Wednesday, August 26, 2015

Miracles accomplished.


There was no humidity in the air that day, just the sweet scent of summer’s end and a cool breeze brushing the hair from my forehead. I was walking briskly; chin up, my eyes scanning the trees and the skyline. In my ears played the familiar tunes that I walked to hundreds of times before. Songs that I'd sent to my new husband while we were dating, and songs he had sent to me. Each one bringing back a memory and causing me to smile wide.

I took a deep breath and reveled in my happiness. How am I here?

It seems like just yesterday I was back in California, eyeball deep in textbooks and sneaking as many walks in as I could so I could talk to Doug. My entire life was in California. I was born there. I grew up there. I died there. I was reborn there.

And I marvel on how I found the courage to be here in Indiana today. I am a creature of habit. I like things my way, and once they are that way, I like them to stay that way…forever. Giving up everything seems like it should be so daunting, but it was never so. It never felt courageous to choose Doug. He was an easy decision to make.

This coming from a woman that has nervous breakdowns just deciding what to make for dinner. Making decisions is never easy for me as I marinate in the fear that I’ll make the wrong one, or let someone down.

I remember after Ryan passed, trying to decide what to do with my life. A daunting decision to say the least. I prayed harder and truer and with more faith than I ever had. What should I do? Should I go back to school? Should I go to a temp agency and try to find a career right out of the gate? Should I continue working at the dentist office? What? I prayed and pondered and listened for my answer.

And I got my answer:

It didn’t matter.

And I was angry at that answer. Surly one decision is better than another! Surely one decision would be better for my family and lead to greater security and happiness!

But the same answer came again and again.

It didn’t matter.

(((Rage!)))

So one day I decided to bring it up with God in the car. I told him how I felt. Tears streaming down my face, I asked him to at least turn me in the right direction. Turn me in that direction and I will run. I have faith in you! Begging for help the words rang in my ears, “This is what free agency is all about. Whatever you do will be ok, every path leads to a successful end.”

So I decided if it didn’t matter, I would go in the direction I’m interested in. So I signed up for school. 

And in between signing up for school and beginning school…I met Doug.

And now, despite my finishing my program with a 4.0 grade point average, I’m here in Indiana living the roll as a stay at home mom.

Is that why it didn’t matter?

I mean, I’ll be going to work eventually. But I really don’t have to work. And maybe the story hasn’t completely unfolded and I’m being totally premature putting it all out there…but…there is something happening here.

Over the past few years I’ve always had this deep abiding feeling that everything was going to be ok. Like there was this future rolled out for me, waiting, and God already knew what it was. I had dreams of angels telling me I was going to be happier than I ever imagined I could be. I had moments of clarity that told me of my future whose details I confided in friends to leave as proof when the miracle occurred.

And sure enough, those miracles did occur. And many many more.

Was it my hope and positivity that brought those miracles to pass, or was it a loving Heavenly Father who knew/knows my needs?

I know the answer. I’ll let you glean from it what you will. But something I will tell you is that my walking in the Indiana sunlight and feeling at home isn’t a miracle accomplished on my own power, although I give myself some credit for tenacity…

No…being transported into a new world so seamlessly can only be an act of God.

Or an act of love.

Though I suspect they are one in the same.

So many miracles, but the biggest one is looking back and seeing the grief and the intense pain, and seeing that I still moved forward.  I can’t see how I did that on my own. There is no way that I made it from September 2, 2012 to today without being lifted by the armpits and carried here.

And now that I’m here, I can feel that I’m no longer carried, cradled in the arms of those that helped me, but rather I’m left to learn how to walk again. “We got you here, now fly.”

It’s time to jump into the next chapter of my life and make new decisions. Again I’m in the position where the directions I go will be of my own choosing…only this time I have Doug walking next to me.


And thankfully, decisions are so much easier to make when you’re holding the hand of someone you love.

Friday, August 21, 2015

High/Low


beep BEEP beep.

The second beep is a higher pitch than the first and the last.

beep BEEP beep.

It’s what the pump says when it has an announcement.

- Low reservoir.
- No delivery.
- Low battery.

Last night J was rudely awoken by the beep BEEP beep.

His pump screen brightly flashed “No delivery.”

