately started needing twice the insulin at night for corrections.  Then...last week they went back to being sensitive to the insulin...only to now find B the last four nights needs twice the insulin to come down, again.  (Me thinks another growth spurt cometh.  Nighttime basal changes?  Blarg.) 

It's a good indicator how the boys emotions are ebbing and flowing.  B won't leave my side when he comes home from school.  L has often been calling with headaches wanting to be with me after lunch.  The older boys are normaling the best they can, but every once in awhile I see the melancholy on their faces.  They all hug me a lot more.  Intuitively they know that's what their mother needs right now.

Grief is a surreal place to be.  It feels like we are in a foreign country right in our home.  Heightened senses make everything look new and out of place.  We walk in the front door knowing that this is home, yet we cautiously  are waiting for it to feel like home again.

Although fickle and frustrating, diabetes has been a comfortable companion as of late.

The familiar routine that we have, changing sets and checking sugars, brings normalcy to us.   It's one of the only things that doesn't seem foreign these days. 

I can't say I am thankful for diabetes, but diabetes is part of the home that we've left behind.  Don't get me wrong...the nights are killing me.  I need to get those figured out, but something tells me the boys bodies aren't even close to being predictable.   And that's ok, 'cause neither is mine.

I wore eye makeup yesterday to run some errands.   My tear ducts indicated that was a stupid idea right off the bat.

But wearing that make-up, or trying to, was a step forward.  

Changing sets, killing spiders, wearing make-up...putting one foot in front of the other...

That's all we can do.

We are doing our best.  And who can do better than that?

Melancholy

Ryan was home to me.  Right now I'm feeling homeless.  Where do I belong?  The world is turning and I must take my place.  But where?

Our bedroom is the hardest room for me to be in.  I only noticed a few days ago how I avoid going in there.  I use the boys bathroom during the day, instead of my own.  When I go in our room at night it feels sacred.  A giant photo of him leans against the wall from the funeral.  For now, I like it there.  His smile is so genuine...I feel like he's telling me how proud he is that I've gotten through another day.  I pray harder in there.  I cry harder in there.  Everything is rawer in there.

Today was a struggle.  Being in church without him by my side hurts.  I sat at the end of the row feeling naked on my right side.  I told the boys on the way home I need them to sit on either side of me for now on.  They nodded and completely understood.  I'm so lucky to have them.  I was surprised how jealous I was of the husbands with their hands around their wives.  I miss his embrace.  I miss felling his fingers around mine. 

I miss HIM.

I am thankful for the knowledge that we'll be together again one day, but my heart breaks thinking how long it will be until we hold each other.  Too long.  Just waiting one more day seems too long.

Thank goodness for my boys.  They are why I get up in the morning.  As difficult as it is waking up only to realize this is all real, as soon as I walk out of my room and see them...I'm OK...or at least better.

B announced yesterday that he wants to start playing baseball.  Today I was outside playing catch with him...fumbling with the ball, trying to remember the correct way to throw it.  The correct way to catch a ball?  I'm not sure I'm teaching him correctly.  Ryan was always waiting for one of his boys to show interest in baseball, and now here B is ready to embrace it and he has only an inept mother to coach him through. 

The leaves are changing and I'm not sure how I feel about that.  Seasons are rolling on, time is moving forward while our family sits static in our grief.  We try to normal through our days, keeping busy is our best defense against the tears.  When the boys are around their cousins or their friends, they are alive.  They laugh.  They are kids.  My heart sings when I hear them laugh together.

I guess the best word for this stage is melancholy.   I'm lonely without him.  Lost.  Homeless.  We spent every day together,  practically every lunch together.  When you and the love of your life are inseparable, and then you are alone...melancholy.  That is the only word.

It is completely overwhelming knowing I am responsible for the boys wellbeing...emotionally, physically, financially.  Failing them is not an option.  But here I am wondering how I will make a living.  I need to jump in...but where to start?  Call me.  I'm for sale.

Despite all the melancholy, I have an overwhelming sense of predetermination.  Something is waiting for me out there.  Something.   Seems completely unfathomable, but at the same time I am certain there is a path I am supposed to walk now...I just feel it.  I only wish someone would physically take my hand and show me the way.

The question marks are the worst.  The question marks and missing him. 

Faith isn't always the easiest road, but I can't image traveling by any other.  Where would I be without the hope for a better day?  My brain tells me there is happiness to be found ahead...my heart is not sure.  All I know is I have no choice but to move forward.

One day at a time.

One hour at a time.

Sometimes...one minute at a time.

One step at a time.

The world won't stop for me, so I will move forward, working diligently to find my place again. 

And hope that somehow, the place I find will feel like home.

Episode 1.

As most of you know, J was diagnosed with Type 1 Diabetes at the tender age of 8 months.  When he was diagnosed the doctor told me it was her goal to keep him out of DKA, and keep him alive.

