Wednesday, August 31, 2011

I forgot.

The other night when I was wallowing in the cocoon of pity, I was so wrapped up in the wings of my despair, that I forgot...

I forgot that out in the world there were thousands...millions...of dots of light. Each dot representing other parents walking the halls of their own homes, administering the nighttime check.

I felt so alone.


Really though, I wasn't alone.

I forgot of the other PWD who were (hopefully) sleeping peacefully waiting for their alarms to wake them for their own checks. I also forgot about their spouses who stir in the bed and wait breathlessly to hear their spouse stir too.

I forgot that one number does not make or break my child's future, that my boys will have high numbers because, hello...they have diabetes.

I forgot that there is a greater force. One that trumps the helpless feelings that consume the night.

I forgot that I can't do better than my best. There is no perfection in diabetes...so my sorrow in the unattainable is moot.

I forgot that I am blessed with amazing, resilient children.

I forgot to count my blessings before counting myself out.

I forgot that in the darkness the corners of the bigger picture are hidden.

I forgot to pray.

Most days I feel so strong! Most days I take this Diabetic Life in stride. But I am human. No super human impenetrable brain of steel here.

We all have to break down sometime. It proves our humanity.

More than anything though, I think the most important thing I forgot is that my boys are ok.




It is all going to be ok.

Tuesday, August 30, 2011

Finding my fight at midnight.

The nighttime can be so cruel.

Devoid of light, my soul anguishes in my ineptitude.

Seeing two 400's staring back at me tonight didn't help things. In fact it began a tailspin that even I am worried I won't recover from.

In this nighttime all my hope is drowned away in pools of tears in my hands. All my positivity is enveloped in the black hole of my pity.

How is it ok that I am so completely responsible for my boys well being?

How is it ok that it is all on my shoulders?

Is this a cruel joke? Will my best ever be good enough?

When my boys are adults will I be able to look them in the eye and say, I really truly did my best?

How does the night strangle away all my victories?

Why do I only see the defeats?

What is it about the darkness that makes all my mistakes magnify a 100 times over?

At this moment all I can say is it isn't fair.

They are so beautiful. It isn't fair.

damn it. It isn't fair.

I hate the night. I desperately need the light of the new day. I need a new beginning.

Nothing good can come of this overwhelming darkness. I feel prisoner to the feelings of despair and grief.

I need to break out of here.

I can't let the darkness win.

I can't let the darkness make me feel hopeless.

I can't give up.

...

I'm going to stop crying now. I am going to stop and I am going to move forward. I will persevere and I will not give up...

Even though the darkness tells me to.

I WILL not give up.

I will NOT give up.

I can do this.

I will bring these 400's to their knees and I will fight every number for as long as my boys let me.

I don't know if I'm just too stubborn, or if I'm too stupid, but I am stronger than this. I feel my fight coming back.

I WILL NOT give up.

Tomorrow the sun will rise and the darkness will lose.

Tomorrow is a new day.

One day at a time.

Thank you Laura for your saying, "keep calm and carry on." That is what I will do right this minute.

Giving into the darkness is not an option.

There is no victory in my pity. Circumstances aren't likely to change anytime soon.

I don't know the reason.

I don't care that it isn't fair.

I will keep swimming,

And I'll say a prayer that tomorrow the light will be so bright, my soul will be hard pressed to absorb all the hope it will bring along with it.



Monday, August 29, 2011

The battle.

This last weekend ushered in the back to school sickies. B and J have sore throats, and L has a head cold. It is one of those situations that brings on the inner battle between my swelly brain and my fragile heart.

Today you get a behind the scenes look at the action!


"Hey Meri, the boys are so sick. Maybe you should let them stay home from school today."




"Ummm...Meri...have you forgotten that L's blood sugar number pattern was reminiscent of the skyline of the Rockies yesterday..."




"Just call the school...right now. Let them sleep in."




"They are so flipping cute...you need to keep them home and cuddle them and love them and make them soup."




"Why doesn't anyone listen to me! Protect them from the elements! It might hit 80 degrees today! Keep them home!"




