This weekend was very tough on me as a father. We took our two kids to the USAF Air show over the weekend and we had a great time. My two year old son, which is type 1 was loving the planes and everything about it. I myself served in the USAF. but it was hard knowing as of today that my son will never be able to follow in my footsteps or experience the great things that the military has to offer if he wants to. It was very hard to hold back the tears when they looked at my son and said we hope you can be like your father and serve this great country.
This disease will stop him from following that dream (if he wanted to).
I have these same views about my son, but we have to remember that our kids can serve our country in many ways. Dawning the BDU’s is only one of those ways. There are many agencies and opportunities that exist which our children’s pre-existing condition would not be disqualifiers for them. By the time our children are adults, probably many more opportunities will exist for them also.
I will teach my son that he has no limits so perhaps he can challenge the norms when he grows up (even if those norms are currently that no T1’s can serve.)
@ryanstover Military service is the only thing that diabetes has held me back from. It was a bitter pill to swallow, but 40 years has helped heal the disappointment.
Please don’t make your disappointment your son’s disappointment. The fact that he will succeed in life is far more important.
And who knows what may lie in the near future? By the time he would be old enough to enlist there could be a cure that is readily available.
I know. As a parent you just dont want to have to tell your child that no matter what they cant do it.
Even if we do not have a 100% cure, I am hoping that pumps and insulin get “smart” enough that our kids dont have to think about it just live their lives like they should be able to.
Ryan, I so much understand what you feel. I am ex-Navy, and my son, 12 years old, is T1D.
When I start thinking too much about it I get a little torn up – but my wife is always the voice of reason (like @ClaudnDaye’s ). She reminds me that my first son, who is in college, has no interest in a military life, and that my younger son, who is a rebel, would fit even less there.
She also reminds me that my son can:
be a long distance sailor if he wants to be
be a private pilot if he wants to be
be a merchant marine officer if he wants to be
be a scuba diver if he wants to be
… in summary, be ALL he wants to be with very, very few exceptions. I think the bereavement is more in us, fathers. I am learning that some of what’s hard about diabetes is in the parents’ feelings as much as in the kids’ burden.
I know that I give in to these feelings at times. Right now, it isn’t so hard since my son is in the middle of an intensive sports season and there is less time to focus on anything other than the now. The day my son was diagnosed I realized that his and our lives had changed forever, and I had to grieve. As time has gone on, this has lessened, but there are still days and nights this gets to me.
Hang in there, there are many of us dealing with this, and even though I know in my heart of hearts that my son will find his way and do amazing things, there is a place to be disappointed that some avenues are closed. Just don’t let it overwhelm you.
Pretty recent Really sorry he joined the club. I know how stressful it must be for you and your wife.
Recently, I posted about my son’s first diaversary, and expressed how much focus I felt was needed. @britt_j pointed out how differently I will feel in a few years. I know I am a lot more accepting, if accepting is the word, than I was 6 months or a year ago. I still hate this sickness with a passion, but I am now able to express that by fighting it in a better manner, rather than reacting emotionally to it: less emotional and more reasoned.
I know it is just so hard when he is this young. I am not rushing the
years but with all the growth spurts, and since he is only 35lbs a few
carbs sends him flying. It will be nice when we dont count those 5 carbs
and he doesnt go up 100 points because of it, or when he can tell us he is
low.
We have stopped pricking him so much and correcting off the dex, and I know
we have over corrected more times now then we use to because we dont want
to have him keep running from us. Our last A1C was 6% but he did run low
more than we like so we are trying to keep him around 150 so he can run
around and play without us hovering over him 24/7. We use to only give him
a few carbs and wait 15 mins, test and repeat till he was just over 100.
Now we just do 6 carbs and say if he goes to 160 oh well, he has to be able
to enjoy his life as well.
