Monday, August 6, 2018

20 years.


20 years ago, I was 25 years old and my son J was 9 months old.

20 years ago, The Yankees won the World Series, the Bulls won the NBA Championship, and the Denver Broncos won the Super Bowl.

20 years ago, Bill Clinton and Monica Lewinsky were front-page news.

20 years ago, the sitcom Seinfeld played its final episode.

20 years ago, popular movies were Mulan, Rush Hour, and The Truman Show.

20 years ago, the price of a gallon of gas was $1.06

20 years ago, one unit of insulin cost 4 cents. Now it costs over 25 cents a unit.

That same 20 years ago…my baby was diagnosed with Type 1 Diabetes.
-We almost lost him to DKA.
-We were told a cure would come in 5 years.
-Our lives were set on a new trajectory.

 It’s been almost half my lifetime.

For J? His entire lifetime.

20 years of jabbing, stabbing, worrying, counting, doctoring, checking, changing, and fixing.

20 years of hugging, trying, fighting, loving, shrugging, hoping, and pushing through.

At 20 years old, J is now an adult. He has a beard. He wears an insulin pump in his pocket and a CGM on his arm.

20 years ago I did everything for him.

Today, he does everything for himself.

The past 20 years has brought enormous change. I never would have imagined what was in store for our little family. 

Yet, we keep moving forward. Time does not allow for sitting still. This 20 year anniversary is a testament to that.

20 years ago, on J’s first birthday, I sobbed. Thankful that he had made it his first few months with Diabetes alive.

Today my thankfulness for his life can’t be summed up with words and tears. His life is precious. The gratitude I have rushes through me like a mighty river.

J is one of my greatest blessings. 

He could barely crawl 20 years ago. 

Today, he flies.

Here’s to the first 20 years. 

My son has survived.

Now, my sweet J, it’s time to thrive.



In honor of J’s diagnosis at 9 months old, my friend Mike Lawson will give one of his new picture books to a family who has a child with Diabetes. I wish my children had something like this in their hands when they were diagnosed. To know they weren’t alone, to know that others “check” and “click” too. Please leave a comment below to enter the drawing for Mike's book. It also can be ordered HERE. You can enter for yourself, or nominate another family with a small child with Diabetes. 

Wednesday, May 30, 2018

A step by step guide to perfection.



How to be the perfect parent to a child with Type 1 Diabetes:

Never sleep: Diabetes never sleeps and neither should you. Food, growth, exercise, weather, illness, and "The Voice" results can all affect blood sugars. Sleep is for the weak. Alarms are not guaranteed to wake you. Just stay awake. Forever.

Never be tired: I know I told you never to sleep, but you must always be alert. I don’t care how tired you are. Staying in your pajamas late almost guarantees a call from the school to come in.  And when the kids are home, every second counts. You have to be at the top of your game at all times. Your child’s life depends on it no matter how many minutes you slept.

Always remember: Forget about forgetting. Remember the long acting shots, remember what bottle you drew from, remember to remind them to bolus at least 10 minutes before they eat, and remember the exact amounts they ate last time so you can guess without guessing. Remember what Kung Fu class does to their blood sugar, and remember to dual wave bolus for pizza. And remember the exact date of every month to reorder supplies. Don’t forget all the prescriptions will be rejected, so time reorders perfectly.

Be an expert: Know the exact carb count of any food within seconds of a quick glance, (because that food is going to disappear in seconds.) Make sure you are a mathematician. There is no room for calculation mishaps anytime of the day, including three in the morning.

Be a psychologist: Always know what your child is thinking and feeling. Depression goes hand and hand with this disease. It helps to have a sign that says, “Not my child! Not on my vigilant watch!” Make sure they are always treated fairly whilst at the same time teaching them life isn’t fair.

Keep charts: Graph. Graph. Graph. Everything. Trends need to be at the tip of your fingertips at all times. And keep graphs of that woman’s child on Facebook. Comparing is the only way to validate perfectness.

Keep numbers IN RANGE: If it’s not in range, you have failed.

Make sure your child stays cute forever: You’re going to need to raise money for this disease forever. The cuter your child is in those JDRF pictures, the more money you’ll make. Keep them little forever. Take your child to the doctor and see how to put off puberty. Puberty brings acne, awkwardness, and smells. Not acceptable for a campaign counting on the AWWW factor.