"It's like I'm not even here. The swelly brain gets all the attention."


Yeah, the brain won out today. But tomorrow is a new day, and a new battle. If I had to put my money on one of them tomorrow...I think I would double down on the heart.

Thursday, August 25, 2011

Now is the time for us to stand up and be heard!

Take 10 minutes out of your busy schedule and watch this video. I cannot tell you how important this is. There is a UN Summit taking place next month and Diabetes will be a big part of the discussions on the table. Leaders from around the world will be discussing an action plan, and debate if they should make a goal to decrease deaths from noncommunicable diseases by 25% by 2025. (Personally, I don't know what they are debating...my first instinct is to say, heck yeah! But some countries don't think it can be done. I for one feel that the world can accomplish anything it sets its mind to. They just have to try.) If ever you have thought to take action...the time is now. We need to be heard. Something needs to be done. We can't let the world sleepwalk any longer. They need to know that there are too many deaths, too much suffering because of this disease. Watch this interview and then consider what you can do to bring attention to this ground breaking summit.



If you live in NY, or near to NY, here is an event you can attend to bring much needed publicity to the summit...

http://www.facebook.com/event.php?eid=242368832453916



Monday, August 22, 2011

Scaling the Back to School Alps

I'm scaling the Back to School Alps and it has occurred to me that I'm tired of taking this trek.

Even though my muscles seem stronger, and this year's hike will seem easier than last years, it still is laborious...and not even a little bit fun to think about.

To start off...I miss my boys. I know that is lame. But they are the reason I smile.

Secondly, when you've taken the same hike over and over and over again...the beauty is lost on you.

The same scenery is lackluster at best.

Oh lookie there...it is the "beginning of the school year lows"...yay.

And over that hill is the classic "forgot to call you with my blood sugar."

Three miles up is where they are "too excited to eat their lunch, so they just eat the cookie Tommy gave them."

"TOMMY!!" (Said in the same voice Seinfeld said 'NEWMAN!!')

Scurrying over there is the elusive "forgetting to bolus for breakfast."

Been there. Done that.

And then the worst part of the hike..."the lake of low self esteem, and worry of what others think of my pancreating."

I've been pushed into that water more times than I want to count.

Boring.

I feel like it is groundhog day and I will live the same scenarios over and over and over again.

Man, just call me Debbie Downer. :(

The back to school blues get to me every year. The start of the hike is always the worst. I know the mistakes that lay in the horizon. I know the guilt that is to come.

I am a seasoned hiker now...but no matter how great I navigate the course...no matter how nimble I am in scaling the obstacles...I just wish the course was flat.

I wish the terrain wasn't as rocky.

I wish it was easy.

But somewhere deep down in the recesses of my soul...somewhere I can't place...somewhere...I know that this course makes me a better person. I know that this course is going to mold my boys into the park rangers of their diabetes landscapes. This course will teach me patience. It will teach me to be humble and compassionate.

As much as I don't want to hike up the mountain of back to school...I will. Because as much as I hate to admit it...it will make me and my sons stronger.

The fiber of my boys character will be strengthened by these trials, I honestly believe this to be true.

My backpack is heavy with survival skills. My soul is heavy with determination.

So here I go.

And as I set off, I leave you all with this Irish Blessing...a blessing I hope you keep in your hearts as you begin your own trek up the mountain...

“May your joys be as bright as the morning, and your sorrows merely be shadows that fade in the sunlight of love. May you have enough happiness to keep you sweet, enough trials to keep you strong, enough sorrow to keep you human, and enough hope to keep you happy."

Thursday, August 18, 2011

Half eaten bowl of cereal? Or brain exploder?

Let me give you some insight as to why my brain is swelly.

Exhibit A: A cereal bowl, half full of milk and bits of cereal.

Practically every mother in America doesn't give that a second thought.

Me?

I give it a second thought. And a third one, a fourth one...and maybe even a tenth one.

Yesterday was the first day of school. Maybe it was nerves. Maybe it was excitement, but neither B nor L finished more than half their cereal.

And to top it off...they used bowls we have never used before.

Using new bowls on the first day of school?

