“Don’t Unplug Aunt Amy”

“Don’t unplug Aunt Amy!”

This was a phrase often used by my sister and brother-in-law when my then 4-year-old niece Sammy and 1-year-old nephew Benjamin would start to play with exposed infusion set tubing.

The words make me laugh. A lot. And, I have to be honest, they also make me so, so sad sometimes. It makes me upset that my nieces, nephew, and now daughter are growing up in a world where it’s normal that I wear an insulin pump 24/7; where it’s normal for my two-year old to assume that whenever I am not with her and her dad, that “Mommy at doctor”; where my baby asks where my testing kit is if it’s not on its rightful place on the kitchen counter; and where she also knows that sometimes juice boxes aren’t just juice boxes, they’re “mommy’s medicine.”

On the other hand, man, I’m lucky. I have support even from the smallest hearts and hands in my life. And I have the biggest reason of all to take care of myself, or to start over and try again when I have a bad hour, day, week, or month. They are my biggest reason.

Riding The Bloodsugar Roller Coaster Alone

Last Friday I picked my daughter up from daycare and we headed to the grocery store together. My husband, Mike,was getting out of work at about the same time, so he met us there–our plan was to divide and conquer. We wanted to grab what we needed for the upcoming week, get out, and go home. For once, we didn’t have 15 things to do before we went to bed, after we got our two-year old to sleep that is. WE COULD ACTUALLY RELAX. WHAT? YES!

This seemed like an awesome plan; I mean it WAS an awesome plan. WAS. My diabetes decided that this was not the night that I was going to have.

At checkout, I started sweating. Then shaking. And if you are a Type I reading this, you know what comes next. I insisted that I was OK enough to get to my car, and I was, but the minute I sat down, it was like all the life was drained out of me. I felt like I barely had enough energy to dig my testing kit our of my purse. But I did. I was already drinking a juice box when the number 22 flashed on the glucometer screen.

In the meantime, my husband was unloading groceries and loading my daughter into the car seat in my car. As he did this, I gave in to the animalistic hunger that overtook me. After finishing my juice box, I ate a granola bar, and then a bag of pretzels, and then a cookie from the grocery store, and then another cookie.

The logical side of my brain said “stop,” and “you will regret this later,” but the 22 blood sugar said, MUCH more loudly, “EAT OR YOU WILL DIE.” It as one of those lows that made my tongue start to go numb, and I was scared. Clearly, this roller coaster I was now on was going to take a while to adjust, so Mike and Lily got in his car and headed home while I sat in the grocery store parking lot.

Before Lily, Mike would have stayed with, or he would have driven me home in his car and we would have picked my car up the next morning. But we had a child. A screaming, hungry, tired child. And this was not the option that was best for her.

Being a diabetic parent can be lonely. Lows like this happen, and Mike needs to take care of Lily. Last May I ended up in the ER due to a complication, and again, Mike was with my daughter. When she was born, she was rushed to the NICU to get help with to stabilize her blood sugar now that her fully-functioning pancreas had taken over after her tiny, perfect body had adjusted for 10 months to my non-functioning pancreas; Mike went with her, and came back to me, in need of a blood transfusion, when he could.

And that is exactly where he should have been, where I wanted him to be, with her. That is what we discussed.We knew when we decided to become parents that it would be a sacrifice, and more of a sacrifice than some parents understand.

I ended up staying that parking lot for about 45 minutes, until it felt safe to drive. And I spent the entire weekend battling highs and lows, trying to find a way to fix not just the 22, but the highs that came because of my binge. By Monday morning I felt like my body had been through a war. I was the opposite of relaxed.

Sometimes it feels like my family is over enjoying the Ferris Wheel, laughing, living life, while I am on this crazy roller coaster, trying to catch my breath, screaming to get off, tired and miserable when I finally do, and ANGRY that I had to be on it at all.

My Hobby: Going To The Doctor

I think it’s funny when I hear people talking about their hobbies, or see someone post about a new pastime. Not “ha-ha” funny, but the “Ohhhhhh, I remember having those!” kind of funny. With three full-time jobs (mom, teacher, and diabetic) and a number of part-time ones (house-cleaner, literacy professor, dog-walker,etc), the idea of a hobby just feels like more work.

