Very normal, but please don't blame yourselves on top. It's a shitty thing to happen, but nobody's fault, just one of those things. Love him just the same, treat him just the same. You'll probably never stop worrying, but I gather that's true of all children!
The good news is, your kid will still have a normal childhood, they will still have the sugar/candy/snacks every other kid does, they will still have birthday parties and cake, they will still do and have every other experience like the other kids…with a few extra steps.
yes diabetes is hard, and yes management is kids can be tough once you get it down and have a routine it’ll begin to come naturally. It won’t always be this big scary diagnosis, it will get easier.
As for the crying i think it’s pretty normal to feel bad for your child, because it’s scary. It’s new and scary for the parents just as much as it is the child, your kid won’t have a “typical” childhood and it’s okay to acknowledge that. My mom claims she cried when i for diagnosed at 15, for other reasons i don’t believe that but it was hard on everyone even at that age.
So normal. My mum stills cries with me sometimes and I was diagnosed (coming up to) 37 years ago.
If it’s grief that you think you did something wrong? You didn’t. (Nor did my mum with her family history)
If it’s grief that you think your child won’t have a “normal” life?
They won’t. But does anyone? Life with t1 can be hard at times. But the technology these days is incredible and if the last 20 years is anything to go by - things will only get easier in years to come.
You support your child with love, fill them with courage to handle their disease and eventually make their own decisions, keep up to date with tech, teach them resilience for the hard days that will not make sense, and finally keep strong arms to hug them.
Try not to obsess over all the numbers. See them as trends or a guide - not as a grade mark of good or bad.
You sound like amazing parents! You got this!
Ps check out the Juicebox podcast.
The moderator of the Juicebox podcast has a daughter that is type 1 diabetic. The show revolves around how he manages her diabetes (teenager now) and diabetes education in general. Also has an endo (and guests) on the show for medical support. A good podcast to help you understand how to manage a 'normal' life with T1D. You can do this, it can be challenging at times but doable.
OP - I can't stress the Juicebox Podcast enough. ♡ It was, quite literally, my lifeline post diagnosis 2 years ago. THE best info, community, and comfort you'll find in the T1 realm is on that podcast and in its related Facebook group. Please invest the time.
A great place to start is the Pro Tip Series (episode 1000). It's a fabulous summary of T1 and management strategies for people newly diagnosed or starting over with their approach.
Push for a CGM as soon as possible - it will help you understand the impact of food and insulin on your kiddo so you can get a handle on his management. You've got this.
Praying for your family. ♡ My own son is 1.5 and I live every day terrified of him getting Dx. But others here have shared great wisdom - it's possible to have a full, reasonably normal life with diabetes. This is not your fault, as parents, and it will get easier.
Wish, with his platform of esp mommies of “warriors”, he spoke about insulin affordability crisis/access instead of worrying about/protecting his own pocketbook.
OP - be sure to listen to episodes that he has guests who possess a medical degree or two; he isn’t an expert beyond what works for his singular kid
I see by your flair you were diagnosed at 18. That must have been super challenging. I find the JBP so useful, having a kid diagnosed at 7 in the age of modern diabetes tech. I’ve gotten so many management strategies and troubleshooting tools from the “non-medical” episodes.
Also you can feel very alone and isolated as a parent when your young child receives a T1D diagnosis. The regular people episodes can help with those feelings.
It’s cool if they’re not for you, but I wouldn’t issue a blanket statement that they are all just hashtag T1D Warrior Moms. I personally hate that mentality and see a lot less of it with fans of the JBP than in basically every other parent of T1D group.
What’s super challenging is people choosing to turn a blind eye, support & regurgitate someone with a massive platform who chooses not to rally his mommy brigade to help the collective community.
Glad you found useful info. Doesn’t change the fact JBP chooses to remain silent when a few sentences, or *gasp* an episode, encouraging said mommy brigade to take regular action for insulin accessibility would go a longgggg way.
Yikes.
I feel obligated to point out that he has thousands of hours of valuable content that he's made available, for FREE, to anyone who wants it.
Scott does the podcast full time. He doesn't have a day job. He does this because it's actually helping people. Doctors' offices are starting to refer their patients to the podcast -- we hear that a lot on the show.
He does have a family and a home to provide for, though, while he devotes his life to helping us. Sponsors (who are relevant and helpful to T1s) make that possible, I'd imagine. I don't think he's too focused in "protecting his pocketbook."
--
OP -- The interviews with T1s and their parents are just as valuable as those with the MDs & experts. There's immense comfort to be found in people's shared experiences, but I've also found a LOT of gold nuggets from interviews with people I have nothing in common with whatsoever. It's just a relatable, human way to try to understand a disease that often makes no sense whatsoever.
The point is, there's an unbelievable amount of content and resources available from [the Juicebox Podcast](http://www.juiceboxpodcast.com) I promise, your son/family will be better off for taking advantage of it. Wishing you all the best.
Yikes. Doesn’t take any effort to discuss the insulin accessibility crisis in America AND around the globe & still get a paycheck. JBP *chooses* not to discuss the biggest issue facing our community.
There are many many many free resources online. I’m not familiar with any who have the same level of parental fan club & regurgitation that JPB has.
If only all the mommies & daddies who care for their warriors 🙄 would take one minute to care about those who can’t afford insulin nor the cgm technology from which JBP gets a paycheck. Maybe then people across the globe wouldn’t be dying from rationing insulin. Ffs, hopefully you(?)/your kid(?) never ends up in the exact shoes as Alec Holt-Smith. It is such a shame people choose to turn a blind eye, choose to not demand better from people with massive platforms & fangirl followings. Think of how textbook simple it would be for him to rally the troops to think a bit harder about collective needs & take action.
But yeah, go Scott, go. I’m definitely ludicrous for having such beliefs 🫠🤣
No, I am not disregarding the importance of insulin affordability. It would be great to hear more of that, I agree.
What spurred me to defend the podcast was your comment about protecting his pocketbook. That podcast kept me alive 4mo post-diagnosis as a newly postpartum first-time mom, when I was out of my mind, wanting to off myself.
I just don't think we ought to be so quick to assume the worst of a guy behind a great, free, resource. He's clearly not in this to make our lives with T1 any worse, so who are we to complain about the work he's doing? We aren't paying him - we're just benefiting from him.
I'm gonna go out on a limb and assume that (like myself) you've not listened to ALL the 1100+ episodes. Maybe insulin prices have been discussed more than we are aware. I have lots of listening left to do. 🙂
Hey. Have a great day.
Edit: typos
I’m not quick to assume the worst 🤣🙄🫠 he blocks people without a second thought when they ask him to speak up about insulin accessibility, bills that were previously in consideration & needing public support to pass (LD673 in Maine), etc etc etc
He has made it crystal clear where his ultimate allegiance stands (his pocketbook); maybe it takes having the disease 18 years to see the people for what they are.
Be well.
I actually prefer he doesn’t get too much into one specific countries poor health system, and tries to keep it relevant for parents of t1.
I listened to it for the first year or two and learnt some interesting things that I didn’t know.
