Eight years…

Eight years feels like a lifetime. But I certainly know it’s not. It flew by in the blink of an eye, or rather a

click of a poker.

 

I want to share with you some things I’ve learned over these last 8 years A TOP TEN list if you will.

 

1.The experienced T1 moms were and still are right. They are the BTDT of my world. Everything they

told me and continue to tell me is like a look into my future.

And they will be surviving.

 

2. Those same T1 moms (that I kind of hated in the beginning ‘cause they knew everything) would

become my closest friends, cheerleaders, advocates, and shoulders to cry on.

And they will tell you that you will survive.

 

3. I would send my son to school with a sugar of 400.

Correct that nonsense.

Peck on the cheek.

Slap on the butt.

Have a nice day!

And he will survive.

 

4. Number 3 does not make me a bad mom, in fact, it makes me a great mom.

And survival seems like we’re low balling.

 

5. There will be people that refuse to learn about type 1 diabetes, people that know ‘too much for their

own good’ about type 1 diabetes, those that know nothing but want to learn, and those that are

completely indifferent to type 1 diabetes. It’s my job to be educate and be patient with them all.

You pray for their survival in the meantime.

 

6. Both you and your kid forgetting you have Type 1 diabetes can be a good thing in most cases.

Survive, hell, thrive.

 

7. When you are 50 miles from home, your POD (diabetes insulin pump) will fail, and you will not have

any insulin.

Or the test strip container sounded like it had more strips than it really does.

Or the insulin you thought was fast acting, was indeed, long acting. Why do they look so similar?

And you will cry, and then survive.

 

8. You will stay awake checking blood sugar and blood ketones every hour on the hour for as long as it

takes when your child with Type 1 diabetes is sick.

And you will drink coffee likes it’s air, and survive.

 

9.Swimming in oceans, going on bike rides, sleepovers at friends house, roller coasters and other

activities that out of arms reach are going to cause stress. Stress and worry like no one can ever

understand unless you’re a mom or dad of a child with T1.

And you both will hold your breath until your back on firm ground, and of course, survive.

 

10, Your kid’s friends’ parents will tell you that you are doing an awesome job with him, because of how

he handles his diabetes like a boss.

 

Like. A. Boss.

 

Survival is for amateurs…more like kicking ass and taking names.

 

Like. A. Boss.

 

 

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Dear Mr. Boss Man…

Dear Mr. Boss Man,

I am tired.

No, not the I-stayed-up-late-and-watched-Parenthood-tired, but the bone-aching, mind-numbing, I-worked-all-night tired.

Yes Mr. Boss Man, I do have another job.

Or rather, your job, is the other job. Your job is the one that pays the bills and gives us health benefits. Your job is the one for which I went to school. Your job is the one for which I have three different certifications. Your job is the one for which I got my Master’s degree. Your job is the one for which I am back in Graduate School. I work at your job from 8:00 am to 3:15 pm. But, you see, Mr. Boss Man, your job is my second job.

My first job is 24 hours. 7 days a week. 365 days a year. Sometimes minute to minute.

Forever. And ever.

In fact last nights shifts were at 11:00 pm, 1:00 am, 3:30 am, 4:40 am, and again at 6:50 am.

I am on call. I run to emergencies. I run to cries for help. I run into the danger. Nothing is too small for me. I am on call. When called. I run. My first job is on the job training. I am still learning even almost 8 years since I’ve been hired.

I did not go to school for this. There are no schools. No college. No Graduate School. No certification. July 25, 2007 I was hired on the spot. I knew nothing, and still wonder sometimes if I will know enough. Yet it is the most important job I will ever have.

No, silly Boss Man, I am not a Superhero. I am a pancreas. Yes, you heard that correctly. I am an organ. I am my son’s pancreas living outside his body. No, I don’t actually hang on his body and pump insulin into him, but I might as well. I check his sugar (or make sure he does), then I take those results and figure out WWtPD…What Would the Pancreas Do, I make guesses and hedge my bets on setting the right formulas in my son’s insulin pump so that it can act like a real pancreas.

Yes, your job in important too. Don’t get me wrong. But there is nothing more important to me than my role as pancreas. You see, because if I screw up, there may not be a second chance.

So I will take tired. I will take sleeping short clips at a time. I will take that exhaustion that is so deep it hurts. It’s my job.

No, I’m not a Superhero.

I’m a mom, of a boy, with Type 1 diabetes. And until there’s a cure, I wouldn’t have it any other way.

Love,

Me

 

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Yes, it gets eas…well, maybe not.

I saw an old friend yesterday. We were friends back when my heart and soul was diagnosed with Type 1 diabetes. We haven’t seen each other in years. Since we lost touch, so much has happened. I went back to work. I went back to school. My kids have gotten so much older (but I haven’t). Some of us in the house were diagnosed with Celiac (that’s another future blog…www.celiacdemystified.org) and things have gotten easier.

Wait.

No. They haven’t.

Except, if you had asked me that 30 seconds before I had reconnected with this old friend, I would have said, “Yes, it has gotten easier,” but in fact, I was asked that and I didn’t say that. I couldn’t say that.

Almost 8 years in and I COULD NOT say it has gotten easier.

Here’s how the conversation transpired:

Her: Wow! It’s been so long. (Peering into my cart…) I feel like I’m forgetting something.

Me: Well, I don’t buy much here, we have celiac now so…

Her: Oh, celiac? But wait, didn’t you also have diabetes?

Me: Yes, we do have diabetes but we added celiac about a year ago.

Her: Oh, gosh, I remember that now. It was so confusing and difficult. Is it still confusing and difficult? Does it get easier?

Is it still confusing and difficult? Does it get easier? Is it still confusing and difficult? Does it get easier? Confusing? Difficult? Easier? Hhhhmmmm.

I have to impart some back story here…we were friends when my boy was JUST diagnosed. We were still on shots, the pen in fact. So she remembers me fumbling with pen needles, and cartridges, and lugging all the supplies around. Also, we were just learning how to count carbs, and even what carbs were, what diabetes meant, and how it was going to affect us in the long run. She remembers the crying. The pain. The uncertainty. The ignorance. The exhaustion. The everything.

We now have an insulin pump (have for many years). We now have the Dexcom Continuous Glucose Monitor (have for many years). We now use Nightscout #wearenotwaiting to remotely monitor glucose levels. We have advanced along with all the available technology out there. Gone are the days of pen needles, looking up carb counts in a book, carrying ketone strips for every number over 250 and so forth.

Back to the conversation…

Me: (Small laugh and smile) It does get eas…

Me: (Smile) It does get eas…

Me: It’s not so confusing and it’s not so difficult.

WHAT?!?! I couldn’t bring myself to say that it has gotten easier. I was shocked by my own words, or lack thereof. I FEEL as if it has gotten easier, but all I could muster was that it was not so confusing and not so difficult.

I guess it will never be easy knowing my son can die from Type 1 diabetes.

I guess it will never be easy knowing that my son is alive because of insulin.

I guess it will never be easy  knowing that my son will never get a break from wearing a pump, or giving himself shots, or counting his carbs, or checking his sugar.

I guess it will never be easy knowing that I will forever be up in the middle of the night making sure my son is okay.

What is easy is knowing that everything I do keeps my son happy, healthy and alive.

Yeah, that’s not confusing or difficult at all.

I do what I do because it’s what a D mama does.

 

 

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