This blog is written by a mother to 4 wonderful boys, 3 of which have Type 1 Diabetes. Through this blog, she hope to share her ongoing story, to help others see that there is always a light at the end of the tunnel.
Life changing things happen in ordinary moments. There is no dramatic music or stylistic pan in with the camera. No voice over to prepare you, or lighting changes to soothe the moment.
It happens in an instant and we wonder, is this real? Real life doesn’t just happen like this. This happens on big screens, with ebb, flows, story line climaxes, and happy endings.
“Did I just hear that right?”
“This isn’t real.”
It’s those moments you take stock in your courage and know for a fact you aren’t built to take this kind of punch. You know it’s too much. You wonder how you’re still alive, how your heart goes on when ripped in half…
And the future you had so carefully mapped out disintegrates into a mist of unknowns.
Nothing is for sure: Those moments teach us that lesson with little consideration for our sanity.
I’ve lived too many of those moments.
I know too much.
So when a quiet moment comes, when things can swing either way, it’s hard for me to have hope.
Because I know:
Bad things happen amidst all the ordinary.
Life changing moments don’t count how many you’ve had before. They come when they come because as joyous as life can be…it is equally hard.
The two exist: The light and the dark. And where you’ll be tomorrow is a mystery. There are no weather forecasts to help you know what to expect.
So how do I live without hiding under my bed, I wonder? What is it that makes me wake up in the morning smiling, expecting a happy normal instead of a devastating one?
When I’ve experienced so many of those moments, how do I find that feeling of hope that is essential to my existence?
Is it in the acceptance of life’s dramatic change of tide?
Is it a survival technique? A protection by pretending I don’t know…
Is it believing in a God that tells me I wasn’t sent to this Earth to be miserable?
Is it faith in a plan, that although twisted and sometimes shocking, is designed just for my growth?
Maybe all those things, though my gut tells me there's more.
Like, there is a point to all of this.
I don’t want to say it all happens for a reason.
Were my boys diagnosed with a lifetime disease for a reason?
Did Ryan pass away for a reason?
Has moving to Indiana been so hard for a reason?
I can’t say I believe those things.
I do believe I’m supposed to learn from those dark moments...but I don’t believe that translates into bracing myself when I wake up every morning.
I think learning to focus on the light is paramount to my survival.
Anger breeds more anger. Resentment breeds more resentment. Despair breeds more despair.
And happiness breeds more happiness.
And the truth is, when I look for miracles, I find them. Not only in my past, but daily.
Being mindful of the miracles, I think, is what keeps my motor running.
Life is one ordinary moment after another…good ones and bad ones…
The extraordinary doesn’t come from outside forces.
It comes from us and where we put our focus.
Because light and dark don’t exist separately. Somehow they coexist.
It’s up to us to weave through the shadows to find the sometimes thin stream of light coming in from a crack in the window.
I really believe we can best survive when we embrace the light. Finding the miracles, loving those around us and seeing the good when it’s all tangled with the bad.
I need to work more on accepting those dark places as a neighborhoods bordering the light ones. Maybe even seeing the dark places as maps to the light?
I need to work to find joy in the journey, not the destination. The journey that weaves through good and bad in the ordinary day.
Hope, here I come again.
But also acceptance, and love.
I know we’re all equipped to handle those things. And I know, somewhere deep inside me, that isn’t an accident.
Part of that stems from the fact that every person with Diabetes is unique. There are no “cookie-cutter” people with Diabetes.
This has become painfully clear to me as I raise three boys with Type 1 Diabetes.
They are brothers, but they all have their own bodies.
…Their own feelings.
…Their own chemistry.
…Their own ways to take care of their Diabetes.
One size does not fit all, and it’s fallacy of me to think otherwise.
Uniqueness doesn’t only lie in our society's point of view, but also in our genetic make-up. Sure, some of us can be the similar, but none of us are the same.
Hence, different strokes for different folks.
Especially in the Parent community, we all have different ways of raising our children with Diabetes. We all, individually, do our very best…and we can’t do better than that.
But this last week I’ve found my life in a series of paradoxes that I’ve had a hard time wrapping this swelly mom brain around.
So here I am, in my safe place, trying to make sense of my feelings.
I’ve put two of my boys back on Dexcom Continuous Glucose Monitors. Their numbers are magically sent to my phone, pretty seamlessly, all day and all night.