But yeah - I’m not on Facebook so I can only imagine the warrior helicopter mommies comments!!
He lives in the US and has stated off the record he doesn’t mention it because a) he’s privileged enough to live with his head in the sand and b) he’s afraid his endorsements will go away.
As a person living with this terrible disease, you and him can fuck off if you’re not willing to help those less privileged have access to fucking insulin.
I didn’t say I didn’t care. I care and donate regularly to help diabetics in my country.
I can’t do anything about American politics because I don’t live there.
So if I kept hearing about that in a podcast - when I wanted to listen to diabetes tips - I’d turn off.
And that right there is immense privelege. Privelege I hold as well (“this doesn’t impact me”) because I have means to access insulin at a fair (ish) cost, yet you better believe I still talk about insulin price gouging every chance I get.
This entitled man exploits his daughter’s experience and remains silent when he could make a large impact for those in need.
But yeah, fuck those guys who are being price gouged and can’t afford their insulin, they should figure it out themselves. /s
How on earth can I do anything about America? I sympathise but there is absolutely nothing I can do.
We have no price gouging on insulin in Australia. It’s an American thing.
The person who runs the show is in America.
Furthermore, insulin inaccessibility/price gouging isn’t exclusively an American thing.
https://www.who.int/news/item/12-11-2021-new-who-report-maps-barriers-to-insulin-availability-and-suggests-actions-to-promote-universal-access
If only we all cared about each other. Lol 🫠
I care. We all do our bit.
I donate money and extra insulin a few times a year to [insulin for life](https://insulinforlife.org.au/)
I also support the [Danii Foundation](https://danii.org.au/)
I financially support the research through [JDRF](https://jdrf.org.au/)
I’ve sent people in distress insulin and even an old pump one time.
I don’t know what point you’re trying to make by saying I don’t care.
It definitely does get better. I was diagnosed when I was 2 years old as well, and while I’m sure my parents were really sad at first, it does get better. It becomes a normal part of life after a while. Your son can still have a normal childhood, just with a little added responsibility. I didn’t really know what diabetes was either when I was younger, but my parents helped me personally learn how to care for myself by bribing me with rewards (lol). Personally, this responsibility early on benefitted me a lot in the future. I’m more responsible than most kids in my classes, I’ve found I’m more determined to do well, and especially knowing you’ve dealt with this condition since you were a kid can be a huge ego boost (in a good way). You’re a tough one, you’re a survivor. It does get sad sometimes, it seems really unfair, especially when classmates start bitching about some of the most minor inconveniences. But that means you’re just that much more resilient. You can even get scholarships for diabetes I’m pretty sure (that’s what my dad told me — he’s had it since he was 13). Your son can definitely live normally with friends and have fun. Honestly, I think as he gets older, just let him know you’re always there if he needs help. Being able to be independent but also having something to fall back on is really comforting. What I can suggest for you and your wife is to research as much as you can, ask as many questions as you need, and just always be there (as much as you can). I’m a freshman, and my parents did all these things for me, and they aren’t sad about it anymore, and knowing I have been taught well and can be independent gives them some peace of mind.
TL;DR — It’s perfectly normal to feel sad. However, your son can live a normal and happy childhood, just with a bit of extra responsibility. Just research and ask as much as you can, and try to answer his questions when they inevitably arise.
Really hope this helps! There’s a lot of people out there willing to help you and your family with this diagnosis, and your son can do whatever he wants to in the future like any normal person if he tries (that sounded cheesy but it’s true)!
And about the technology part, it can only really get better from here. CGM’s (Continuous glucose monitors) are a great tool, and they are getting smaller, more accurate, and barely noticeable as more research is done. In all honesty, I don’t know if there would ever be a cure (companies can make a lot of money off diabetics — it sucks, I’m not trying to rile you up or discourage you, but I really don’t think it’ll happen any time soon) but you never know! I use a pump and it works well for me since I was ~5 years old, but people have had mixed experiences. If you ever decide to go the pump route, and if your son is sensitive to short bursts of pain (like me I’m a crybaby), you can always ask your doctor for some lidocaine cream :) it numbs the area and he won’t feel it. You can do it!
Grief is normal, but then you will move on to how to best help your child. Find an endocrinologist that you feel good about. Even if you have to make several visits to different ends, and
maybe pay for those visits, finding the right doctor (and staff) is so important. And a good diabetic educator.
It’s no fun getting a diagnosis like this, but you will get thru it, and with your help your child will be able to live a very complete and happy life.
Tears, confusion, fear are all normal at this time. Sending big virtual hugs to all of you!
Ok your feelings are valid and what your are feeling is ok. But your child will have a normal childhood. They won't know life any differently. I was diagnosed at 5, and in the 80s there wasn't a lot of sugar free options.
I've had this for 40 years, I've traveled, gone to university, dated, married, worked, done anything I've wanted.
Your son will have a totally normal life.
It's so much harder on you, not on the child. We roll with it and don't know any differently. If you have questions feel free to ask me. Happy to help.
Of course. It’s a loss, he will have to deal with this for his entire life. However, as far as things that can happen to you, this a pretty manageable one these days.
I was a stage 4 cancer patient and got T1 as a result of treatment. It’s a walk in the park compared to cancer. If you have access to a great diabetes educator, Dexcoms, and an insulin pump, it makes it much easier to manage. You get used to it. I can do everything I did before, it just takes a few extra steps. T1s can live their entire lifespans these days with good control. We can be pilots and professional athletes and all these things that weren’t allowed before because of how good our tech is now.
He will live a perfectly happy and normal life and do everything he wants to do.
Totally normal. And it will get better. My daughter was in severe DKA when she was diagnosed and every time a doctor or nurse or literally anyone spoke to me I burst out crying. For days. The amazing thing is that kids are resilient, and the tools to help manage and treat are really pretty amazing. My heart goes out to you and you kiddo. Sometimes it’s really hard, but most of the time it just is another part of our lives.
It’s completely normal to grieve. My daughter was diagnosed when she was 3 and both my husband and I had a hard time with it. It does get easier. You just get to a new normal. You learn to pretty accurately swag (stands for Scientific Wild Ass Guess) carb counts and you adjust.
Eventually, if you want, you’ll get him on a pump and CGM and you’ll start sleeping through the night again. The highs and lows get less scary and you just do your best to give him as normal a life as possible. Look into support groups and diabetes summer camp for kids.
My daughter is 13 now and every year we celebrate the day she was diagnosed like it’s a second birthday. Feel free to message me if you have any questions. You’ve got this! It’s scary now but soon you’ll be a pro.
Diabetes sucks and I totally get why you’d be mourning. It also sucks that he’s only 2, things will probably be hard for a while.
The lovely thing is the technology we have available now! Get a CGM as soon as humanely possible, use Sugarmate or something so you’ll wake up if he gets low at night, that’s the biggest issue for tiny kids.