How am I supposed to SWAG that?

They are not as wide...but they are a little deeper. The circumference of the circle...why am I even trying to figure this out...I AM A GEOMETRY LOSER!

Swelling. Swelling, and more swelling.

On top of that, B asked me how much insulin. Me...assuming that he had eaten his entire bowl, gave him an amount. When I went back later, my heart stopped.

"Who's bowls are these?!!" (That was me yelling with my eyes practically popping out of my head.)

The boys filed in.

J: "Not mine. I ate all mine."

L: "That one is mine but I told you I couldn't eat it all."

B: "That one is mine, why?"

Me: "Why??? Why???? When you asked for a carb count you failed to mention to me that you didn't eat it all. Don't you think that is important? Don't you think getting more insulin than you are supposed to is a big deal? What if you had already left for school?"

B: "Yeah. I guess that is kinda important."

So he ate a banana to make it up.

Who knew one half eaten bowl of cereal could cause such angst in a mothers heart?

Or was it half? The bowl is narrower at the bottom. How am I supposed to eyeball that????

Diabetes is diabetes. I know it is hard and emotional, and a pain in the arse.

But it the little things that tip me over the edge.

Constant little things.

I guess I have to ask myself, "is the bowl half empty, or half full?"

After some thought, my answer is: Does it really matter? The bowl, and whatever its contents, are poop disturbers. Period.

It is as simple, or as complicated, as that!


Tuesday, August 16, 2011

Proof I don't know everything.

Last week L had his last swimming lesson of the Summer Season. It was one of those crazy days...I don't remember all the details, but we were in a rush and I had to bring B along too. I had L check his sugar in the car on the way to the pool and a 119 popped up.

119 isn't really an ideal number...but for some reason, on that day...my head said, "Alrighty then! Let's swim!" Probably because his sugars have been running high the past couple weeks, and lows have been scarce if not non-existent.

We were late to the lesson and L ran ahead of me, smiling and spunky as usual. We walked in just as he was jumping into the pool...his teacher had him dunk his head and he did it with ease.

And then his teacher said, "Let's start with freestyle," and that is when it went all downhill.

He said, "But I can't do freestyle. I can't swim."

Both his teacher and I were taken aback, 'cause, yes he can.

The next 20 minutes were horrifying to watch. It was like he never had any lessons at all. He would jump off the step and flail and frantically grab for his teacher. My feelings were torn between terrifying fear and rising anger. These private lessons are expensive. This is the last summer lesson, what is he doing?? My jaw sat agape and my body sat stunned and frozen. I didn't know what to think.

I called from the side, "L, you need to listen to your teacher. You can swim, we all know you can. Just do your best, you will be fine."

Yeah, that didn't help.

He continued to flop in, freak out, and then begin to panic. Then his tears started and it was like I was hit on the side of my head with a bag full of rocks..."Could he be low??"

I stopped the lesson and brought him to the side. He was 52.

There was only 10 minutes left of the lesson and I knew I couldn't get him up enough to swim safely, so we said our goodbyes.

I kept playing the scene again and again in my mind. I knew blood sugars caused you to have no energy. I knew they caused you to be shaky. But paranoia? Could it be that the low caused him to forget he could swim?

I went home that night and messaged a few amazing type 1 woman. I pleaded with them to shed some light on the manic scene I had witnessed with L. Could his behavior been caused by the low?

Turns out yes. Absolutely.

One of these woman confided in me that Lows make her feel helpless. That she can't get her body to do what she wants it to do. Another let me know that she does get paranoia with lows, and even feels like everyone hates her and she is a loser. Much like a panic attack. One of them has had dreams full of paranoia.

It came to me that lows can heighten your insecurities. L is insecure in his swimming. He is scared of the water...and no matter how much progress we have made...that low made him go back to that place that told him it wasn't safe anymore.

I'm not sure I can put into words the sadness I have that I didn't pick up on the sugar nose dive earlier that day. I feel like I let him down. I let him suffer in that water for 20 minutes before I pulled him out. I know that I didn't know...but I should have known better. Because as my friend Reyna says, "If you know better, you do better."

