Friday, June 28, 2013

I miss him.


“For in grief nothing 'stays put.' One keeps on emerging from a phase, but it always recurs. Round and round. Everything repeats. Am I going in circles, or dare I hope I am on a spiral?

But if a spiral, am I going up or down it?

How often -- will it be for always? -- how often will the vast emptiness astonish me like a complete novelty and make me say, "I never realized my loss till this moment"? The same leg is cut off time after time.” 

― C.S. Lewis, A Grief Observed


I miss him. 

Sometimes when I am typing at my keyboard I look over to his spot on the couch.  It is so jarringly vacant, it always shakes me.  I see him perfectly, sitting there…with his feet up, his laptop perched on his lap, one hand on the remote and the other to his cheek, talking to customers on his cell phone.

But, he isn’t there.

I miss him.

Sometimes a song comes on the radio and it is one that meant something to us, and I naturally begin singing along with him.  I imagine his hand on mine.  I imagine his smiling eyes, and his body gently rocking back and forth to the beat.

Except he isn’t there.

I miss him.

When I pass by a picture of him I can’t help but trace his face with my finger, like somehow I’ll feel him physically.

But I can’t, really…even though I try.

I miss him.

I still sleep on my side of the bed.  Maybe I’ve moved my head towards the middle a bit, but my body stays on my side.  The other side is his.

Even though he isn’t here.  It’s his.

I miss him.

Sometimes he talks to me.  It isn’t something I hear, but something that seems to just pop up in my thoughts.  Like he is speaking to me telepathically.  He’s always telling me it’s going to be ok.

I’m waiting.

I miss him.

Other times it feels like my soul is pounding against my chest, reaching up to him.  Trying to find him.  There is an urgency about it…a complete stubbornness.  Like it doesn’t have time to wait.  It needs him now.

But I’ll wait anyway.

Though it makes me miss him all the more.

Sometimes the kids will smile a certain way, or say something Ryan would have said.  They all hold giant pieces of him, and it’s hard not to hear him in their voice, or see him in their gait. 

I wish he were here to see just how much they are like him.

I miss him.

It’s like I’m orbiting grief.  Sometimes I’m closer to it, and sometimes I am farther away, but it is always there, stinging my eyes.  Its gravity is what tells me I’m alive…the sadness is testament to my humanity. 

The emotions are a deck of cards in front of me; I seem to pick them blindly each morning.  Will I be angry?  Will I be lost?  Will I be hopeful?  I never know.

I just know I miss him.  That is one thing that stays the same day after day.

I miss him.

I miss him.

Can I just scream that I miss him?

If only it would bring him back.  I would.   There is the push of wanting to wail for him, and the pull of knowing it won’t change anything.  So I go through my day stagnate, with no real inspiration.  Why is showering so important now?  I showered to look good for him.  But I do it…it’s a job now.  Family dinners?  I made those dinners for him.  But I still make them, I know family dinners are even more important now…but still…it seems like a job.  A clean house is the same thing.  A big fat job.

I know I won’t feel like this forever.  But this is where I am today.  I’ve made my way round again in my orbit, closer to the grief, and for however long it takes, I will endure.  I must endure.  I have days that I feel good.  I can smile at his picture.  I can laugh at the songs we loved.  I can feel the sun on my face and actually enjoy it…but those days are the lesser days.

I’ll keep going forward until they are the greater ones.

I miss him.


Monday, June 24, 2013

To the newbies.

I got an email a week ago from a mother whose son was just diagnosed.  Her words were amplified by her aching heart and I scarcly could internalize the emotions within.  I have since been battling my own eternal round of grief so I was unable to respond right away.  This afternoon my thoughts returned to her, and I knew I must write back without delay.

I'm sorry it took me so long to get back to you my new, dear friend.  This letter is for you, and for all the other families that have recently been thrown into the fray, and to the ones that will be.


Dear Newbie,

I’m sorry.  I hate that you are hurting.  I hate that I know you are suffering through the death of a life hoped for.  I know your heart doesn’t know what to do with the worry right now, and the wonder for the days ahead are at times, too much to take in. 