Give your advice to everyone who will listen: Since you are perfect, tell everyone. Let them know how they can be perfect too…by being exactly like you, of course! It only stands to reason that everyone in the world absorbs food exactly like your child. Deviating from your plan is unacceptable.

Have unlimited resources: Type 1 Diabetes is expensive. You need unlimited money to pay for medications, doctor appointments, therapy, and exotic trips to prove Diabetes has nothing on your child. 

Never question yourself: Always be right.

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

Now that we’ve gotten through all that, please read the above again and FORGET IT.

Everything up there isn’t real. It’s all fantasy.

You are a human being. You are not a Marvel superhero. 

It’s ok to try your hardest, but don’t use the above list as your measuring stick. And please don't compare yourself to people you know nothing about. Their life isn't your life.

You are way too hard on yourself.

Your best is enough.

Do you love your child? Do you try your best?

Awesome!

You are perfect.

Monday, May 21, 2018

Find a ride.




I have a magic carpet.

It isn’t something I keep in my closet, or store in the garage.

In fact, I don’t even own it.

But it shows up sometimes. And when it does, it is mine.

I sit upon its comfortable piles and breathe in the sun that always seems to come along with it.

It whooshes me away from myself, and takes me to a safer place, one that relaxes my senses, and soothes the aches.

It takes me away from worry, stress, and discomfort.

It takes me to smiles, laughter, and peace.

I wish I could have it in my hands at all times. Or perhaps have access to it a couple hours each and every day...

I suppose it may be possible, because I know:

It comes when I’m ready.

It comes when I try.

When I’m wrapped up in self-pity and exasperation my carpet is nowhere to be found, but when I look outside my person…and help others in need…

It appears.

It is mine.

And I ride it as long as it will allow.

I’ll often walk through life looking down at my feet, concentrating on my journey, and my story. I’ll analyze every pebble in front of me, and take offense when I bump into things, because shouldn’t others be looking out for me?

On the days I look up from my feet and really see the people around me…when I see their circumstance, and their hearts, and when I long to ease their trials…those are the days that my carpet appears.

Those are the days I’m allowed happiness.

Life isn’t about me; it’s about those I lift up.

Those in the trenches need us.

I used to be in the trenches. It’s a cold, scary, dark place. But when I needed it most, I was wrapped up in love and care and helped up.

I was carried by others who had been in the trenches before too. People who sacrificed their energy and time to take care of me, and lighten my load.

Paying it forward is the greatest gift. It is my magic carpet ride, and I’m addicted to the fresh air it provides.

If you’re having a hard time, look up. Ask for help, or look further down and help another who is deeper in the trenches than you.

And when you reach out your hand?


I promise, it will be the ride of your life.


~MERI

Thursday, May 10, 2018

An Homage to the Mothers


We are called D Moms.  D Mamas.   Even Type 3's.

Sometimes we get a bad rap.

~We're too "intense."

~We worry too much.

~We are overbearing.

~We over think.

~We over react.

~We over manage.

And I only have one thing to say about all of that...

You are probably right.

I want to tell you that if you are a parent, you can understand.

But that is not true.

I want to tell you that if you have diabetes yourself, you can understand.

But that is not true either...just as I will never fully understand your diabetic life,
you will never fully understand mine.

The only way you would understand what goes on in the swelly brain of a D Mama,
is if you were a D Mama yourself.

We are special.  Chosen for our story, as you were chosen for yours.

We are fighters, and we will fight until our last breath to keep our children safe.

New technologies like fast acting insulin and insulin pumps provide keys for better management, but they also provide a clear and present danger at all times.

We have to be vigilant.

We look into the eyes of our children and we love them with a bright tenderness.  We want more than anything for them to live a life free from restrictions, free from prejudice, free from complications, free from emergency rooms and hospitals.

We feel a responsibility well beyond any bounds of normalcy.  We do not want to live a life of regrets.  One day we will need to look into the eyes of our adult Type 1 Children and we want more than anything to say...
"I did my best."

The mothers of Type 1's spend every day racked with guilt.   Every blood sugar number pierces our heart.  We feel responsible for every high and every low.

An argument can be made that diabetes is responsible for every one of those numbers, but in our eyes...whether a reasonable notion or not, we feel they are a reflection of our efforts.

We may not always admit it to you, or to ourselves...but we take those numbers personally.

The A1C isn't called the mommy report card for nothing.