I am humbled. I never thought I knew everything...but I thought I had a small grip on it all. This instance made me realize I will never know all the dark corners of this disease. There are always more surprises.

And now I won't be so bowled over. I have learned a valuable lesson. Don't get too comfortable.

I stand ready.

Bring it.

(P.S. L's teacher has agreed to 4 more lessons. I spoke to L and he seems to agree that those feelings came from the low. I feel strongly he needs to get back up on that horse. I can't let that last session be what he remembers from swimming...he needs to get his confidence back. I know he can do it!)

Friday, August 12, 2011

The invader.

I'm not sure how he got in. I'm not even sure when. But the man in black entered our house 13 years ago this week.

My skin crawls thinking about how he hid here, unnoticed for so long. I can imagine his joyful snicker, and the slits in his eyes widening just enough to see the damage he was doing to my baby.

Was it pre-calculated? Was he planning his assault for months? How did he choose my son?

I'll probably never know.

All I know is he liked it here. Because he has lived in the dark recesses of our home for lo these many years, and has found a way to attack two more of my boys. Attack in a silent, devastating, life threatening kinda way.

He has done everything he can to make my boys miserable. He lies in wait...picking the most inopportune times to make my boys go weak in the knees...to turn them ashen white...to make them desperate for a snack.

He can make them thirst. Seriously, who does that? He has a sick sense of humor for sure.

We let him wreak havoc for years. He had control...he was sneaky enough to take my brain and swell it up to astronomical proportions.

For a while, I forgot what was important.

For a while, all I could think about was the man in the shadows. My distain for him. My fear that he would jump out again and attack.

------------------------------------------------------

My plan for revenge came slowly. It was a seed planted by the light in my children's eyes.

One day my son's blood sugar was impossibly high and I smiled and said, "It is what it is...let's just fix it."

The dark shadow of a man cringed at my indifference. I heard him jerk deep into the shadows. He didn't like that I was becoming comfortable.

That moment was exhilarating, and it became my greatest joy to make him shirk.

Over time I could feel that I had the upper hand. I had the power to make HIM tremble in his boots. I wouldn't let him scare me anymore. His scare tactics were old. I could head them off with my outlook. I could defend myself with hope.

The man still lives here, and some days he tries to jump into hearts and cause panic. But most days he just whimpers with his miserableness. Most days he is lonely.

His power is limited now. I will not cower in fear. I will not let him take the air from the breath of our life.

Today...thirteen years after his appearance...The Diabetes Invader can suck it.

We love, despite his presence.

We hope, despite his presence.

We try...we endure...we succeed...

Despite his presence.

Diabetes may have a score of three with the Schuhmacher family...but we trump his score with our hope.

And I call that a win.

In fact, this is more how I see our relationship now...



Thursday, August 11, 2011

From little things to big things.

(The blue candles on Facebook fuel the embers of anger I have for this disease. My thoughts are turned to the families that are hurting, and to the new families whose lives were turned upside down today. As I tried to navigate the hurt, I found myself drawn to my keyboard, to pay homage to those that mark today as their Diagnosis Day.)

Traveling through time.

The view is bright...the seasons fly.

Family is growing.

Your mind is on the little things.

Like keeping your child happy...

And school clothes. What is for lunch? There is construction/traffic on the 101.

Suddenly there is a tapping in the back of your head.

Something isn't right.

Your child constantly thirsts. Your child does not seem right...somehow.

But you need to buy school clothes. You need to go to the grocery store.

You need to find a detour away from the 101.

"Mom, I'm thirsty."

Your heart tugs. Your mind twists and turns.

It is summer after all. You are imagining things.

You aren't a big fan of drama. You question why you are creating it in your head.

And then you see your child doing something simple,

like brushing teeth...or making their bed...

and you see it.

Your child is so skinny.

Your child looks sick.

Your child has no energy.

Something is very wrong.

And suddenly...they are throwing up.

They are breathing deeply...gasping almost...so sweet...so wrong.

What is happening?

You are scared.

Your child is so scared.

And then to the hospital.

And then to be admitted.

And then for the veil to be lifted...