He rolled out of bed, tripping his way up the basement stairs to the cabinet full of fresh supplies. (He says it was more of a waddle, but I digress…)Nimbly he changed his set, like he’s done thousands of times before. 

And then he went back to bed.

And slept seven hours with a new pump site that was bent in half inside his body.

Insulin can’t flow through a bent pump site.  J’s body needs insulin to metabolize sugar, as you can’t live if you can’t metabolize sugar. So since his body couldn’t get sugar from the blood cells, it starting eating his fat for energy…which produces ketones…which causes vomiting…which leads to a miserable state of being.

Fresh set.

Fresh insulin.

Extra liquids.

A seven hour nap.

You would think he would feel better.

But that wasn’t the case at all, as he woke up from that nap 53.

“Why didn’t you check him while he slept?” You may ask.

I did.

Twice.

But he woke up low anyway. It was the kind of low you feel all over. He was lightheaded, and famished.

He wolfed down an entire plate of food in record time.

Currently, He’s staring at his second plate of food, “The feeling of the low has left my stomach, but it hasn’t left my arms and legs.”

He stares blankly in front of himself, like the air is full of dancing fairies. 

“I have a dilemma,” he says. “I don’t think I need to eat. My stomach wants me to stop. But my arms and legs do not want me to stop. They still feel the low.”

“Burp.”

He continues to take bites as if he was suspended in air. Slow motion. Focusing intently on his fork. His eyebrows furrowed. “I’m full,” he says as he takes another bite, and then another.

His blood sugar is safe now.  The ketones are gone.  But now he needs to recover from the effects of the low.

There is something about August. Maybe it’s back to school…yes, it’s probably because it’s back to school…but diabetes always sucks in August.

Well, it sucks all the other months too, though especially so in August.

If it seems like I’m punching at the wind, it’s because I am.

I need something to blame for the suckage that is Diabetes.

Today that blame and all my anger goes to August.


Tuesday, August 18, 2015

Diabetes follows


We live in a new state.
Diabetes followed us.

We bought a new house.
Diabetes lives here.

The boys go to new schools.
Diabetes attends there.

We sleep in new beds.
Diabetes sleeps with us.

Diabetes makes sure that we can’t have a completely new start. It acts as though part of the family. Deserving of our attention, needing to be nurtured and fed.

Diabetes hasn’t been acting up, but it’s been quietly defiant.  The boys pretend it didn’t move with us, it’s been up to me to constantly remind them it is there.

“Have you checked your sugar?”
“Have you bolused?”
“Have you checked your sugar?”
“How many carbs are you going to bolus for that?”
“Did you have a snack before PE?”
“Have you bolused?”
“Bring a snack in your backpack.”
“Have you checked your sugar?”
“Have you checked your sugar?”
“Have you checked your sugar?”
“Check your sugar!”

My writing is limited as they marinate in their teenage years. But let this be known: Teenagers need more reminding than children.  Ok. To be fair: MY teenagers need more reminding than children.

Riddle: Three boys began eating their breakfasts this morning…did they check their sugar before?

No.

Why?

Because I didn’t tell them to.

Diabetes is this monkey on their back that “ooo-ooo-ooo’s” in their ears all day, but they are able to tune it out.

Somehow they can tune it out.

Diabetes lives here. It sleeps here, and I make sure it doesn’t go off the deep end.

I quiet it.

I acknowledge its existence. 

I sing it lullabies at the 1am check.

I make sure it doesn’t feel neglected. That it’s still part of the family even though it isn’t wanted.

I’m its friend.

My boys give it enough attention to stay alive. I give it enough attention so they can thrive.

At this very moment the boys are at school, but somehow diabetes has found a way to go with them and stay here with me too.

Empty juice boxes from last nights check.

Sharps on B’s desk that need to be disposed of.

Test strips on J’s nightstand.

A bag of L’s emergency school supplies waiting to be delivered on the counter.

We live in a new state.
Diabetes followed us.

We bought a new house.
Diabetes lives here.

The boys go to new schools.
Diabetes attends there.

We sleep in new beds.
Diabetes sleeps with us.

Monday, July 13, 2015

Dear Kycie.

Dear readers: This past weekend we lost 5 year old Kycie. The doctors misdiagnosed her Type 1 as a virus. As a result she suffered massive brain damage. For the past 6 months she has brought our community together, and opened countless hearts and minds to understanding Type 1 Diabetes. Link to her story HERE.

