What It’s Like To Be a Type 1 Mom

What It's Like to be a Type 1 Mom

 What It’s Like To Be a Type 1 Mom

Stacey Rose

I am a 49-year-old type 1 woman who has had diabetes for 39 years. When I was diagnosed at age 10, I was told a cure was five years away. Well, clearly that didn’t happen. So then I was told I probably shouldn’t have kids. Well, I’m a type 1 mom now and I have three kids. My oldest son is 14 and I also have soon-to-be 12-year-old twins (boy/girl). I was all kinds of a high-risk case both times:  at 35 with my first son, I was already a “geriatric” mother and then at 37 with twins not to mention the whole type 1 diabetes thing!

My younger self would never have imagined I would have one kid let alone three! My younger self didn’t want to get married, but I did that too and was married for almost 15 years. Of course, I never imagined I’d be divorced either, but here I am. Life changes like that can certainly throw your diabetes management for a loop.

And where I am now is a really good place, actually. I get along very well with my ex-husband whom I share custody of those three kids with. My mother is very involved with my kids and is there more often than not when I am not with my kids. I have a wonderful boyfriend of three years now and he is the most generous, giving man I have ever met. It’s a complicated life with me in Massachusetts and my ex-husband and my kids in Southern California – I fortunately, have the flexibility to travel back and forth monthly and it works for all of us.

I’m also a runner – another thing my younger self would have laughed at. I started running at age 39. I guess I’m a late bloomer in all aspects of my life! I have a goal to run a full marathon before I turn 50 (so I’m trying to train right now as that’s getting closer as we speak, although I am plagued by injuries lately.) I have run a half marathon before though and have the drive to do more, which is another bit of my being a type 1 mom. Part of my reason for wanting to run a full marathon is big a “F you” to diabetes. That won’t keep me from doing something I really want to do.

My daughter, one of the twins, also has type 1 diabetes. She was diagnosed at age 5, which as you can imagine, was devastating news. I know I can’t be the only type 1 parent who blamed themselves for a child also getting diabetes. I logically know that is not the case, but it’s hard not to feel that way initially.

My daughter has brought me out of my shell in terms of wanting to get involved in the type 1 community. There are so many opportunities to advocate and I’m still fumbling my way around trying to figure out where I belong in that crowd. The fact that there are so many opportunities to serve that community is a good problem to have! I often refer to myself as a “wannabe” advocate, as I just don’t know where I fit in yet. I have done walks and raised money and I try to raise awareness and educate people daily.

Below is a picture I have done with my daughter every November for Diabetes Awareness Month. (It’s not a coincidence that we use that particular finger for the finger sticks, by the way. My daughter thinks that’s funny. You may notice a theme here about my feelings toward this unwelcome guest who refuses to leave.)

What It's Like To Be a Type 1 Mom

I’ve always been a bit of a loner and maybe denied myself the benefits of a support group, but I did find a wonderful group of other type 1 mom ‘s right after giving birth to my first child. We have all remained friends and I really don’t know where I’d be without them as a support system. We’re all over the country and a couple international, but have all gotten together as a group and just one on one throughout the years.

We help each other find doctors, we commiserate with each other on bad days and highs and lows we can’t explain and fears when we go to the eye doctor or suspicious symptoms in our kids. No one knows what you’re feeling or going through better than someone else who goes through those same things and a couple of us also have children with type 1 diabetes. It’s heartbreaking for all of us to hear this news. This group of ladies has been a lifeline for me.

The challenges of having type 1 and managing my own health is compounded by my daughter having it too. She’s growing up now – almost 12 – and is branching out into her own independence. It’s really hard for me to let go of those reins. I’m sure my own mom can relate to that. It’s always hard letting go of your kids as they grow, but even more difficult when that child has a chronic disease.

When I was a kid, I often “joke” that it was one shot in the morning and hope for the best. That’s not really a joke though. It’s pretty much the way it was. I didn’t have a glucometer, as they weren’t really around back then. When I finally did get one, you couldn’t take it with you. It had to remain in its spot on the counter because if you moved it an inch you had to recalibrate the darn thing and you needed a degree in chemistry to do that. I’m exaggerating, of course, but it sometimes felt that way.

All the new technology that I have like my insulin pump and CGM are wonderful tools! They can be very overwhelming though and I’m scared as hell that my daughter will forget to change her pump or not bolus or not pay attention to her blood sugars when she goes off to camp or out for the day without her dad, my mom, or me.

At this point, I don’t remember not having diabetes. My daughter has now had type 1 for six years and I’m afraid she’s getting to, if not already there, that stage where you forget what it’s like to not have diabetes and that breaks my heart. My oldest son, who is 14 now and does not have diabetes, did a Christmas wish picture for school when he was in 2nd grade. His first wish was for everyone in his family to not have diabetes – another heartbreaking moment. I don’t thinks my kids ever thought of diabetes as out of the ordinary though, as they have always been around it.

My other two children, both boys and one a twin to my daughter with type 1, are enrolled in the TrialNet studies, or I should say, they get tested once a year for antibodies and have been negative so far. The waiting for results period is a scary time though. I’m sure all moms of diabetics, and maybe even more so type 1 mom ‘s, always worry about that. I do at least.

So, what is it like being a type 1 mom?

Well, it has never stopped me from doing things – having kids being one of those things. I want to show my daughter that she can do anything she has a passion for. Yeah, we need to plan in advance for everything. I wonder if I was always that way or getting diabetes at a young age made me a planner.

My mom will tell you I was always organized, so I guess it works in my favor in managing life with Type 1 diabetes. Management isn’t always easy, but I have done it for so long that I just do it. I count carbs in my head. I always have glucose tabs on me wherever I go, my phone is always charged for my CGM, but you just do what you do. I take care of my kids and live my life. Do I want a cure? Of course I do. Not so much for me anymore, but for my daughter, yes. I would gladly never get cured myself for my daughter to not have type 1 and that’s pretty much all mothers I’m sure, whether a Type 1 mom or not. 


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