And nothing is the same. The world changes color.

Your child really doesn't need school clothes anymore. Your child always had enough.

There is plenty of food in the pantry.

You don't need to take the highway...the back roads are better for reflection anyway.

Diagnosis day.

Life picks you up and delivers you to your new course.

The new scenery is terrifying.

The new language is a puzzle.

And your child...

Your beautiful child is transformed.

It is as if they are magically donning shining armor.

The nobility...the bravery...the selflessness of a child with Diabetes.

The Diabetes kaleidoscope takes over your view.

Life is full of color and confusion.

But it is intensely beautiful too.

Traveling through time.

The view is bright...the seasons fly.

The family is growing.

Your mind is on the big things.

Like keeping your child alive...

Tuesday, August 9, 2011

Disciplining and Diabetes.

It is the elephant in the room. It is what every mother of a child with type 1 diabetes dreads. How can we discipline our children when they have such a burden to bear? How can we discipline a child who is high or low...especially when that high or low was from boluses that came from our very own hands?

Don't they deserve some mercy? Their gene pool didn't give them any, the world isn't giving them any...

Isn't it my job as a mother to give them a break?

How can I discipline a child who bears the world of this 24 hour disease on their little shoulders. A child who single handedly captures my heart as he smiles through tears during a set change? The child that already suffers, and struggles, and needs my support and love more than anything in this world?

This is how...

I want you to think about the people you know in your life. People you KNOW. People you have met, who you have spent time with...people throughout your life that somewhere in the attic of your brain, you have filed away relationships with.

Now...what percentage of these people have problems?

I hope you said 100%. Because if you didn't, then maybe you don't know these people as well as you think you do. Or maybe you have kidded yourself into thinking that other people, who do not have disease, have perfect lives.

Everyone has problems. Their problems can be intricate, they can be simple, they can be heartbreaking, they can be terrifying, they can be hidden...more problems are hidden than are not.

Now think of your children. Do you think that life is only going to hand them problems that relate directly to diabetes? Can we say that our children's hand has been dealt? That they stood in line and received the burden of diabetes and they are free to forget everything else?

Unfortunately, I can answer that one for you with a definitive no.

Is it fair?

As a mother, I would have to say no.

But life has a way of moving on no matter what your disease. No matter what our ailment. No matter what is fair.

Life continues...and the burdens of life are like the smoke of a fire. It gloms into the pours of our souls and can't be washed away with emotion...or fairness.

Our children must be prepared to live as adults in this world of drama and confusion.

They will be handed more problems to solve.

They need to learn how to work with people who are rude.

They need to learn how to take care of their bodies and their surroundings.

Even though they have diabetes, they still need to know how to make their bed and put the dishes in the sink.

Our children need to grow up and learn the same lessons everyone does. They need to know that it isn't ok to hit their brother, or it isn't ok to scream and have a tantrum when they are no longer a toddler.

I've struggled with this issue for years...because I'm not a callous human being. I love my bundle of joys more than my own life. Punishing them is the LAST thing I want to do.

But I made a mental list of rules...and my children know that no matter how cruddy they feel...some things are just not ok.

I feel strongly it is our responsibility as parents not only to raise responsible diabetics, but responsible adults that don't feel like they are owed anything.

Because the world doesn't give a yankee doodle dandy that our children have diabetes.

So when I punish, (which honestly doesn't consist of more than timeouts and privileges taken away,) even though it hurts me as much as it hurts them, (or more,)...I KNOW...I am doing the right thing. I know that I would have given them a time out if they didn't have diabetes...so why wouldn't they deserve one even with diabetes?

Maybe, because of diabetes, I'm kinder about it all. If I believe it has anything to do with their blood sugar numbers I give them a hug first. I let them know, that I know, they aren't feeling well. I give them insulin, or food...or water...and then I leave them in their time out. Because it isn't ok to turn your anger onto the people around you. It isn't ok to take your stomach ache out on your brothers.

I'm not pretending that I have it all figured out...I've made my share of mistakes.

Hand to heaven...I fail a lot, or at least I feel like I do.