I know you try not to think farther ahead than today, but I also know your mind wanders anyway…wanders to a hazy future with no solid lines.  One that you can only guess at.  You are mourning your child’s old life.

And I want you to know…it’s ok.  It is all part of the process.  Let those tears fall, but while you do, don’t let your hope fall too.

Take your hope and hide it away.  Hide it until you have the courage to take it out of the box and let it become a guiding force in your life.  Until then, it’s ok to be a little lost.  It will take time to settle into this new world.  Each step is a new adventure, but you will become an able captain to this new life soon enough.

From a parent that has been there, (three times,) I can make you two promises.

One) Your child will surprise you.

Two) Your child’s future will be just as bright.

All is well.  Lean into the love you have for your child.  Lean into your family.   Lean into this life knowing that others have traveled before you, and have made it to the other side.

Sure, the other side still has worry.  The difference is the experience behind the worry that tells us things will work out.  You are building on that experience now.  Each day is a fence post that will hold your life together in the future.  Fence posts are notoriously hard to line up…but the time you take engaging in the learning process will be worth it.

We’ve never learned anything worthwhile from the easy things in life.  Hard things are our greatest professors.  Diabetes will bring you battles, and in the end victories that will lay a sure foundation for your happy future.

You are not alone.  Read those words again, YOU ARE NOT ALONE.  Continue to look online for others who are “same.”

You are doing a wonderful job.  How do I know that?  You’re hurt, endurance and unending love for your child is powerful witness to that.

Don’t let the numbers ruin your day.  They aren’t going anywhere…so make it your business to someday make peace with them.  They show you the next step, letting them stab you in the heart will only make for a heart full of holes.

Even still, Diabetes hurts.  I know.

But in a twisted way, it blesses too. 

You’ll find those blessings one day.  That is another promise for you.

Until then, keep soldiering on.  And if you can, don’t do it all alone.  Don’t hide…find your family, or your loved ones and get them involved. 

You can’t do better than your best.  And all that love you have for your child?  It only yields the best.

And on the subject of sleep:  I can’t make any promises there.  But one day your child will grow up, and the hours of sleep will lie before you like a magic carpet ride.  And then you will wish you could keep doing those checks for your child, to take away the burden just a little bit longer.  We are parents.  There is just no winning with this one.

One day at a time new friend!  YOU CAN DO THIS!  I’m cheering for you!

All my love, and understanding,



Monday, June 17, 2013

Pinch Hitter


Pinch Hitter:  (Baseball) To bat in place of a player scheduled to bat, especially when a hit is badly needed.

It was a dark dreary night…

Okay.  It wasn’t.  It was a warm pleasant night, and I was totally exhausted. (cough…understatement…cough)

My inlaws are in Germany…you know, the inlaws who feed us and help me with the kids.  So for the first time ever, I’ve been completely on my own.

Cooking every night?  WHHHHHAAA?  I know.  It’s crazy talk.  But I’ve been doing it.

Folding all my own laundry?  Dishes, cleaning, yard work, birthday parties, swim lessons, camp, driving, walking.   WHHHHHAAA?  I really don’t have a choice.  I’m the only parent in these parts willing to take care of these hooligans.

Working and then entertaining the boys when I get home?  Yup.  I gots to do that too.

So I’m completely exhausted at the end of the day, and last Saturday night was no exception.

Well, except…

I was even more exhausted than usual.  My oldest who is not T1 went out to the beach with his friends and than out to a late late movie the night before.  He wasn’t home until 3:00am, and I was up waiting for him.  The next morning I was up and at at‘em at 6:30am to bring my 15 year old to work.

Needless to say, when 11:00pm rolled around my forehead was on the keyboard.  I couldn’t keep my eyes open to save my life.  Or even my children’s lives as the case may be.

One of my boys was on the low side before bed and I knew he had to be rechecked in an hour.  I knew without a shadow of a doubt: My body could not stay up for that hour.  And I also knew, once I closed my eyes, no alarm clock in the world would wake me.

So as I was locking up the house, I saw my aforementioned 18 year old out of the corner of my eye, typing away on his computer. 

I knew he’d be up for another hour, at least.