We achieved that goal...but more than that, we achieved 14 years without a low "incident."  By incident I mean J has never passed out.  He has never had a seizure.  He has never gotten loopy, or lost time.  The worse symptom he ever had was some sweating.   I can count on one hand how many lows he has had under 50.  We've been blessed for sure.

So yesterday was shockaprising to say the least.

I got a call on my cell phone.  This is what I heard on the other end...verbatim. 

"Hello, Mrs. Schuhmacher?  This is blah blah blah blah from the High School.  I think we met in a 504 meeting last week?"

Me:  "No.  That wasn't me.  I haven't been called for a 504 meeting yet.  I'm sorry, who is this again?"

"Oh sorry, must have been another student.  Anyway...I wanted to let you know that your son just had a diabetic 'episode' in PE."

"Are you sure you have the right parent?  Are we talking about J?"

"Yes, J."

 

Images of ambulances, seizures, red flurries of panic flash through my head...

"Is he  Ok?  Please, is he ok?"

"Yes.  He is fine now.  But the PE teacher had to leave the entire class to retrieve sugar for him. That isn't ideal."

Me, angry that his most pressing concern seemed to be the teacher leaving the class:  "Leaving the class to save my son's life seems ideal to me.  He usually has sugar in his spibelt, but we washed it last night and we must have forgotten to replenish the sugar inside.  Can I speak to him, please?"

Turns out J had just ran a mile loop outside the high school.  When he returned to the field they were just about to play some ultimate Frisbee when he began seeing spots.  Within seconds he couldn't see and his knees were buckling under him.  Fortunately his PE teacher was nearby and immediately knew what was happening.  Barely conscious, J was able to slur out, "I need sugar.  NOW."

The PE teacher actually had two TA's there to assist.  One stayed with J, and the other stayed with the class.  The teacher first ran and got J some apple juice and glucose tabs.  After J ate that the teacher ran back to the locker room and retrieved J's backpack with his meter inside.

After he was full of sugar for a good 15 minutes the number that popped up was 70.

The principal was called and came to pick J up on a golf cart to bring him to his office.  J explained to him that nothing like this has EVER happened before.  And then he called me.

I am so very thankful J's teacher knew what to do, but I am livid...at myself.  I completely take all of the blame.  Wait...stop shaking your head at your computer!  It really is my fault.  I got comfortable.  J always feels his lows way before any symptoms pop up.  He has never had an "episode."  I thought keeping his meter in the locker room was OK. 

It is not OK.

 

My 14 year old son who hasn't taken a nap in 12 years came home and slept soundly with his feet on my lap for two hours.  His body took all evening to recover.  Looking at his precious face while he slept, I recommitted to fiercely taking care of him.  He is almost 15 now.  I've let him fly...and that is how it should be.  But he still needs me...and that is something I don't take lightly.  He and his brothers are my air.  Now more than ever...I need them to be safe, and happy.

 

So a plan has been hatched.  J is going to keep a small, soft red cooler with him during PE, complete with meter and low supplies.  He can't run with it, so it might be that he won't be allowed to run off campus anymore.  Unless he keeps his spibelt full of the things he needs.  Even though PE is right after lunch...he needs to check his sugar before class starts.  These are all things that he should have been doing from the get go.  He did them in Jr. High...I don't know why I thought he wouldn't need to do it in high school.

Please, learn from my mistakes.  Don't get complacent with diabetes.  Just because something hasn't happened, doesn't mean it won't ever happen.  Being prepared is our only ammunition against this unpredictable disease.  If we are prepared, then we can lower the worry meter a few notches.

These past couple weeks the boys sugars have skyrocketed.  Grief and diabetes don't mix well.  We've adjusted ratios a bit and the numbers have been much better the past couple days.  But, as it always is with Diabetes...we just never know when the tide will turn. 

If anything, I have to give the Boy Scouts of America some props.  When they utter their motto they take it seriously...and now I have a wicked reminder that I must too: 

"Be prepared."  

He promised

He promised that everything would be ok.

People make promises every day, and often they do so without taking any stock in what the word really means.    Ryan on the other hand, when he  promised something...it was set in stone.

Early in our relationship I remember driving to his parents house one evening.  He was telling me some fantastic story about work that morning and I was in a fit of giggles saying, "You did not!"  "That did NOT happen!"  At a stop light he looked me squarely in the eye and said, "I promise.  When I promise you something it is very sacred to me.  I only say those words when I am 100% telling the truth."  And looking into his soft eyes, I believed him 100%.  I took his lead and promised him back the same thing.

Soon after, we would try to trick each other by using a "B" instead of a "P."  "Bromise" was our inside joke when we couldn't promise but we really wanted to. 

Last week, the day before Ryan passed he looked me in the eye again and said, "I promise, no matter what, everything will be OK."