Dear Kycie:

Thank you.

Thank you for accepting the short, but vital assignment of coming to this earth to change lives. 

Thank you for enduring to the end so nobly. For being a delicate warrior in a world that doesn’t always appreciate such.

Thank you for taking one for the team. Other lives have been saved. Other lives have been changed. Minds and hearts were opened, and that’s on you sweet girl.

Thank you for your smile and your grit. For showing us what fighting like a girl really looks like.

If anyone deserves respite from the storm it is you dear one. If anyone deserves paradise….you.

Thank you to your parents for their optimism and their faith. I have also lost a cherished part of my family, I know that optimism and faith soothes the sting of despair. Trusting in a Heavenly Father and His plan is not easy in the process, but makes things better in the end.

This Earth is a terrible, wonderful, amazing place to be. It is worth the trip, if only for a short time.

Thank you for showing us that over and over again.

Thank you and your family for putting your faces on the Internet, and on posters, and on TV…accepting the position as “poster child” for a misunderstood disease that still is grossly misrepresented by others who are ill-informed.

Your story will prompt physicians to take a second look. Second looks can be a game changer.

If my son’s pediatrician hadn’t have taken that second look, J wouldn’t be here with me either.  He almost returned to heaven as you did. I don’t know why he was spared and you were not, but that is not for us to know I suppose. Maybe from a heavenly perspective, you were the one that was spared.

Kycie, your courage and tenacity are inspirational. You have planted seeds that will only flourish in the fertile soil of advocacy; Advocacy that you have sparked in the hearts of thousands.

One finger prick. One, small, one dollar test can save lives. When before stubborn men and woman would not listen, now…they hear. Families will go home with their newly diagnosed babies tonight because of you.

Rest, dear girl. Rest from your journey. And if you see Ryan, hug his neck for me, will you?

All my love and adoration,

Sunday, May 31, 2015

Hope.

I’ve been away.

The Diabetic Life has laid dormant inside of me while I’ve been swept up in other things.

I don’t put the hours in worrying anymore, and I certainly don’t work overtime to make sure basals are succinctly dialed in like I used to.

There are only so many minutes in a day, and I have the immediate need to graduate early so I can move across the country, and get married, and start my career. Other things have taken precedence, so I’ve reverted to inevidable "Diabetes autopilot." Even though Diabetes is still a very important part of our lives, it isn’t the most important part of our lives, and it certainly isn’t where it needs to be on the priority list.

Basically, it has been: They are alive at the end of the day. It’s a win. 

We are surviving, not thriving.

Tonight though…

Tonight.

Tonight I attended the JDRF Hope Gala in San Francisco at the generous invitation of special friends. Listening to words like “hope” and “cure” and “breakthrough” and promises for change stirred up the complacent advocacy particles that have settled deep in my soul. The juices began to flow, and the floodgates opened.

I am a D Mom.

My kids need a cure.

I never allowed myself to believe in one fully. Mostly because I believe it's important to be content with the cards we are dealt now.  But tonight the man that is the head of the encapsulation team looked me personally in the eye and said, “It’s coming. For your children. It will happen.” And when he showed me cells on his cell phone bursting with the ability to produce insulin, it was like I was witnessing the impossible…and then…believing in it.

And as the bids came around the room, one in particular for $100,000 (yes I hugged their neck,) the gratitude ran so deep it was hard to contain it all inside my frame. Because even if there never comes a cure, these people were there tonight working for it anyway. Working hard on behalf of MY boys, for a future that I wasn’t brave enough to envision, but they are stubborn enough to fight for in spite of my complacency. They fearlessly move forward raising money to fund research for change, and many of them will until the day they die, or until the cure does come. It was humbling to witness such generosity, some people whom have no familial relation to diabetes.

My heart runneth over.

Tonight, driving home from the gala, I made the decision to allow myself to hope, and not let myself, or my boys, settle for a future of “same ol’ same ol’”

Now here it is, almost 2 am and I find myself coercing fruit snacks into my sleeping 11 year old's mouth. My boys need a cure. If there are people in the world willing to work towards that end, I will be honored to stand next to them and dream with them. Hope with them. Lead with them. Fight with them.

It was an honor just to be in the same room with them tonight.

My name is Meri Schuhmacher.

And I’m all in.