Before being a mom, I DID have hobbies,  REAL hobbies: horseback riding, yoga, writing, reading, cooking. I still love these things, but they have become occasional recreations instead of real hobbies. Real hobbies happen often. Real hobbies are relatively consistent. Real hobbies are part of your every-day world.

Now, what happens often, consistently, and sometimes what feels like every day? The doctors. The endocrinologist. The retinologist. The nephrologist. The ophthalmologist. The counselor. The primary care physician. The podiatrist. The dentist (twice as often as my non-diabetic friends). Every three months. And then I do it all over again. Recently, I can add the Physical Therapist twice a week to that list as I recover from a shoulder surgery I had in January. And that’s just for me.

Now let’s factor in my daughter’s pediatrician, who we see regularly for what feels like “the cold/virus/toddler-infection-of-the-week” that will NEVER go away, at least not for long. Oh yeah, and her hand specialist for an injury that occurred when she was one.

That is what I do after working a full day in a high school. That is where I am headed when friends and colleagues wonder what I’m up to rushing out of the building at the last bell. Realistically, I do find time to do other things, but is searching online for “My toddler screams when I brush her hair” really a hobby? And as for exercise, that happens at 4AM before my day starts, and even though I end up feeling great afterwards and happy I did it, it’s part of a routine to make sure my blood sugar has a fighting chance of being consistent all, or part of, the day. That makes it part of one of my jobs, right?

So, I guess for now days my hobbies include doctors, 2-year old activities and, now, blogging. And I will try to squeeze in adaptations of my hobbies like audio books that I can listen to in waiting rooms and while exercising. But this time only lasts so long, and then I will be longingly remembering the days when my Lily needed me to constantly hold her, or help her on the potty, or make her dinner, or lay with her until she fell asleep.

So for now, I CHOOSE to embrace going to all of the doctors (I’m lucky to have them, and lucky that I get to be alive and that I get to be a mom), 2-year old activities (until she is old enough to realize that I’m not cool), and bogging (to help me realize that I am not alone, and consequently keep my sanity).

Amelia

Mom-a-what?

I am a Type I diabetic, and I am a mom. If you are in a similar situation, being a full-time diabetic, being a full-time parent, possibly being a full-time employee, and trying to be a well-balanced full-time PERSON, then I have to ask: Have you ever tried to search online about anything having to do with being a diabetic who also just happens to be a parent? If you have, I bet you understand my frustration.

If you search “diabetic mom” or “diabetic father,” you are greeted with a slew of articles and advice for parents who have newly diagnosed children. If you search “raising a child with diabetes,” you find tons and tons of articles, blogs, medical journals, and entire websites devoted to helping these new parents of young diabetics navigate what sometimes feels like an un-navigatable disease. If you search “parent with diabetes” you are directed toward in-home health aides, geriatric nutritionists, and web sites devoted to understanding how to read a food label correctly.

Now, I mean no disrespect to any person to whom these websites apply. I WAS that diabetic child with a mom and dad struggling to figure this all out. I have both parents and grandparents who fit into the “parent with diabetes” (in this case,Type II) categories. But those are NOT me, and that is not what I was looking for.

No, I am a woman who was diagnosed with Type 1 Diabetes at the age of 10, who has lived with it for 25 years, who has dealt with multiple, countless complications, frustrations, setbacks, and pains, and has now been given the amazing opportunity to raise a beautiful daughter. According to many medical professionals who I have encountered over the last 25 years, my pregnancy was never supposed to happen. My pregnancy was the scariest thing I have ever experienced. My pregnancy was the most amazing thing I have ever experienced. My pregnancy was a blessing. My pregnancy has given me a new perspective on chronic disease, health, and life as a whole. And as for motherhood, well, as a Type I diabetic, that has been full of even more emotions and roller coasters.

But,  I can’t even seem to search myself on the internet because what I am doesn’t have a label or a specific identity. WHO am I?

I am a Momabetic. And this is my blog.

And all I want is to share my experiences with others in the same situation, and have them share their’s with me. So here we go; let’s talk pumps, tantrums, medical supply bags the size of diaper bags, toddlers pulling out tubing, fighting my kids for juice boxes when I’m low, and so much more.

Amelia