I negotiated the facts in my head…he owed me.  Sure I didn’t have to wait up for him…but….

The idea formed in my hazy, tired, swelly brain and before I could think it through I said,  “Hey, M…what would you think if I asked you to test your brothers sugars at midnight?”

“Sure!” He said enthusiastically.

“Ummm…do you even know how to do it?”

“Mom.  THREE of my brothers have diabetes.  Yes.  I can figure it out.”

“But you have to put the strip in like this…”

“I know how to do it.  Go to sleep, I’ll take care of it.”

“But here’s the important part.  You need to wake me up and report back what the numbers are.”

“Done.”

Usually, I open my ipad to facebook and tinker around until I fall asleep.  This night I collapsed face-first into my pillow and fell asleep instantaneously. 

I vaguely remember M waking me up an hour later.  His face was a blur…he was spouting numbers.  I remember trying hard to compute what he was saying to me.  The synapses in my brain were firing like crazy, just not in any way that made sense. 

He could see I wasn’t responding properly as I slurred out a request for him to repeat the numbers.  He then said in a loud, slow tone…as if I was hard of hearing and couldn’t speak English well, “They are all good numbers. You. Can. Go. Back. To…”

And that’s all I heard because I feel asleep.

The next morning when I was lucid I looked back on the monitor history and saw that all the boys numbers were, as he promised, good.

The next night I asked him to do it again.  This idea was gold…I was running with it.

And he happily did.  Except when he woke me I remember nothing he said.  NOTHING.  I only remember that he woke me and repeated what were probably numbers back to me a few times.  A few hours later, it was 4am and I woke with a start.  In my hand I was clasping a piece of paper with three undesirable numbers scratched on it in M’s handwriting.  (Dang Grandma’s chocolate cake!)

I quickly jumped out of bed and tested and treated all three boys.

I asked M about the incident today. 

“Wow mom.  You were totally out of it.  I gave you the paper and you kept mumbling, ‘I got it.  I got it.’  I knew you didn’t, but I was like, OK.  If you say so.”

“Someday I need to teach you to bolus.”

“Why wait.  Teach me now.”

I called all three boys to do their dinnertime check and each was thrilled to have M enter their numbers into their pumps.



They have since been handing their pump to M for all their bolusing needs. 

My evil “Pinch Hitting” plan just might work! 

Can you hear my exhausted maniacal laugh?  Bwa hahahhaha!  Bwa hahahaha!

Yeah.  I need more sleep.


Thursday, June 13, 2013

An open letter to Meri Schuhmacher


Dear Meri,

Hello.  For many months I have lived in your diabetes supply cupboard.  Trust me when I say, I’m intimate with your life.  I know diabetes is a big deal, even though you tell yourself it isn’t.  I know you spend a lot of time calculating, and I know you don’t spend a lot of time sleeping.  I also know that I am part of an army of cannulas that save your boys’ lives daily.  I have been dutifully waiting my turn to lay down my life for one of your boys.  It was an especially proud moment for me yesterday when you choose me.  Surely my Medtronic box glowed a little brighter than the others when your hand reached into the cupboard.  My heart was racing so fast…I was born for that moment!

As you readied me into the rocket for insertion, my mind raced back to the conversation you were having with the boys’ minutes before.  The littlest one had told you his blood sugar was 490.  I heard the buttons beeping as you gave him a giant bolus.  In my guestimation, you retested about 30 minutes later to find him at 103.  A swear word indicated you were not happy with this.  I heard his feet run off to the kitchen when you decided to change his set, and as the fates allowed…you chose me.

It took a lot of guts, but I knew what I needed to do.  If I did what I was made for, I would be providing your son with insulin…yet I had gleaned enough information to know insulin LOWERS blood sugars.  I was shocked.  My duty was to protect your son, and surely more insulin would have made things worse.

So I did what I was born to do...I laid down my life for him.  When you were inserting me into his stomach, I tucked and rolled at the last minute as only my natural cannula instincts dictated.  Being bent in half, I took one for the team…thus resulting in a rise in blood sugars, rather than a deadly drop.

I heard you test him a half hour later, and I heard your sigh of relief.