Friday, May 8, 2015

What are D-Moms made of?


We are a complicated concoction.  

D Moms are made of Glue:  We hold the entire family unit together.   Our children's challenges stick resolutely to us as we work to find solutions and wash away the unpleasant sticky residue of diabetes.


D Moms are made of Fire:  The bad blood sugar day our children had yesterday?  We burn it away into ash and begin the day anew.  Every day is the rebirth of new numbers.  The old worries are burned away and in its wake come new saplings of hope.


D Moms are made of Ice:  We can numb the pain...the sadness...with our love, our bear hugs and our empathy.


D Moms are made of owls:  At 2am we can see the smallest speck of blood in the darkness of our child's bedroom.   We are wise enough to make life saving decisions in the dead of night.  We bring food and drink to our child's cozy bedside nest to keep them safe.


D Moms are made of wind:  We are invisible as we check a blood sugar while our child watches their favorite show.  Other than the breeze from our departure, our presence is undetectable. 


D Moms are made of crystal balls:  You ate that plate before I could see it?  70 carbs.


D Moms are made of dark chocolate:  We may have a bit of bitterness buried deep inside us, but the notes of smooth sweetness comes through more than anything else.  We are pretty comforting to have around.


D Moms are made of Cheetah: We are fast.  23 blood sugar?  We are up and to the snack cabinet before you can even blink.


D Moms are made of Diamonds: We shine through the hardest times.  We can stand insurmountable pressure.  That twinkle in our eyes when we look at you?  Nuff said.


D Moms are made of Bologna:  You know when our children are high with large ketones and we say, "No worries!"  We are really good at being calm and making you think that everything is ok, even when our insides look like an active pinball game.


D Moms are made of Bob the Builder:  Can we fix it?  YES WE CAN!


D Moms are made of encyclopedias:  Information?  We have retained it.  We are the go-to information source for our children's health.  We are the experts.  Yes...you can site that.


D Moms are made of butter:  We melt easily.  Give us those eyes and yeah...you can have that cupcake.


D Moms are made of steel:  We can be bent, dinged and manipulated...but we will not break.  We support the skyscraping circumstances with ease.  The world on our shoulders?  We can hold that.


D Moms are made of tears:  It is our breath of life.  Releasing the tears is the only way to keep the delicate balance within our complicated eco system of ingredients. 


D Moms are made of crock pots:  In the morning we cook up life by throwing together love, kindness, routine, determination and loyalty, and then letting it simmer all day long into a feast for our family by day's end.


D Moms are made of swords:  We live to conquer.  We were built to defeat what stands in our way.  Don't mess with a D Mom on a mission.  We will cut you.


D Moms are made of silver:  We may look frazzled and tarnished sometimes, but give us some TLC and we will shine so bright you'll need sun glasses to take us in.


Sure...we are complicated.  How can one exist by being fire and ice?  Butter and steel?  


It is a delicate balance...one not everyone can negotiate.  


That is why we were given this calling.


We are D Moms.


It is our job to make it work.


Happy Mothers Day to my fellow D-Moms-in-arms!

Wednesday, April 22, 2015

I always want to know.


Last week I had the opportunity to volunteer at a community event taking blood pressures of the interested passerbys. There were those that volunteered readily to have their blood pressure taken, those that were bullied into it by their spouses or loved ones, and then those who simply said, “I don’t want to know.”

To them I smiled and said, “Knowledge is power! Don’t be afraid of the numbers, they are exactly what you need to give yourself peace of mind, or design a customized care plan with your doctor.”

(Psst…. Thanks, Diabetes.)

A lot of the time, my pleas worked.

I had a few gentlemen with blood pressures so high I wondered how they weren’t having a heart attack right then and there. They gave various excuses for the high numbers, and tried to wave each number aside as a fluke.

For each, I wrote the number on a piece of paper and said, “This number all by itself isn’t harmful.  It’s the ignoring the number that can be harmful. I don’t think it would hurt to talk to your doctor, or even go into a CVS, and recheck your blood pressure when you feel more relaxed to follow up on this number. High blood pressure is fixable, but only if you act on it.”

(Psst…. Thanks, Diabetes.)

Even though I’ve been taught in class that these men must surely be facing eminent death before they hit the parking garage, my experience with blood sugars has taught me that the alarmist technique is never the best one. A 410 blood sugar to any health professional other than my endocrinologist must seem like a ticking time bomb, but in the real world, I know better.

