Trying to "just be"


(karen) #1

My son was diagnosed with T1D in March. He is 12 years old. About a month into the diagnosis we had Dexcom 5 and loved knowing how his sugars are trending so we know how to react. Now we upgraded to Dexcom 6 and a couple weeks ago got the T-slim pump so he now doesn’t have to do the injections 5-6 times a day. (he hated needles) We have wonderful doctors and an amazing nurse who my son admires (male who was diagnosed around the same age, super role model!!) We count carbs, and do our best, allowing for him the most control he can have. Emotions really take control of the numbers. We have a therapist that we see 2x month. We saw a medication specialist and he started on medicine to help him emotionally. I support him every way I know how. I give space to let him react, so he has as much trust that I can safely give. He is angry, and sad, and feels like I treat him like a 4 year old. When he is emotional his numbers spike, when his numbers spike he gets anxious, and doesn’t feel good, when we is anxious he doesn’t think to do the best choices with controlling the sugars, and I feel like this cycle goes around and around. Basically he never feels good, so back to he gets emotional. I know that we are extremely lucky to have everything we do. I want more than anything for him to just “be” I try to not sweat the small stuff. I want him to just relax and do what he knows, and react to the numbers like he knows. I want to trust that he will do whats right, but it’s clear that when he is high, or low, he doesn’t react to way he should, back to he is feels that I treat him like a 4 year old. This is an ongoing struggle!


(joe) #2

@katie6407 HI Karen, I think the hardest thing a parent ever had to do was “nothing at all”. in a year, you will see and predict and be better at treating his diabetes than he is and most likely, better than his doctors. We want to shield and protect our kids from all harm. so with diabetes it’s like you know that a high or low is “damaging” and there is something "you " can do about it, and if he doesn’t you naturally spring into action.

if you pardon my opinion: that’s the thing you need to work on

the consequences are better at nagging him than any person could ever be… and if it’s not you… he’ll have no one to blame.

It takes a long time for a 12 year old to wrap their head about a lifelong chronic illness, this is new territory. this will take years to comprehend, then have feelings about, then process those feelings. I am glad he’s angry, because when it happened to me I went numb… and it delayed me realizing and then processing those feelings and made me miserable for a longer time than necessary.

YOU ARE DOING EVERYTHING PERFECT. But your next step is to let go and let him 8 months you two are still learning a lot., but by next March all the new stuff won’t be new anymore, and this begins a process of new experiences, and how to adjust insulin for those new experiences. The next thing is observe, do, adjust rinse and repeat.

getting used to the idea of your actual job… again in my opinion, which is not to take care of his diabetes but to prepare him to take care of himself is the hardest part of being a parent. you can’t stop him, all you can do is prepare him to take over.

He’ll also watch you carefully, as most kids do, to see how you take care of yourself. if you put stuff off or don’t treat your personal health the way you want him to take care of himself - he’ll notice.

Isolation is bad. The more access he has to others with diabetes and other’s in his peer group with diabetes, I think, the better.

good luck and peace to you.


#3

Hi Karen
I see this is your first time posting. Please do post and share, as I am sure you noticed, this is a wonderful support group full of insight.

Both of you need to remind yourself that when our sugar is up (or down) our emotions are affected differently. That is a fact, regarless of our age.

I think most of us, when we run high tend to be angry/ier, have a shorter fuse and yes making decisions can be hard and yes, we make mistakes and we can learn from our mistakes.
Already he is entering a more difficult phase (early teens) and hormones of a healthy boy can throw everyone for a loop, but add t1d and you may feel like you are juggling live grenades.

Also, Ups and Downs are normal (sugar wise as well as emotional) are part of the game. When he feels like you are treating him like a 4 years old, have you asked him (when things are calm, not in the heat of the moment) what it is exactly that makes him feel like you are treating him that way. if he can explain exactly what triggers him, then together you can take steps to stop “the vicious circle” and learn to work together.

As for not making the right decision when he is high or low, could the both of you create a cheatsheet, saying when you are like “this” do “that” and so on and so forth? like this, you are taking the emotions out of the equation for both of you.
Again, do this, when things are calm and on an even keel.

Being a parent and looking at our child(ren) struggling is one of the hardest things to do. We want to step in, but as Joe mentioned, we need to teach them to take care of themselves. It is hard, oh so hard.
also remind yourself, if you are struggling and being impatient, he will pick up on it. Calmer and safer you feel, calmer and safer he will feel. They pick up and amplify our emotions and feelings. Its hard, but it can be done.

Also, if he is on the dexcom, I am assuming you can see his numbers. Not in the “heat of the moment” but after, you can discuss it with him (like a doctor would) saying, how do you think you could have handled this better?
unless its a critical low, let him handle and gain his own confidence.
We are here, and we care!


(karen) #4

I agree! I truly need to work on that. I alway feel like I need to react, I feel so helpless, or I feel like I’m failing as a mother if I don’t “fix” problems when I know (or think I know) a better way. It’s really hard!


(karen) #5

I never thought that I would actually post anything. I am learning more and more. I’ve been reading about all the different topics, and it’s full of great information! I do struggle when he struggles! I only want what I’m sure every parent wants for their child. It’s nice to hear other peoples thoughts, and ideas of what I should (or shouldn’t do). thanks!


(Lisa) #6

I read this whole feed and just feel with you. I did have just one thought… I’m not sure what parameters your Dr gave you but some “goals” were given to us that took a lot of the pressure off. They gave us a percentage of time they wanted to see our 11 1/2 year old in “range”. We are overachievers. When I stress I try to remember that pretty amazingly low goal and realize “really, we are crushing this” most of the time! I bet you are, too.
My husband, I and my son all struggle with perfectionism so that is something I will have to guard against because this can definitely make it worse!
And I agree with the post that said try to take the emotion out of it. Have yours away from him most of the time, otherwise it can be just like any other expectation placed on him- you do it or you don’t and these are the consequences (for this age more freedom is a good reward) you can reward the effort, not the results. You can try words like “trust”- calling him up to earning your trust. We told our son that we know you are able to do these things and the more we see you do them the more of our trust you have and the more freedoms you have. When we get concerned, we will just dial back the freedom until you can have the appropriate responses - and that is YOUR choice. No judgement, no anger- just reality because safety is non- negotiable.
Hope you feel encouraged!
We are even newer to this than you but are still enjoying the honeymoon.