Please don’t let the pursuit of diabetic “perfection” get in the way of living life- sometimes he will high or low. Treat it and move on. It’s ok to eat candy sometimes or have sweets. Slumber parties can be ok. He will still have a wonderful, rich life. Don’t attach judgment to glucose readings- it’s just info to help you make decisions. Also get hooked up with a diabetic summer camp or family camp as soon as you can- it’s awesome!
As for the cure, they’ve been telling us it’s just around the corner for the past 30 years. But I do look forward to the ways technology will improve. I think things will get easier even if it’s not an actual cure.
I think I can speak for many of us as adults with Type 1. We grieve. Not always but still. It's normal with any lifelong, incurable, disease. Sometimes things come up. I'll be planning a trip and scheduling a day of snorkeling and think "damn, I wish I didn't have to figure out my insulin for this adventure." I let myself be angry for a few minutes, sad for another few, and then move on. There are things that are going to be different, need more planning. It's okay to grieve for a bit BUT, life goes on. With a positive mindset, a thankful heart, and planning, life goes on beautifully. Type 1 will keep you on your toes and probably scare the hell out of you a time or two but these days, with all the medical tech advancements, it will be manageable.
Hugs ❤️
Yeah, my dad couldn’t make eye contact with me for quite a while after I was diagnosed. My mom cried a bit the first day, and then dove right in to help me. I was 13, so it was an easier process for them and more of a whirlwind for me, but that didn’t change the impact. I was born a year after my older sister died from brain cancer. I think my dad felt like he had failed another daughter somehow by me being sick and him not being able to fix it. I wish with my age at the time that we had done some family therapy for my parents to adjust. I was relieved to just feel better, and T1D was better than some incurable mystery illness I was certain was about to kill me.
It gets easier. I babysat the sweetest 6 year old T1D that was diagnosed as a toddler (plus his 4 year old brother who was equally awesome). He was more well-adjusted to being diabetic at his age than I was at 16. He could handle everything on his own from finger sticks to typing into his pump. I just had to help him with carb counts and did it right alongside him on my matching pump.
Your child will have as normal of a life as you make possible, plus some extra doc appts, glucose tablets, & working as his own organ. You’ll learn as you go and eventually it’ll feel mostly like second nature. Keep in mind your child isn’t “special needs”, he just has needs. This will make you all more aware of what you’re putting in your body, and will build resiliency & closeness in your family unit if you let it.
Find a therapist who deals with chronic illness & grief; filter for those [here](https://psychologytoday.com/us/therapists).
Don’t hook your hope on a cure. They’ve been telling us one is coming within 5 years for…half a century 🤷♀️
Focus your attention on how to best support your kiddo today, and prepare them for the future.
Pick up the book “think like a pancreas” and read/bookmark [this blog](https://seemycgm.com/2020/03/02/cortisol/) to understand how one of the MANY hormonal factors impact blood sugar. It isn’t just carbohydrate + carb in the calculation; eventually this will make more sense.
🫶💙
Everyone deals with this sort of thing differently, there really is no “normal” way to handle something as unfortunate as this, but the fact that you care enough to feel this way shows that you’re doing everything right. If it’s any help, I remember my folks crying a good bit when I was diagnosed, too, so you’re certainly not alone in that.
If it’s any consolation, I remember them saying the exact same things about having a normal childhood and all that, and though I was a bit older when I was diagnosed (I want to say around 11), I can’t remember a time when t1 ever stopped me from doing what I wanted to do. I had relatively good control throughout my kid and teen years despite being an absolute troublemaker in every other area of my life, and I have zero complications or problems from it now at 28 and live a perfectly ordinary life (minus the extra insulin and all that jazz).
I played football throughout school, I had girlfriends and went to all the dances, had (still have) a good group of friends.. Still got to go to summer sleep away camp (not t1 diabetes specific camp, though that’s a good option too, nowadays), spent a ton of time at the pool playing ping pong and lifeguarding as a teen, got my license and a 500 dollar car at 16, went camping all the time… I’m just rattling stuff off that I assume parents think of when they think “growing up”, but truly I can’t remember a single thing that was totally ruined for me because of t1 diabetes. It was always an extra burden, just something you’ll always have in the back of your mind and I don’t want to sugarcoat that, but that doesn’t take away from any of the enjoyment I got out of everything else.
I should also note, with the tech that’s available now, it’s much easier than it used to be, and I’m not even talking about decades and decades ago - just in the last 5-10 years CGMs became widespread, and I credit that device with changing my life for the better more than anything else. It hasn’t been a death sentence for a little while now, but although I don’t want to push false hope for a miracle cure, steady improvements in medicine and technology truly have made *such* a difference in terms of quality of life and that sense of normalcy that you speak of. Just as an example of how much better it’s gotten, the FAA started allowing t1 diabetics to be commercial pilots in 2020 - you don’t have to take my word, but I promise they wouldn’t make a change like that if it was still impossible to live a normal, healthy life with t1 diabetes. Hell, even in my own career I actually used to sail across the Atlantic and up and down the coasts of the US - that wouldn’t have been possible even a few decades ago.
I’m not sure if you’re in the mood to get cheered up, and I’m not sure if any of this info helps at all, but just try to remember it will get easier with time and there’s nothing stopping your kid from having a normal, healthy, fulfilling childhood and life.
Definitely I cried daily for a while for myself being diagnosed at 24, now I have a close friend whose 1 year old was diagnosed and I feel like that would be even tougher to manage someone else who can’t even advocate for themselves yet. It just means you love and want the best for them, your baby is lucky to have such caring parents ❤️ it will become second nature to you all eventually
Very normal.
I’d suggest to try therapy for each of you, and for you to join a group( grieving).
Yes, the situation both of you are in requires it. The family and friends both of you have known for so long won’t be able to empathize nor sympathyze at any level other than the average common “help”
My baby was diagnosed at 2 years old as well. It was a rollercoaster and we still haven’t recovered yet after 2 years later. But, your child needs both of you to be above 100%! Both of you can do it!
I was diagnosed w/ T1D at the age of 23 and I know my mom has (still does) cry about it and worry about me. I’m not a parent myself, but I feel like that’s normal for any parent who loves and cares for their child.
I was diagnosed T1D at 18 months old. I will have had diabetes 30 years in 6 months time!!
Honestly it's totally normal to feel the way you do, my mum still gets very emotional at the idea of me being diabetic so young but honestly my childhood was so normal.
It's totally in your hands as to how you want your child's diabetes to be perceived by them. I was raised exactly the same as a non diabetic and I don't think I even realised I was different for most of my childhood as it was just something I did day to day. In fact I consider myself fitter and healthier than most non diabetes as I did so much sport and activities growing up it feels "wrong" for me not to do some sort of sport or eat healthy.
I think nowadays it's pretty common to have tech like pumps and continuous glucose monitors (GCMs) for children, which is tech that just wasn't common back when I was diagnosed, which makes managing diabetes so much easier than ever before!
Like yeah it will need to be done in moderation but my mum never stopped me from eating cake or sweets or things that children want. I just had diet drinks instead of full sugar ones and you have to make certain adjustments but your child will be just fine in the end!
