We just wrapped up what felt like a world tour at our clinic. Four appointments in two days, with two daughters and a half dozen providers that have become part of our team. When we are done, it is a mixture of relief, exhaustion and gratitude. I love our 'people' but the reality is that in times of T1D need, this is a huge burden.
In the eyes of my girls, it can be summed up into a negative knot of things like: missing school, missing important academic tests, skipping practices, missing club meetings, rescheduling work dates, not getting perfect grades, not getting paid, feeling like you let your friends down....
This is the real burden of T1D for many. It isn't the steps needed to monitor blood sugar, dose insulin or change infusion sites, but it is the imbalance of prioritizing what is most important to the patient.
To our provider that said T1D needs to be at the top of the list, I understand that but the risk is that shifting something to the top may result in the breakdown of everything else and that may lead to depression, avoidance and non compliance. For a mom that watches closely to ensure that her kids are free to not let T1D hold them back from anything they want to achieve, I think we need to be ultra careful in our language that depicts T1D as the most important part of a teenagers day. It is important and I agree that we need to find a way to fit it in. However, if we make T1D the domineering influence of everything our kids accomplish, we will in turn be sending the message that if their care or A1C is not perfect, than they will have failed. I don't know about you, but I am pretty certain that there is no way to get an 'A' on how you take care of your T1D. The best we can do, is truly the best that we can do.
Which brings me to the this thought and something that I want to start a conversation on... how do we balance 'Kids First, Diabetes Second' with our high achieving older children? I am slowly transitioning care to the girls (age appropriate steps toward independence) and am not necessarily the main caregiver that I used to be. I am more a support system for the steps/tasks that they do not want to do (insurance, night-time blood sugar checks, supplies, other med reminders, etc) and that leaves more on their shoulders.
How do we teach the understanding that it is still a balance to manage T1D while living a full, wonderful life? And for our children with T1D, how do we express the need to understand that there is 'perfect' YET STILL, the understanding that there is a need to manage daily blood sugar tasks. In other words, this is a marathon, not a sprint. We can't give up on taking care of everything if one thing like A1C is not perfect.
I would love to hear your ideas and thoughts on successfully raising high achievers that seek perfection in life. Can we help them find their balance?
No comments:
Post a Comment
Comments are welcome as long as they are respectful. Anything deemed inappropriate will be removed.