We do not sleep.  That is a choice.  We choose to keep a close eye on the numbers while the world takes a break.  We don't take breaks.  We know that waking up with a off number can domino to the rest of the day. 

We know honeymooning pancreases can sputter.

We know the soccer game from 5 hours earlier can affect the nighttime numbers.
(Yet we urge them to play.)

We know that Pizza can wreak havoc hours after consumption, and we know that Chinese food for dinner means a sleepless night for us.
(Yet we delight in serving them their favorites anyway.)

We know that diabetes never sleeps.  That is why we don't either.

We know that a 200 can turn into a 52 in 30 minutes flat.

We know that on field trip days our children may spike with excitement, or bottom out from activity.

We know nothing is for sure.

So we check, and constantly ask our children how they are feeling...and we hover...watching every move...looking for changes in our children's faces...changes in their gait...tiny beads of sweat on the back of their necks...we know the signs of lows.  We know our children better than anyone else.

We love hard.

We try hard.

We cry hard.

We hug hard.

We hope hard.

We stress hard.

We are hard on ourselves.

We are D mamas.   

Don't judge us because we fret over the details.  To us...Our Diabetic Life is all about the details.

We are 100% responsible for the well being of children we love more than anything on this blessed green earth.

No, we will not back off.

No, we will not calm down.

No, we will not stop making noise.

As mothers, we know that our children are special.  Diabetes makes them stronger.  It makes them resilient, responsible, amazing.  It gives them a sense of humor.  It makes them grow up too fast, and let's them spread their wings too slow.

We wish we could take away the pain. 

                                                                       We wish it were us.


                                                                         We are warriors.


                                                                         We are D Moms.


Hear.   Us.   Roar.



Happy Mothers Day, D Moms. I see you. 
Meri


Wednesday, April 18, 2018

Insulin is #6.


I ran across a fascinating bit of data yesterday watching an enlightening, and validating, lecture posted by a friend deep in the comments on another friends post on Facebook. (Link HERE)

I took a screenshot of one of the slides in the lecture, and Googled the information to confirm validity. 



Oh yes.



It’s real.



Heaven help us. It’s super for real.

I’ve been running the numbers in my head for the past twenty-four hours, and there is no math on this green Earth that makes these numbers ok.

I know that Insulin is complicated to make, but it seems as though the demand is surging the prices, rather than the complexity of it all.  Because let’s face it, the demand for insulin is only increasing…and that demand is not driven by superfluous wants, but rather by need.

Need to live.

My children need a constant stream of this liquid gold flowing into their body all day every day simply to stay alive.

Why would the price go down? No one is going to stop using it because of price. No one that uses it has a choice.

So friends ask me, what is the answer? What can we do?

I wish I were a brilliant mind. My swelly brain can scarcely process the information my boys are constantly throwing at me, much less answers on how to fix the US Healthcare System.

But here is what I do know:

* I am angry.

* This is not right.

* I’m worried about my boys’ futures. 

My boys are entering adulthood faster than I care to admit. Will they be able to afford one of the most expensive liquids on Earth to stay alive?

I know that I can’t sit here and think, "It'll all work itself out."

I need to say something. 

We all need to say something.

I will march around banging my pots together as long as I have to, so I can get more people banging their pots along with me.

I am tired of hearing about Stormy Daniels. (Oh my gosh! I didn’t even need to Google her name. I’m sick about it.) I am tired of hearing about Russian probes. I am tired of hearing about how much our President plays golf. I’m sick and tired of tabloid news and tabloid government.

WE NEED REAL CHANGE, and help, and hope…and our government is a complete joke. Every Politician is in the back pocket of one special interest or another, and this is not left or right. Is our government really so corrupt that we can’t look at the fact that people are dying because they can’t afford their medication?

I’ve always believed that our voices together could excite change, but our Government and news affiliates are living as a bunch of spoiled teenagers.

There is no bigger picture, just petty jabs.

The Healthcare System in the United States is not an easy mess to clean up, so it’s ignored. It's easier to call someone fat, or find something to ruin a reputation than to solve real problems.

If one can’t do hard things, one shouldn’t run for office.

6th most expensive liquid in the world…

On the list with LSD and Scorpion Venom…

But in Canada it’s $30 a vial?

I’ll just leave you with one more screenshot from the lecture and let the silence that follows speak for itself.