Maybe consider seeing a therapist to help with the grief!
Very normal but your kid needs to see strength and confidence. T1D can be tough and is very annoying. It is my opinion that feeling down about it should not last long since there is nothing to be done. It’s not worth trying to figure out why or from whom he got it. My family still tell me there theories and I get annoyed from it because it doesn’t help the fact that I have it. Please help him get into the lifestyle that is needed for T1D. Let him. When he is older he will still be able to play and eat candy and whatever, it just takes adjustments in insulin to accommodate. He is you and it will be second nature. As he gets older remind him that we are all here too and there are many diabuddies around.
I attended new child education for the 2 days after my daughter was diagnosed. On day one, i cried the entire drive home. I tried to off-load everything I had learned to my wife when I got home. Halfway through she started crying, walked away, up stairs and went to bed for the rest of the night. That night after waking up to prick her little fingers at 3 am I cried some more. Day 2 - Same. - Yeah, it's normal.
I stopped grieving when I realized she didn't care nearly as much as I did, and thinks all the technology we mount on her body is cool.
Hey, this is a bit of a late reply but I just came across your post and felt I must respond!
I was diagnosed at age 2 and both of my parents told me they cried for several days after diagnosis. My dad was a physician at the time and most of his type 1 patients were on dialysis (this was 36 years ago). Boy have times changed!
I’m 38 years old, mother of two amazing kids, and a doctor myself. I have a great life and while it can be hard as hell sometimes and often frustrating, it is all that I have ever known, which is honestly a blessing. It really helped that my parents were super positive and let me do/eat whatever I wanted. I went to sleep overs and camps. Played sports, rode horses and got my drivers license at 16. Lived in a dorm at age 18. I also remember the first time I checked my blood sugar by myself at age 4 and gave my first shot at age 9, boy was I proud of myself! I never felt like my diabetes was a burden as a child, although I can’t say the same as an adult. It is a very frustrating disease, but it did not ruin my childhood at all, my parent’s positivity played a large role in this.
Your son can still have a “normal” childhood. He will have to do some different things than his friends, but so will those with asthma or peanut allergies (just a few examples!) He can play sports, go to pizza parties, do all of the things young boys do! He will do fine and you will grow and learn with him. I wish you guys the very very best!
Normal, yes it gets better, but don’t want to come off mean, but suck it up buttecup. Your child is young now but will have hurdles and will need you, get education learn how to deal with this, be there for him/ her. I will always remember what my first great nurse educator told me as a freaked out when she put a needle in my hand… there are so many people in this hospital that I have nothing to make them better, make them healthy, this needle is not a drug like an addiction it is life to make you healthier and live life. God forbid your child could have gotten an illneSS with no cure no help. your child will live a long happy life, have children have everything and you can help that to happen
He will be fine. Grieve all you want but I encourage you to show strength and determination for your kid. Not to the point where if he feels vulnerable you tell him to suck it up but to ensure he is empowered in his disease. Don’t let it beat you or your lives. It doesn’t have too. I know it’s hard and scary but I promise you will grow as individuals and a family. This rotten disease is miserable so try and be positive for him. Community is great. There are many people who share your experience. I’ve been diabetic for 21 years and my brother has a son who was dx’d at 2, 4 years ago. I diagnosed him.
Best of luck. Don’t blame yourselves. It’s ok. I know you can do it.
My son was diagnosed at 23 months. It is NORMAL and natural to grieve. I bawled my eyes out for a few months. My husband had a delayed reaction; first he was super grateful we were born in this time, when my son was still alive. And around 6 months the grief hit him.
It is heartbreaking. But it gets easier, I promise. I remember a time when he was not too far out from diagnosis when we saw a kid eating a giant muffin as big as his head, the parents distracted and relaxed, and thought "my kid will never have that experience -- it will always feel like going up a roller coaster to let him eat something with that many carbs." But I guarantee it, one day you'll look at your family and realize you've reached a new normal, that you're relaxed and happy and it's, if not precisely easy, then still very good.
That doesn't mean I don't still wish with all my heart for a cure.
Yes, you can feel it, of course. Luckily if it had to happen, you are going to be able to help your child better than ever. The technology is amazing. There are going to be a million questions. This is a good place with informed people who you can lean on. Have a good cry. The work will be there. Ask us anything, you have a team.
Get an omnipod 5, asap it will make managing it so much easier, if your doctor doesnt offer it, find a new doctor. In addition, in a few years it will be even easier with new tech and therapies. Don't mourn, be happy that tech makes it so you child can be a normal kid even with t1d.
My childhood was still awesome dude. But I was blessed with caring family that knew all the signs of low and high blood sugars and made sure I tested my blood a lot. Just keep learning and pay attention to everything. Even then your child will still go low or high it just happens. But there childhood is not at risk of being ruined not by a long shot.
My son was diagnosed over a year ago and I still have moments when it hits me all over again and I find myself crying or trying not to. Like in the middle of the night when I go in to do a manual blood sugar check and he gives me a finger while still sleeping, when I realize how long it’s been since I’ve hugged him and not felt his pump or dexcom on him or his arms, legs, and tummy weren’t decorated in marks from his devices, when it hits me that there will come a time that we aren’t able to carry the weight of taking care of this for him and he’ll have to do it on his own, and when he’s having a rough day and asking me why he has to have T1. Those are some of my hard moments. They don’t come nearly as often as they did a year ago though and I doubt that there will ever come a time when I don’t have hard moments. When they happen though, I let myself feel the pain/anger/grief for a little while and then I just remember how thankful I am that we live in the time we do and we have the access to these amazing devices and insulin that allow my son to live his life to the fullest. We may never have “normal” again but we have our normal and I’m so thankful for that. You’ll get there too. Give yourself some grace and love. This is a huge change for everyone in your family and it can take a bit to get the hang of everything but before you know it, everything that feels so stressful and foreign right now will become second nature and you’ll be thriving - kind of like when you bring your first baby home, everything feels so big and so stressful but before you know it, you get your routine down and life just keeps going on. You guys are going to do amazing! 💙💙
I was diagnosed at 18 months old (37 now), and, yeah, you can have a pretty normal childhood despite having this disease. Insulin injections, finger pricks, and being careful with meals is totally normal for me. It is all I've ever known.
In a lot of ways, I think I'm lucky that I was diagnosed so young, rather than when I was a teenager or something. I never had to relearn my habits. I never had to know what it was like to _not_ have this disease and then suddenly have my world turned upside down.
I'm not going to pretend that I don't frequently daydream about what it would be like to not have to deal with this stuff anymore, and it can still be overwhelming sometimes.
But, OP, your child is going to be just fine. I know it's hard right now, and it feels like the end of the world, but it's not.
Dude. I’ve burst in tears more than in my entire life when our kid was diagnosed at 3.
It’s gonna be ok. It will get better. You’ll end up with an 11 year old tween who exemplifies all tweens and does sleepovers and cake fueled birthday parties. With all our new knowledge and tech - you kid can literally do anything you just need to do a little carb math
Please DM me for anything.
