Twins Always Take Care of Each Other!

Tuesday, July 1, 2014

Type 1 Diabetes and the Family Dynamic

Type 1 Diabetes can be hard on a family.
There. I said it.

I am typically a glass half-full type of person so I normally will not admit to the challenges often but the challenges in my life lately have changed my perspective on so many things I can't even begin to put it into words. So, for the sake of my blog, I will start here, type 1 diabetes can be hard on a family. For many reasons. I have blogged about some of the silly happenings, some of the anecdotal happenings but the truth is, T1D will change the family dynamic.

I have many blogs and articles about T1D moms and dads calling them super heros and I have often appreciated those perspectives because daily life with T1D sometimes feels like it is an appropriate classification.

Think about it.
You have a child that is now diagnosed at a young age - some as young as 6 months old! - with type 1 diabetes. A potentially fatal disease. Requiring constant, CONSTANT... I mean 24/7/365 monitoring of blood sugar levels. There is no break. E-V-E-R. Not on holidays. Not for a party or a picnic. Not on vacation when you need a break. Not during the night when you had a long day and just need some sleep. Not EVER.

Occasionally T1D will cooperate and you get some fantastic numbers! YAAAH!
Other times, you do absolutely everything right and the numbers are like this...

Yeah - that is a whole lotta high and then a whole lotta low!
Bad pump site - right in the middle of a long car ride to the shore! Gotta love it.

But the bottom line is insulin pump sites go bad. It happens.

And you have to GUESS on the carbs of the food you (or they) are eating (if you don't have the nutrition label info, and HOPE you are close. If you aren't, then you get something that might look like the numbers shown above (or some variation of it) and have to make corrections.

Sometimes the body changes and dosing adjustments need to be made. And guess what? The body doesn't send you a memo that says "Hey! I am going to totally screw up your life for the next few weeks until you figure out how to adjust the insulin dosing!" You just have to first live with it for a while to test it to see if it is a fluke. Then start making changes to flush out the proper dosing adjustment. Fun, right?!

And speaking of dosing adjustments. You don't have just ONE thing you can change and make it all better.
If you are on shots, you are taking 2 types of insulin - likely 4 shots per day.
We currently have my daughter on the insulin pump, which we love! But then we have to figure out is it the insulin to carb ratio that need to change? Or perhaps a basal rate change? Or maybe the correction factor...
Not as easy as you would think!

How about watching your child feel sick because of having high or low blood sugar levels. Definitely one of the most difficult parts of having a type 1 diabetic child. It is heartbreaking. There isn't much to say about it because most people with children know how difficult to have sick kids but this is more frequent. When they are having fluctuations in their blood sugar levels they can feel sick daily. And all you want to do is take it away.

And then, of course, if you have multiple children, you have to deal with the "treating the illness with candy" issue. Don't ever think that any parent of a type 1 diabetic likes giving their kid candy 24/7. Seriously. We hate it. We worry about what it is doing to their health, their weight, their teeth, their bodies! Then add to that the crying sibling that is upset because they too can't have candy right before dinner or right before bed or in the middle of the night or whenever. This problem does improve as the children age, but try explaining the logic and reasoning to a 3-year-old. Try to not let that sibling feel upset or slighted.

Speaking of siblings. Imagine bringing type 1 diabetes into your home, feeling overwhelmed yourself, and realizing that you need to balance that and not pay undue attention to the type 1 diabetic child. Because you know that the other children will feel abandoned and sad and neglected. Talk about the most delicate balancing act. Because you are, in fact, very new to type 1 diabetes and very worried about the blood sugar numbers so your inclination is to obsess over those numbers and getting everything right. But you must still manage to pay equal attention to everyone in the home.

And add to equal attention in the home is the spouse. Because they are there and are looking for their usual amount of attention as well. If you wish to keep a healthy marriage, you can't forget about your spouse.

It is well known within the type 1 diabetic community that parents of T1D kids often do not sleep (at least the primary caregiver of that T1D child does not). Because there are frequent blood sugar checks overnight and if you are lucky enough to have a continuous blood glucose monitor, it is alarming to let you know when your child's blood sugar is going high or low over night and you are up to correct it. So just remember that we T1D parents are going about our days with little to no sleep - almost daily sometimes. (Everyone takes sympathy on a new mom with a new baby in the house because she is getting no sleep... keep in mind her baby is eventually going to sleep through the night. The T1D mom doesn't have that "end" in sight. We have our sleepless nights until our T1D kids are grown and they take on their own sleepless nights - and even then we still have sleepless nights because we worry about whether or not they are waking up on their own to treat their own highs and lows because we have always been there to take care of them before!)

So, all of this is happening "behind the scenes." Many people say we make it look easy. That once you get used it, it gets easier and in many ways it does. But it never truly gets EASY. It changes your lives forever. It changes your family dynamic forever. Sometimes for the better. Sometimes not so much. But you make the best of it. Sometimes we may make it look easy and sometimes it might even feel easy. But mostly we are thankful for the support we have to make it easier. Living with type 1 diabetes is not easy. Not for the parents. But especially for the type 1 diabetics that have to live with it for the rest of their lives (or until they find a cure!)

Thanks for reading!