And that is why I had no idea he would pass on Sunday.  His promises meant something.  I wasn't worrying about the worst.  But even after death his words ring in my ears, "I promise, no matter what, everything will be OK."

He hasn't lied to me yet.

His service was overwhelming to say the least.  Mostly because of the love that people had for him.  My right shoulder is in serious pain, all the way down to my elbow from being hugged more sincerely by more people than ever in my entire life.  Ryan was a big believer in bear hugs.  Every hug I felt was given from him.

If I told you how many people mobilized to make his funeral happen, you wouldn't believe it.  Our church community, the diabetes community, our school community, Ryan's bakery customers...everyone had a hand in making the day absolutely beautiful.  The church has never been that full.  I'm humbled by everyone's willingness to serve our family.  I'll never be able to repay the debt, although I hope one day to pay it forward in meaningful ways.

It was a perfect tribute to a man who was practically perfect in every way.  And best of all, I knew Ryan was there with me...with all of us.

He hated funerals, but without a doubt, Ryan approved of this one. 

As hard as Saturday was, as it has always been in my life...love prevailed.  I am encircled by love from my church friends.  I am enveloped in love from the people who loved Ryan most.  And I am embraced with an overwhelming love from the DOC.  My facebook page has lit up like a Christmas tree with letters, songs and words of hope.  Each message has pierced my heart.  I can physically FEEL the love jumping off the page for our family.  I'll never be able to thank you enough for softening my heart, and especially for making me feel like I'm not alone in all of this.  The donations our family has received is humbling to say the least.  I know many families sacrificed to donate that money.  Your kindnesses are not unnoticed.  In fact, they help me breathe. 

I have faith that everything will be ok.  Doesn't mean I'm not scared.  Doesn't mean I don't throw up every morning taking in the enormity of it all...it just means that I'll continue to walk in faith, knowing that my Heavenly Father, and my angel Ryan will pave the path ahead for our family.

Somehow we'll get through this. 

He promised.  And as always, I believe him.

Aching

I wasn't expecting it. 

Looking back it should have been more clear to me what was happening, but in the moment...I was just coping with him.  Loving him.

How everything happened last Sunday is so personal I can't write it down here, but I can tell you that without a doubt...we received our miracle.

I sit here completely humbled, and shocked.  How God got away with this without me cursing him is the monumental miracle itself.  Each detail of the last week was carefully seeded so that on the other side I could not deny this timeline was always set.  It just wasn't for me to foresee.

My body is barely hanging on.  I am so weak, and tired, and aching.  I ache everywhere.  But my brain is working overtime...leaning on the muscle mass it has gained the last few months.

I wish I could turn it off.  I wish I could flip a switch and give my body a break from feeling it all.

I wish I could know exactly what to do for the boys, and what to say.  I hate guessing my way through something so important.  They are my number one priority right now. 

He fought the fight so valiantly.  Last night as I was staring at the wall trying to convince my brain to sleep, I realized that not once did Ryan ever complain.  He never questioned why this was happening to him.  He was only always positive.  Hope was the only option in this house...it was how he lived.  Finding the joy in the little things was his legacy, and looking back I do not regret one minute of our journey.

I hope one day to be able to follow his lead and live with the assurance that all will be well.  Today that seems impossible.  Nothing is well.  Saying I miss him is not even close to the pain that I feel.  He was my everything.  My favorite.  The love of my life.  My best friend.  He got my sense of humor.  He never judged me.  For the past 20 years we did everything together...our hobby was each other.

Writing things out is my best therapy.  Letting it out and knowing my feelings are there to look back on help me get through.  I don't know how long it will take me to navigate this road I'm on...maybe forever...but I will continue to come here and lay it all out.

It is my way.

I hope that it will help me get through this day.  And then tomorrow I'll figure out a way to get through that one too.

Thank you for raining down love and support to me and my beautiful boys.  Thank you for your tears, and for being my friend.

I don't know that I can do this.  I'm completely scared out of my mind.  But I know that Ryan knows I can do this, and that gives me the hopeful inkling that maybe, just maybe...I will. 

My love

Ryan passed away Sunday morning, peacefully, in the arms of his family.  Our miracle came to pass as he did not suffer.  He worked, he loved, he laughed, until the very end.  He will forever and always be my miracle, my precious love...our angel.  Although not the way I had hoped, my greatest prayer has been answered.  He is forever free of his cancer.

Ryan

This is Ryan six months ago...just one week after he was diagnosed. He doesn't look like this anymore. The radiation, the steroids and the cancer itself has done a number on his body. But, his eyes remain the same. That is what I fell in love with, his smiling eyes. Please pray for my husband. Please pray for the father of my four boys. Especially today. He is almost to the point where he cannot walk. We need your mighty prayers to lift his spirits, and if it is God's will...to provide the miracle we so desperately yearn for.

Bless each of you for being such a wonderful support to me, and my family.

  

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.