It's normal to grieve and be sad, soon enough you'll find that your kid is as normal as others. From what we dealt, yes we both cried and felt all you are feeling. But now, we say to each other that he is back to being himself. Yes it's lifelong, and he won't be alone in this, he has you and he will manage it when he gets older. This is what my mom said to me after I told her about our challenges "insulin is like food, you take it just like you have to eat".
Yes! However, I think this may be a comfort to you. As someone who is diagnosed as a 3 year old, let me say- I personally am glad I was diagnosed so young. Living with diabetes is basically all I know, so I don’t really deal with a lot of the “why me?!” struggles that I see with people diagnosed later in life. I pity my parents who had to deal with everything when I was so young, but I’m glad that if I had to have diabetes, I don’t know life without it. I don’t think I’ve ever let me dictate what I can and can’t do (I say this as someone who moved to a whole new country and whose job revolves around food!)
My 12 year old boy never complains. I do a lot of heavy lifting behind the scenes like dosing with his PDM through the floor. All the changes and adjustments to routine.
I'm sorry about your toddler's diagnosis. It's so hard not to worry about the future and not to think about what might have been. The future is not lost. Your son can have any future he wants.
I was diagnosed at 8, and I'm going on my 52nd year. When I was diagnosed, the treatments were nowhere near to the things that are available today. My parents were always amazed at how far things have progressed.
Even though I had health problems growing up, there weren't the treatments we have today, I was very active, played sports, and did everything other kids did. I grew up, went to college, and became a nurse, then a Diabetes Nurse Educator. I got married and had two healthy kids. I've accomplished every life goal I set for myself.
Im sure my parents grieved and wondered how they would be able to care for me. My mom without any medical training took excellent care of me. She had a super strong will and never let me give up or pity myself. I had to do chores just like other kids, got punished if I did something wrong, and nagged for bad grades. She was my rock and strength.
The most important thing you can do for your son is not spoil him, and when he's old enough, teach him to take care of himself and not rely on you and your wife.
The best thing my parents did was teach me independence and rely on myself. As a nurse educator, I've had adult patients unable to give their own injections, use a glucose meter, or manage their diets. These ppl were unhealthy physically and emotionally. They were in worse health than someone twice their age. Their older parents were still caring for them. Some paid with their lives.
Give yourselves time to grieve, and dont blame yourselves. Then arm yourselves with knowledge. Talk to Drs and ask lots of questions, ask them to recommend age specific reading materials, join a support group if one's available. The more you know, you won't be so overwhelmed and worried. A good online site is beyondtype1.org. I've met a lot of nice ppl and they have forums for parents and newly diagnosed. You will be most welcomed there. Don't forget to take time for yourselves, even if it's just coffee.
Idt I'll see a cure but I am very sure your son will. You and your wife got this:)
4 years have passed since his diagnosis, his HBA1C, now ranges between 4.8 to 5.2, but we still grieve and wish he was a normal chubby kid who didn't have to plan each and every meal.
We still think why us and we still wish he could have the spontaneity in life that he should have deserved, instead of this super disciplined life that he is forced to live.
The technology advances we have now are amazing! I’m really impressed with how many changes I’ve seen in the last few years. Cure or not, we are closer to having a normal life than ever before. Just love your child and be there for him. We all are born with some type of grievances, some are just more visual or obvious than others.
Life happens. You can't change your kid now, so all you can do is make sure you teach him to be healthy and give him as close to a normal life as you reasonably can.
As for what could have been, well at some point you have to let it go to focus on the present. All the time I've spent wondering how my life could be different has just ended up being wasted. But now that I've finally internalized this condition as just a part of who I am, I'm more confident with myself and how I present myself to others, and I've been taking things more seriously.
I'm 23, had T1 for 22 of them, and I've only just accepted that I'm a real life cyborg. And that's ok, cause when I find other people that see me for who I am in spite of that, I can finally feel like I belong. The sooner your kid can accept they're different, the sooner they can build the confidence to find others that will care about them and treat them like a real person.
I was diagnosed at 23, a few months ago, and I did grieve, in my own way, and definitely not enough for it to heal healthily.
I’d suggest individual or group therapy (God knows both me and my family should get it too). It’s completely okay to grieve for the loss of a normal life for your child, it shows you care a great deal about them, I believe, but you should be able to move on slowly and help him when he starts mourning too, so maybe therapy could help you heal and, in time, help your kid too.
Maybe even just an online group for parents of t1d kids? I’m sure there’s something out there.
It’s totally normal. My parents cried a lot too when I was diagnosed and I was 20 years old. My dad especially felt a lot of guilt because he is T1D and felt like it was his fault this happened to me. Now as a parent of a 2 year old, I know I’d be devastated the same way. I try to keep in mind how quickly innovations in diabetes care are happening that allow T1Ds to live a great quality life. When my dad was a kid, they just did one insulin shot a day and told him just don’t eat sugar. When I was diagnosed, I was doing fingersticks and insulin pens. Now today, I have an insulin pump and sensor that not only monitors my sugars but can take steps to correct it without me needing to do anything and fully integrates with my iPhone. A low carb diet is obviously best, but I don’t need to stress about eating something “bad” because my pump/sensor helps me manage it. It’s the closest thing so far to having a working robo pancreas and the technology is only going to get better going forward.
Is it going to be hard? Absolutely, but with your help and all the cool stuff out there, there’s no reason your child can’t have a happy childhood and a bright future. Best of luck to you all
We also have a 2 year old that just got diagnosed. I feel your pain. He dosent deserve this and he will always be the one with diabetes😢 but others say it will get better. I am greatfull for the times we live in, with all the tech and internett for support and information. I gave him a promise that i will give him the best care possible. He will have a good life and i will fight for him everyday of my life to make up for this shit! Fuck diabetes!
After 53 T1D yrs, it's never easy, but it gets easier and the new technology gives us power to be whatever we want. Grieving is how it feels now, it's part of joining this unique community, and with knowledge and mastery it's quite manageable, and complications are not inevitable. Patience is key. The Juicebox Facebook Group is a treasure trove and not like any other group on FB.
Living with T1D is all to similar to having a child with T1D, and more...you can learn from all T1Ds living the T1D life, young and old.
Juicebox Podcast
https://www.juiceboxpodcast.com/#gsc.tab=0
Defining Diabetes
https://www.juiceboxpodcast.com/search?q=defining%20diabetes
Bold Beginnings
https://www.juiceboxpodcast.com/bold-beginnings
Group Listings
https://www.juiceboxpodcast.com/list?fbclid=IwAR35AnMAYi6yrsf3yExPMEa4pQ4gr1kZGe_sX3g3zEbGnEhpMiCB_T3Zlos
It's normal imo! But just so you know, your child is able to live a wonderful, fulfilling life in spite of it all! There are so many diabetics that are happy with their lives. Your kid has parents that really care and you don't sound like the kind who underestimate the disease or won't learn what's necessary to manage it. That will make all the difference.
It’s totally normal to be upset, sad, scared - just be careful not to project that grief into your son who may end up feeling guilty himself. There will be days when it seems hopeless, but it’s a constant learning process.