But it is the question I get asked the most.

And my answer always is...if your child is acting in a way that is not acceptable...than it isn't acceptable. Even if his or her sugar is whacked out. Sure, they are allowed to be grumpy. Sure, they are allowed to vocalize the miserableness of this disease...but there are lines that you need to draw. And when you do, you can't feel like you are adding more weight to your child's shoulders.

Because in fact, you are taking the weight away. As adults they will thank you for allowing them to feel...but at the same time, not allowing them to walk all over you.

I've had to dethrone the king before. It is not easy...not even a little. But if your prince or princess has taken over the palace...and they are no longer a toddler...it is time.

It isn't your fault they have diabetes.

It isn't your fault.

It isn't your fault.

No, it isn't their fault either, but setting limits is ok.

You will find one day, that it is the kinder thing to do.

Tuesday, August 2, 2011

Crossing party lines.

I am a Diabeticrat. Or maybe a Diapublican.

Let's just say: I belong to the Diabetic Party.

If it doesn't relate to my agenda...I really don't give a rats bahookie.

I'm embedded in my world and if it effects my children, it effects me. And then I care.

That is how moms roll. Well...how this mom rolls anyway.

I know that there will come a time when I will widen my scope, and care about the recycling problem in our city, and the litter problem in the next...but right now...my children's most immediate needs are what is important.

Mess with them, and you mess with me.

Misunderstand their disease, and expect to be educated by me.

I'm walking through a diabetes swamp...and all I care about is keeping my children on higher ground. The issues that face my Diabetic Party direct my course.

My party objectives:

Keep my children alive.

Educate others.

Advocate for a future free of discrimination.

Further research and technological advances with financial and moral support.

Support all that are effected by our cause.

Hope. Endure. Try. Love.

Keep the faith.

That is where I am.

But this weekend I had an experience that knocked me into the world of another party completely. And for better or worse...the blinders were taken off.

This weekend I spent time with my best friends from my childhood. From age 5 to age 13 I spent most of my waking hours by the side of these sisters. Their mother was a second mother to me. She taught me so many lessons...the most important being: stand by what I think. She taught me my voice means something. I'll forever thank her for that.

My friends' mother...my second mother...died of Alzheimer's Disease a few years ago. She was too young, only in her 50's.

I'm sorry to say that until this weekend, I really didn't know what Alzheimer's really was. What caused it. What affect it had on the families...the caregivers...the people themselves. I had no idea how or why people could pass away from Alzheimer's.

It wasn't on my parties agenda...so I just didn't know.

Now I know.

Their party...the Alzheimer's Party...it is so much like my party it is very hard to discern between the two.

They have the very same objectives as my party.

And after hours of educating conversations between both their party brains and mine...lines became blurred. My intense focus widened. Kinda like I was driving in the dead of night and finally realized how to turn the brights on.

And it became clear to me for the first time...that I am not part of this elusive political sect after all...

I am part of a bigger picture.

The Human Party.

We are all human...and we should care about each other and the heartaches that we carry whether they be the same or completely different. Because even though the diseases we advocate for can be very different...in an eerie way...they really really are not.

We have all had friends drop out of our lives because they couldn't take the heat of this disease. We all have family that don't understand the roots of what we are fighting for. We all know that the world doesn't understand our heartache fully.

But what we sometimes don't know...or what we sometimes forget...is that there are others.

Others fighting their own war. Others hurting just as much as us.

I am guilty of this tunnel vision...I am so self righteous in my knowledge that Diabetes is HARD.

But you know what?

Alzheimer's is HARD.

Cancer is HARD.

Crohn's Disease is HARD.

Autism is HARD.

Cerebral Palsy is HARD.

Bagillions of others diseases and conditions are HARD.

Being human...suffering disease and loss is HARD.

I think it is ok to fight for our party. But I also think it is ok to cross party lines.

Because sometimes the most human...the most patriotic thing we can do...is put our arm around another human being and say..."I see that you are hurting. I'm so sorry. How can I help?"

I truly believe we will become a stronger party in doing so. Whatever your battle. Whatever your disease. Whatever your condition.