If I can teach anything to my teenagers, --and trust me, I don’t have high expectations on this front-- but if I could teach them anything, it would be that exact same principle: A high number isn’t harmful. Ignoring the high number is.

Tonight, two of my boys forgot to bolus for their dinners. (I don’t’ know if forgot was the right word, because I asked them to, but regardless,) I have two boys that went to bed an hour ago with 400 blood sugars, which trust me, I know isn’t ideal…

But…

They checked, and they fixed it. That is what’s important. Part of me hates that the numbers don’t faze them, and another part of me revels in the fact that they do test, and they can fix it and forget it, without the guilt and the anger attached to it. There’s a fine line to it all…I don’t know where we land, or how I should really feel, but for now I’ll take into account that they are trying, and that’s satisfying.

I don’t ever want them to be afraid of testing.

When they are going to do something every day/all day, anger and guilt need to be left out of it. I have discussions with them about their body systems, and how high blood sugars aren’t ideal and can cause lasting issues in the future. Just like anything in life, decisions you make now are always more far reaching than we think.  "Consequences to our choices" is always a hot topic in this house. They get it, but they also get that attaching emotion to a number is fruitless.

Because no matter what the number, it is a blessing. Knowing what to do next is a priceless gift that I never take for granted.

Knowledge is power. Saying, “I don’t want to know” usually means there is a problem that one is ignoring.

I always want to know.

Even if it is 400mg/dl.


Sunday, March 29, 2015

Full Circle

I had never known more anguish, never known more sadness, and never known more loneliness than the day I lost Ryan.  I remember those early days clearly, although I hesitate to bring myself there fully. It’s an indescribable feeling.  Helplessness and nausea are the only words that come to mind. In the moment all I could do was concentrate on lifting my foot and then positioning it in front of me. One feeble footstep at a time. One minute at a time. Everything baby steps. Everything frightening.

The process of losing a beloved spouse is a horrifying one, and one I only bring up because a dear friend lost her husband last week. Our correspondence brings me back to those helpless, nauseous moments. I continue only to glance at the memories though; I won’t completely succumb to them.

Looking back at myself just a couple years ago, and then seeing me now, I wonder how I got here in one piece. It was a process. Surviving wasn’t achieved by anything special inside of me. It was my ability to endure that was my best quality; getting up in the morning my best talent. I remember vomiting every morning from anxiety and then pulling myself together enough to leave my bedroom to be a mother to the boys. It was their faces that gave me purpose, and ultimately got me through the worst of it.

And now here I am, a few years later, engaged to another man, and embarking on a new adventure that should have me terrified, but instead brings me only waves of peace and joy.

I suppose I just need to publically acknowledge the miracle. How I have been blessed with two men who love me fully, for who I am, warts and all…how?

Miracle. It can only be that.

My fiancĂ© thinks he was sent to care for me, but I feel like I was sent to care for him. We have both been through hell, it’s only by the miracle that we’re able to account for the peace we feel when we are together. He is my rest. When I am with him my worries disappear and I’m able to bask in a happy glow of sureness.

Life throws curveballs. Losing Ryan was a brutal one. Finding Doug was a brilliantly surprising one.

I guess Forrest Gump was right.

But my heart tugs tonight for my dear friend, Tara. The ache. I’ll never forget the ache.

Tara is a fellow D Mama. Dov, her husband, had many super powers, one being a badass D Dad.  His long battle with colon cancer at such a young age seems so tragic, but Dov made it anything but that. He made it magic. It sounds ridiculous, but he did…and I’m forever in his debt for showing me that magic lies within our own selves. No one, and no disease, can take that magic away from us.  It’s a lesson that can change lives. Ponder it for yourself, I beg of you.

If you would like to help Tara and her children, send her some love via this link:


There is so much worry on Tara’s plate right now. If we can take away some of that weight, I’m sure we’ll feel some of that ol’ Dov magic start to stir inside of us. I ask you, which one of us couldn’t use a little more magic in their life?

God Speed, Dov Siporin.

You are loved.

And Tara, I hope through all of this you will find as I did, that same nagging feeling in your heart that says, yes, everything…some day…some way…is going to be ok.


CFD.