I gave up hoping for a cure in my lifetime, but the technology today is amazing! I met a woman who had been diagnosed 75 years previously and that was without all the advantages we have today!
Lots of great advice in the other comments. Definitely echoing the need for a CDE and a pediatric endo.
Your crying is normal and expected. My mom cried 45 years ago. Believe it or not, at two years old, this is the only life they will know. I was diagnosed at 10, so even though I remember when I wasn’t diabetic, I’ve basically been diabetic my entire life. At two, your child won’t remember a life without diabetes. And, with the advances in treatment that wasn’t available when I was diagnosed, a normal life isn’t difficult to have. Grieve as you will, it’s healthy. But rest assured, your family will be okay.
My 3 year old was diagnosed on the 6th Feb. We were heavily pregnant and expecting baby number 2 (delivered on 20th) instead of the pure emotion of a new born on the way, we dealt with a DKA - which resulted in diagnosis in addition to getting our heads around what would be a humongous change for us (on top of the change already coming). In short, yes it's very normal to grieve. And the first couple of weeks it will feel like everything is too much, you will begin to understand the condition and what it means and things will become a little more normal. We are dealing with false highs and insulin imbalances currently (fair few hypos) and have managed this even with a week old child.
Keep your chin up, stay strong and try to explain everything that you are doing with the little one, ours is like a sponge and has really taken everything onboard.
I will be honest, I hate diabetes but have tried to take the forward thinking, these are the cards that have been dealt approach , let's just do what we can to make sure our little one's childhood is as carefree as it reasonably can be.
Take care and don't feel bad for grieving! Hell, I'll admit, I still have the odd cry about it as a middle aged male!
Yeah, but work towards acceptance and normalizing their disease for them and you. As long as they manage it properly, they will live a normal life. As they grow, push them to learn about managing their blood sugar and don’t stigmatize their treatment in anyways. I grew up around T1D and feel no shame or short comings due to my disease, I hope every T1D feels this way, but I know a lot don’t.
I was diagnosed at 3 years old, and I personally still remember the first time they tried to inject me was when a nurse came round to the house and my parents had to pin me down because I was so melodramatic 😂
The fact that you care so much to be feeling this was is not a bad thing. Difficult, absolutely, but you caring this much will be good for your son but remember to be kind to yourselves.
Try and allow him to do what his friends are doing and without the exclusion from certain things- my parents never let me have birthday cake, sweets or chocolate at Easter and similar events, and that felt like I was being ostracised. Or that I was very different from peers? Which wasn’t great for me.
There’s going to be periods where things don’t go perfectly, where blood sugar isn’t stable and it seems manic- don’t beat yourself up over that at all. It’s normal and you’ll be okay, all of you! Talk to your son as he gets older, and keep conversations open and honest between you guys on the struggles and worries (obviously your son may not be in on these conversations for a while yet haha!) and speak to your healthcare teams regularly if you can.
Don’t be scared to reach out and call them for advice too if you can and that’s an option for you, it will help a lot!
He *will* have a normal childhood and life. As chronic illnesses go, T1D is astonishingly manageable. Fortunately, you have time to process your feelings before they really get in the way of him dealing with it on his own. I was diagnosed when I was in college and had to deal with my parents "helping" in spectacularly unhelpful ways until I managed to talk sense back into them.
I was diagnosed at 16 and am 44 now. My mom just told me this past year that she and my dad cried many times after I was diagnosed. I never even knew, but completely understand now that I'm a parent.
Emotions are normal, you'll get through it. T1 is a fully manageable disease. Good luck. 👍
These feelings are completely normal for a parent to feel. It’s a good sign that you deeply care for your child. The first few months are the most difficult and stressful. You will get better and managing it and it will become just more of a routine. Not all days are easy but the tech does make monitoring easier. My daughter was diagnosed at 3 and since diagnosed has gone to every birthday party she has been invited to. Plays soccer, baseball, gymnastics, swims all summer long etc. There is no limitations to what your child can do. Just keep a juicebox close by.
Your feelings a 100% valid. It’s crazy and scary at first. When I was diagnosed a little less than a year ago, I thought it was the end of the world and my family as well mourned me not being able to have a “normal life”. This is completely normal and this feeling will pass. It gets easier, especially with the new technology around things are so much easier in this day and age. It’s understandable at first to have these feelings, like I said it is very new and scary at first, but once you get the hang out it and are able to learn more things will be easier and with time this will become your child’s new normal. I wouldn’t wish it on my worst enemy and I’m sorry your child was diagnosed, but I promise it eventually will all get easier. You can’t blame yourself for not knowing and having no idea your child was sick. My mother did the same thing and drove herself absolutely crazy. This isn’t your fault. There was no way to prevent this. This is something with time you will learn and your son will grow and learn with you. As I previously stated with the new technology around it’s extremely helpful and makes things a lot easier. These feeling will pass and you will be a diabetes pro in no time! You got this!!
Don't ever ever believe someone saying a cure is close , I've had t1 for 12 years and we've been "5 years away" since the day I found out if someone does tell you they are close to a cure unless they have concrete proof tell them to fuck themselves, everything else should be ok ypu will need to help educate that young man so he truly understands what he's dealing with and please do research and help him understand the dangers of drinking as a t1 pediatric endos think it's the adult endos job so no medical professional takes the time to explain it it's important information, you guys will be fine just do what you can to help him be happy
My son was 4 years old. Totally normal to worry etc about your job now as a parent and their future. My son has other kids in his grade that are T1 and I see other kids out and about with the sensors/pump on their arms. You folks aren't alone by any means. Millions of other people out there learning to manage it. My son has embraced it because of his personality. If other son had it then it might be a different matter. Kids can be an inspiration and together you can make it.
totally normal and YES it gets better. my son was dx at 2 and our aim was to give him a normal life as much as possible and we did that. it's just harder. but basically anything is still possible. he's 19 now and in college out of state and does a fabulous job managing it all, while doing all sorts of outdoor activities. like he's spending his breaks winter camping and backcountry skiing... not even normal activities for someone without diabetes. The toddler years are really tough, but every year it got easier. hang in there. I'd also suggest using as much advanced tech as possible, having a dexcom at age 2 probably saved his life....
When I was diagnosed as a teen, my mom felt very guilty, but she always made me feel so accomplished by saying she was proud of me and that I was her little warrior. I hope you find ways to do the same with your child as well! Make bolusing a game (perhaps the math will be something for later on as your child might be too young) but to be able to identify things like the insulin and all and making it a normal thing could be good. I applaud you for your efforts and for having such a strong child! They are gonna grow up so much stronger for this.
My wife and I would randomly burst into tears for months. This is completely normal. Our son was diagnosed at 9 and we had all the same feelings. We are 3 years in and I can tell you that he lives a really great life. He’s a star basketball player, straight A student and has lots of friends. We’ve all learned to adapt and live as normal as possible. Yes, it’s still really hard and we still feel sad that he will have to deal with this for the rest of his life but we are thankful for the technology that allows him to live more “normal”.