You’re welcome.

I heard you test him an hour after that, and then again an hour after that.  Both numbers were pleasing, and both numbers caused you to smile widely.

Again, that was all me.

You slept for 5 hours last night and it was all thanks to my quick thinking, and the bravery I had putting my thoughts into action.

So imagine my surprise this morning when you checked your son’s sugar right before running out the door to work, and you muttered that ungrateful swearword under your breath, instead of the thank you I’d been waiting all night for.

No…”Thank you.”

No…”You are the most wonderful cannula ever for letting me sleep!”

No…”You kept my boy from having to eat a mountain of sugar!”

None of that!  You were angry at a stupid 496.

My brothers were at the ready to fix that 496.  I’m just seriously confused as to why you were so upset.  When you pulled off the sticker to find me in a perfect “V” you looked at me in disgust.  Woman, my form was perfect!

And this after I sacrificed everything just for you.

I feel as though my life was wasted. 

If I wasn’t raised with better manners, I might just have a few swear words in reciprocation for you Madam!  Instead I’ll just leave you with my disgust.

Sincerely, and with great nobleness,

The bent cannula you ripped off your youngest son this morning


Tuesday, June 11, 2013

Guilt, yo.


Hey.  You have something on your chin.

Oh, no worries, it’s just a little guilt.  Here’s a tissue.

Guilt: feelings of culpability especially for imagined offenses or from a sense of inadequacy.

These days it seems like I’m bleeding guilt.  Hemorrhaging guilt?  I don’t think there is a band-aid big enough to cover my guilt wound.  I’m working, (Oh, did you hear I was working??,)  which means I’m leaving the boys alone for the first time in forever.  Although my oldest is 18…this is still a completely novel concept in the Schuhmacher house. 

I leave a list of things that need to be done whilst I’m gone, and then I go.

I text and call to keep in touch, “Did you bolus for breakfast?  Did you check your sugar?  Did you brush your teeth?”  (Side note: Apparently teeth brushing doesn’t happen during the summer unless I ask.)

But even though I have the power of the iPhone and its ultra convenient communication methods on my side…things happen while I’m gone.  A hypothetical example might be that I asked a child to put Clorox toilet cleaner in the toilet bowl and let it sit for a half hour and then flush.  A child may have hypothetically taken one of those Clorox toilet-cleaning pucks that are supposed to be put in the BACK of the tank, and thrown that into the toilet bowl, which lodged itself in the crick of the toilet bowl and now won’t let anything through.

Hypothetically.  (My ass.)

Also, when I ask, “Did you bolus for breakfast.”  50% of the time the answer is no.

When did diabetes become no big deal?

Oh, my bad.  That’s my fault, as I try hard to make it no big deal every day.

But am I doing a disservice to the boys?  Should I make it a “bigger” deal?  Obviously bolusing for the food that is going to go into their mouth is important.  One would think that doing the same thing a dozen times a day, every day, would…I don’t know…maybe become a habit?


Excuse me; I just throw up a little guilt in my mouth.

I do see the good side of it all.  My boys need independence.  I was probably smothering them or something with all my love, so it’s for the best, right?

That’s what I told myself until this conversation happened…

“Hi Mom, sorry to call you at work.  Do you know when you’ll be home?”

“In about an hour, I think.  Is everything ok?  Are your brothers being mean to you?”

“No, nothing like that.  Everything is just better when you’re here.”

Crap. 

Also, I wake them up every morning on my way out.  They are so peaceful and sweet laying in their beds, but I can’t fathom leaving without knowing that everyone’s blood sugars are ok, so I prick all three of their fingers and inevitably wake them.  What if one of them was in a coma and I just…went to work??

Be nice.  It could happen.

Oh wait; I think guilt juice is coming out of my eye.

I know that one day we'll look back at this and marvel how we survived this new time in our life.  And see…just the fact that I can say "we’ll look back on this" is proof I know we will survive this.  (See what I did there?)

It’s going to be ok.  (When I type those words out, I believe them.  That's why I type them a lot.)

Until then, we’re having guilt for dinner.  With a little courage on the side.


 
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