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.