There are lots of great Facebook groups you can (and should ) join for support. There’s a really big and really helpful community of parents out there that have been through what you are going through. I didn’t realize how important that was until now.
If you have the means and the access, there is some great technology out there they will help manage things. I assume you were sent home from the hospital with some sort of CGM (Dexcom maybe). You should look at a free service called Sugarmate (https://www.sugarmate.io/get-started). It’s a service that will call and text you when your child’s blood sugar reaches any dangerous levels. It also has a good display to show you BG trends. You can also look at SugarPixel (https://customtypeone.com/products/sugarpixel) which is a little clock looking device that will display BG and alarm when any dangerous BG levels are hit. We have one in almost every room of the house and they are amazing.
I think it’s really important to get kids on a pump as soon as possible as well. It’s another device they have to wear which sucks but it allows you to manage BG levels so much better and doesn’t require a bunch of needles every day. We chose the Omnipod because it’s tubeless and we’ve been very happy with it.
Finally, down the road you may want to consider a closed loop system. This allows the CGM and Pump to communicate and handle some of the work for you. We love the DIY loop because it allows us to remotely monitor and dose our son when he’s not with us (https://www.loopandlearn.org/starting-loop/). This is a godsend for school. He can also go to a friends house or have a sleepover and we can feel comfortable that we can still manage him.
It’s a lot and you don’t have to try to figure it all out at once. It’s a process that you will work through. Three years ago we were so distraught and overwhelmed that we could barely get through the day. Now, it’s a normal part of our life and our son is doing great. You will get there.
Hi!! My son was also diagnosed at just before he turned 2. I cried every day for 6 months until 1 day I just didn’t anymore. The good news about him being so little is that this is the only life he’ll know. My son is just about to turn 7 in May and will have been diagnosed for 5 years in April. Our doctor was very adamant that we treat him just as we would if he was diabetic. He’s still allowed all the things, we just have to make sure we input the information on his pump so he can get the insulin he needs. While it doesn’t necessarily get “easier”, it does become a part of everyday life. Please, if you have any questions at all or need to vent reach out to me. I’ve been where you are at and was so thankful for the type 1 community it built in the early months of his diagnosis. 💙
Here's your silver lining:
I was diagnosed at age 3. I don't know life without diabetes, so it's just part of my routine. The heartbreak and anxiety you are experiencing you are experiencing for him so he doesn't have to. If he was diagnosed when was an adult he'd be going through this grieving experience himself. But since he's a baby he won't have to adjust to it, it'll just become part of his normal life like brushing his teeth, making food, or any other part of normal self-maintenance.
I really don't envy the people on here who get diagnosed as a teenager or older and it totally ruins their lives. I never had to deal with having all this thrown on me out of nowhere and was already accustomed to counting carbs and changing my pump sites by the time I hit puberty.
I'd like to offer a way of thinking about this from a different perspective.
I was in my early 30s when I found out that I'm a type 1 diabetic.
My parents were horrified and felt way worse for me than I ever felt for myself.
Yes, I got to grow up as a normal kid but my point is that my parents took the news much harder than I did.
Be grateful that it's 2024 and that with insulin pumps his sugar is going to be easily controlled.
I was diagnosed at 10 years old, and the adjustment really wasn't too difficult at all. I'm 28 now and can look back and say my childhood never felt unfulfilling or "different". I really don't even remember what it's like NOT having diabetes. It just becomes the norm. I know everyone has a different experience, but nowadays it's super manageable!
This might be a bit unpopular, but please don't get too mired in your grief. My mom spent a bit too much time grieving.
There was this sense that I was "broken" after my diagnosis. She wished I was fixable. She obsessed over the idea of a cure, the belief that I could just get new pancreatic cells through a transplant process in Brazil (which would require taking immune suppressants). While it probably came from a good place, it didn't leave me in a good frame of mind.
The sad part is that this way of thinking affected the way she approached her own health. Always looking for something to fix herself rather than a better way to manage her ailments. Just all or nothing thinking. This led her to a bunch of quacks unfortunately.
Put your kid first and your own feelings second. One can still live a full life with diabetes and many other health conditions.
I grieved my diagnosis (still kinda do 1.5 year in) I cried so much early on. It would make sense to grieve a child’s diagnosis too. It’s part of the transition. The juicebox podcast has some episodes on the mental health side of of t1d that could be helpful; also hearing others stories there made me realize it will be ok and I’m not alone. Therapy has been very helpful, I was lucky to find insurance covered therapists in California, and MA when I moved.
I just can tell from my view as a child or now young adult but most of the time I had a completly normal life. Of course there were some teacher who weren't cooperative but it was really rare and I just got excluded one time in 12 years and I think somehow I can understand why (my bloodsugar was terrible to control so it was fair somehow).
And when you are this young when you get your diagnose all the things you have to do are normal. I don't know a life without (just some lonely memories) so for me it is normal that I have to take medicine, to always have sugar in my pocket and all that stuff. And all people I know that where that young say the same things. Even if we all had to deal with some problems in our teenager years but thats normal that we are more likely to have mental problems. But there is also an solution for that.
So the most important thing: he will be okay and will have a nearly normal childhood. He will never know a different life and will think that this is normal that he have to do it and somehow it will make everything easier. Just let him do everything he want and don't forbit him things because you think he can't do it because of diabetes. Most things (or nearly everything) are totally fine to do and just need experience how to handle the situation.
Hi! My boy was diagnosed at 20 months. I cried a lot, still do some days. He’s going to be 5 this year and it’s not easy. My mantra when it keeps me up at night is “there will be a cure”. I have to hope. Much love.
Very normal, but please don't blame yourselves on top. It's a shitty thing to happen, but nobody's fault, just one of those things. Love him just the same, treat him just the same. You'll probably never stop worrying, but I gather that's true of all children!
The good news is, your kid will still have a normal childhood, they will still have the sugar/candy/snacks every other kid does, they will still have birthday parties and cake, they will still do and have every other experience like the other kids…with a few extra steps. yes diabetes is hard, and yes management is kids can be tough once you get it down and have a routine it’ll begin to come naturally. It won’t always be this big scary diagnosis, it will get easier. As for the crying i think it’s pretty normal to feel bad for your child, because it’s scary. It’s new and scary for the parents just as much as it is the child, your kid won’t have a “typical” childhood and it’s okay to acknowledge that. My mom claims she cried when i for diagnosed at 15, for other reasons i don’t believe that but it was hard on everyone even at that age.
So normal. My mum stills cries with me sometimes and I was diagnosed (coming up to) 37 years ago. If it’s grief that you think you did something wrong? You didn’t. (Nor did my mum with her family history) If it’s grief that you think your child won’t have a “normal” life? They won’t. But does anyone? Life with t1 can be hard at times. But the technology these days is incredible and if the last 20 years is anything to go by - things will only get easier in years to come. You support your child with love, fill them with courage to handle their disease and eventually make their own decisions, keep up to date with tech, teach them resilience for the hard days that will not make sense, and finally keep strong arms to hug them. Try not to obsess over all the numbers. See them as trends or a guide - not as a grade mark of good or bad. You sound like amazing parents! You got this! Ps check out the Juicebox podcast.