To put it lightly…I know too much.
Regardless, these numbers are addicting. When the beginning of the year found me sleeping soundly through the night for months with no worries whatsoever, I now have multiple panic attacks daily.
Now that I KNOW what is going on….holy shiz, Batman…my children’s lives are in danger 24/7.
While I was at work last week, my High schoolers took the PSATs. They were both put in pretty rigid testing conditions for the first 5 hours of the day. I was alerted on my phone that my Freshman had a 60 blood sugar with an arrow down. He is a rule follower, so I was sure his phone was in his backpack and he was oblivious to the impending bad low. I called the nurse and asked her to find him and bring him a snack. She happily did so. But for the next hour, his sugars kept dropping until he was in the low 50’s. I was at work. I was beside myself with worry. My hands shook. The anxiety was powerful. My other son was giving me no numbers since school started. I knew he would turn off his phone because any Dexcom alarm during the test would have been the worst kind of happenstance. We've been fixing basals and he's had quite a few almost lows that week.
So there I was, jarred. Alarmed. Genuinely scared…when I thought. “What is going on with you, Meri? A few months ago you were completely oblivious to what was going on and you had no worries."
Seriously. Their blood sugars were not high on my worry list.
Last week, the boys were doing the same thing they were doing months ago. Nothing changed...except…
What I knew.
All. Of. The. Numbers.
It happens every time I put the boys on Dexcoms. All the mom alarm bells go off, and I want to micromanage every flow of numbers flashing on my phone.
Yet…when the numbers aren't there…they find a way to live. They are ok.
I know that having my eye on things makes things better for them, but it turns me into someone else, and that someone else doesn’t flatter me. It’s not like I rattle easily…but those numbers.
THEY rattle me.
You know the saying, "What you don't know won't hurt you?"
Well, what I don't know hurts my children.
I don’t like knowing what I do. I don’t like knowing how the numbers flow, and just how close we are to possible emergent situations every day.
I don’t like harping on my boys. Text after text..
“Food please. ;)”
“Your dropping fast. Eat, pretty please!"
I heart and smiley face my brains out to make my texts seem something less than demanding.
Maybe they’ll hate me.
But what is my alternative?
Ignorance. It sure is bliss, people.
The way I can go from one extreme to the other bothers me.
No worries to constant worries.
I feel like my insides are the Tasmanian Devil. One second I’m still and calm, the next I’m flailing around in a fit of turmoil and despair.
I watched September 2nd crawl nearer to me on the calendar every day last week. It was a relief each day to know it wasn’t here yet, and then yesterday morning, it came.
And because I’m a complicated, emotional being…my feelings were complicated. I sat in a plateau of my emotions, trying hard not to go to one extreme or the other. Staying in a safe place while I figured out a way through the day.
And then I went to church and found out that what I thought was complicated, wasn’t complicated at all.
I am blessed.
My prayers have been heard.
Gratitude for my life, my family, and my friends is currently overflowing.
Ryan is gone, but…Ryan is absolutely not gone.
He lives, and he has made sure his family is taken care of in every way.
Miracles exist. And even though they aren’t the miracles we once would have hoped for, they are miracles nonetheless.
It is a miracle that I’m in Indiana.
It is a miracle that I’m married to Doug.
It is a miracle that our families are not like oil and water. We are simply one. It’s a new concoction, but no less miraculous.
I’ve been through moments in the past few years where I wasn’t sure I was strong enough to handle my new life, and so much change. I questioned my abilities over and over again, and had moments where I wished I could dissolve into the wind.
But when I wished such things, I would be encircled by love and encouragement.
There is no other man on this earth that could have walked by my side the past few years while I ventured to figure out my place in this world. There is no other man with the patience, and heart to guide me and lift me up over and over again.
My husband Doug was chosen for me, and I promise to never take that for granted.
It’s surreal that it’s been six years since we lost Ryan.
It is so separate from my life now. Like that was Book One. And now I’m on Book Two.
Though I treasure that Book One. It is a part of me. Every chapter built me into who I am, and I’m immensely thankful for the memories of a man that is woven into every page.
But now, new pages.
And even more exciting, future chapters.
A future I would have never imagined for myself, but was lovingly gifted to me regardless.
All those moments I was ready to give up, I can look back on now...and breathe in the gratefulness of new days...
And marvel at the strength it has given me, and my marriage.
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.
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.
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 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 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.