***One trouble area we are having major issues now is the afternoon. When
he naps he tends to go high and I mean turns on a dime and goes up and up
and up. No amount of insulin will bring him down. The funny thing is as
soon as he wakes up, it is like he has stored all that insulin and will
drop really really fast. If he goes to 250ish he will wake up and after 30
mins of being up go from 250-120 in 45 mins even 2-3 hours after a bolus
I would imagine he has been higher this time around but I feel like each
day his basals and ratio change. I am hoping that the iLet that manages
basal but also requires just a meal notification being small usual or large
will help us and give him more freedom. With a safe target of 140, and
glucagon years later it will be a great help. Also the faster acting
insulin will help correct him when he is high =)
I know it will get better and we have it much better than the generation
before us, but It still hurts me that he will never remember life without
this disease.
We parents feel the same:( I don’t like to think about it too much because it is too easy to get teary-eyed, and I hate that I’d rather find a way to destroy this terrible disease.
Helping with the community helps me – a lot. I am also looking at other possible goals: enabling ways for us to directly fund research that we find worthwhile, for instance, thinking what I can do for him when he is in college, and also how I can make sure that he will be able to afford health care when he is an adult, on his own.
I like the fact that I can somewhat channel the anger I feel into fighting this disease.
Our son is 3 (turned 3 in on 30 Dec of this past year) and he was diagnosed when he was 2, on 29 Feb of 2016. We’ve been doing this now for 1 year and 3 months and it really hasn’t gotten any easier EMOTIONALLY…the stress is always there, the pain doesn’t get any better (every time I change his CGM/POD and before that, with every MDI shot, I felt my heart being ripped out.) Things will probably get easier once he is able to do things for himself and he understands the importance of following strict protocol, but as has been expressed by other parents of T1’s…I have forgotten what life was like PRIOR to Liam being diagnosed. Since he was diagnosed, our world has turned 180 and it’s really what consumes my mind.
Some things have gotten easier to deal with and manage…after beginning using the CGM and POD, but I still have sleepless nights battling lows and wondering wtf is going on with his BG’s.
I agree with you that, if there isn’t a cure in their lifetime I hope there is at least the APS and other systems get smart enough to manage the diabetes without too much life interference.
Ryan,
I wanted to fly jets when I was a kid. My dad was in the military and I grew up on military bases. It was a tough day when I learned I would not be able to that. I heard it from somebody else, and asked my dad if it was true, and he reluctantly said it was true that I would not be able to fly jets.
But my dad had a good talk with me on that day. He told me that there are many things that could keep people from flying - eyesight, various illnesses, being the wrong size. And he said there are very few things I could not do, but everything else I could do. So that’s what we focused on.
I know the first few years are tough. It will be easier, I promise.
***One trouble area we are having major issues now is the afternoon. When
he naps he tends to go high and I mean turns on a dime and goes up and up
and up. No amount of insulin will bring him down. The funny thing is as
soon as he wakes up, it is like he has stored all that insulin and will
drop really really fast. If he goes to 250ish he will wake up and after 30
mins of being up go from 250-120 in 45 mins even 2-3 hours after a bolus
we used to see this a lot too. I’m not sure if it’s hormones, or that when the little ones are sleeping, the release of insulin from the interstitial space is delayed and then all gets into the bloodstream once they’re awake and moving and their circulation is improved, but we found we had to bolus him some decent amount about 15 minutes before he fell asleep. That way the insulin is starting to kick in as soon as he falls asleep.
This is why T1 in toddlers is sometimes referred too as an entirely different disease…the rules that apply to most other age groups (excluding puberty years which sounds harsh also) don’t apply to Toddlers with T1. Lots of inexplicable events have occurred…and I’m braced for many more events until he’s 6 or 7 and out of this initial toddlerbetes stage.
Don’t kid yourself, what you are going through sounds more variable and far worse than what we deal with each day. Yes, we deal with some weird stuff, but we have an extra brain involved, and even though it is frustrating, it is manageable as long as you give up some of the expectation. You guys are heroes in my opinion.
Limitation is difficult. No way around that sadness. It’s worthy of grief that he might well be deprived of something you loved–or at least of doing it in the same way that you could. I hope you will stick around long enough to share with us what his dreams become and how he thrives despite this awful disease. Sounds like his parents love him like crazy, so he’s got a great thing going for him there!
). She reminds me that my first son, who is in college, has no interest in a military life, and that my younger son, who is a rebel, would fit even less there.
Really sorry he joined the club. I know how stressful it must be for you and your wife.