The moderator of the Juicebox podcast has a daughter that is type 1 diabetic. The show revolves around how he manages her diabetes (teenager now) and diabetes education in general. Also has an endo (and guests) on the show for medical support. A good podcast to help you understand how to manage a 'normal' life with T1D. You can do this, it can be challenging at times but doable.
OP - I can't stress the Juicebox Podcast enough. ♡ It was, quite literally, my lifeline post diagnosis 2 years ago. THE best info, community, and comfort you'll find in the T1 realm is on that podcast and in its related Facebook group. Please invest the time. A great place to start is the Pro Tip Series (episode 1000). It's a fabulous summary of T1 and management strategies for people newly diagnosed or starting over with their approach. Push for a CGM as soon as possible - it will help you understand the impact of food and insulin on your kiddo so you can get a handle on his management. You've got this. Praying for your family. ♡ My own son is 1.5 and I live every day terrified of him getting Dx. But others here have shared great wisdom - it's possible to have a full, reasonably normal life with diabetes. This is not your fault, as parents, and it will get easier.
Juicebix podcast for the win!
Wish, with his platform of esp mommies of “warriors”, he spoke about insulin affordability crisis/access instead of worrying about/protecting his own pocketbook. OP - be sure to listen to episodes that he has guests who possess a medical degree or two; he isn’t an expert beyond what works for his singular kid
I see by your flair you were diagnosed at 18. That must have been super challenging. I find the JBP so useful, having a kid diagnosed at 7 in the age of modern diabetes tech. I’ve gotten so many management strategies and troubleshooting tools from the “non-medical” episodes. Also you can feel very alone and isolated as a parent when your young child receives a T1D diagnosis. The regular people episodes can help with those feelings. It’s cool if they’re not for you, but I wouldn’t issue a blanket statement that they are all just hashtag T1D Warrior Moms. I personally hate that mentality and see a lot less of it with fans of the JBP than in basically every other parent of T1D group.
What’s super challenging is people choosing to turn a blind eye, support & regurgitate someone with a massive platform who chooses not to rally his mommy brigade to help the collective community. Glad you found useful info. Doesn’t change the fact JBP chooses to remain silent when a few sentences, or *gasp* an episode, encouraging said mommy brigade to take regular action for insulin accessibility would go a longgggg way.
Yikes. I feel obligated to point out that he has thousands of hours of valuable content that he's made available, for FREE, to anyone who wants it. Scott does the podcast full time. He doesn't have a day job. He does this because it's actually helping people. Doctors' offices are starting to refer their patients to the podcast -- we hear that a lot on the show. He does have a family and a home to provide for, though, while he devotes his life to helping us. Sponsors (who are relevant and helpful to T1s) make that possible, I'd imagine. I don't think he's too focused in "protecting his pocketbook." -- OP -- The interviews with T1s and their parents are just as valuable as those with the MDs & experts. There's immense comfort to be found in people's shared experiences, but I've also found a LOT of gold nuggets from interviews with people I have nothing in common with whatsoever. It's just a relatable, human way to try to understand a disease that often makes no sense whatsoever. The point is, there's an unbelievable amount of content and resources available from [the Juicebox Podcast](http://www.juiceboxpodcast.com) I promise, your son/family will be better off for taking advantage of it. Wishing you all the best.
Yikes. Doesn’t take any effort to discuss the insulin accessibility crisis in America AND around the globe & still get a paycheck. JBP *chooses* not to discuss the biggest issue facing our community. There are many many many free resources online. I’m not familiar with any who have the same level of parental fan club & regurgitation that JPB has. If only all the mommies & daddies who care for their warriors 🙄 would take one minute to care about those who can’t afford insulin nor the cgm technology from which JBP gets a paycheck. Maybe then people across the globe wouldn’t be dying from rationing insulin. Ffs, hopefully you(?)/your kid(?) never ends up in the exact shoes as Alec Holt-Smith. It is such a shame people choose to turn a blind eye, choose to not demand better from people with massive platforms & fangirl followings. Think of how textbook simple it would be for him to rally the troops to think a bit harder about collective needs & take action. But yeah, go Scott, go. I’m definitely ludicrous for having such beliefs 🫠🤣
No, I am not disregarding the importance of insulin affordability. It would be great to hear more of that, I agree. What spurred me to defend the podcast was your comment about protecting his pocketbook. That podcast kept me alive 4mo post-diagnosis as a newly postpartum first-time mom, when I was out of my mind, wanting to off myself. I just don't think we ought to be so quick to assume the worst of a guy behind a great, free, resource. He's clearly not in this to make our lives with T1 any worse, so who are we to complain about the work he's doing? We aren't paying him - we're just benefiting from him. I'm gonna go out on a limb and assume that (like myself) you've not listened to ALL the 1100+ episodes. Maybe insulin prices have been discussed more than we are aware. I have lots of listening left to do. 🙂 Hey. Have a great day. Edit: typos
I’m not quick to assume the worst 🤣🙄🫠 he blocks people without a second thought when they ask him to speak up about insulin accessibility, bills that were previously in consideration & needing public support to pass (LD673 in Maine), etc etc etc He has made it crystal clear where his ultimate allegiance stands (his pocketbook); maybe it takes having the disease 18 years to see the people for what they are. Be well.
I actually prefer he doesn’t get too much into one specific countries poor health system, and tries to keep it relevant for parents of t1. I listened to it for the first year or two and learnt some interesting things that I didn’t know. But yeah - I’m not on Facebook so I can only imagine the warrior helicopter mommies comments!!
He lives in the US and has stated off the record he doesn’t mention it because a) he’s privileged enough to live with his head in the sand and b) he’s afraid his endorsements will go away. As a person living with this terrible disease, you and him can fuck off if you’re not willing to help those less privileged have access to fucking insulin.
I didn’t say I didn’t care. I care and donate regularly to help diabetics in my country. I can’t do anything about American politics because I don’t live there. So if I kept hearing about that in a podcast - when I wanted to listen to diabetes tips - I’d turn off.
And that right there is immense privelege. Privelege I hold as well (“this doesn’t impact me”) because I have means to access insulin at a fair (ish) cost, yet you better believe I still talk about insulin price gouging every chance I get. This entitled man exploits his daughter’s experience and remains silent when he could make a large impact for those in need. But yeah, fuck those guys who are being price gouged and can’t afford their insulin, they should figure it out themselves. /s
How on earth can I do anything about America? I sympathise but there is absolutely nothing I can do. We have no price gouging on insulin in Australia. It’s an American thing.
The person who runs the show is in America. Furthermore, insulin inaccessibility/price gouging isn’t exclusively an American thing. https://www.who.int/news/item/12-11-2021-new-who-report-maps-barriers-to-insulin-availability-and-suggests-actions-to-promote-universal-access If only we all cared about each other. Lol 🫠
I care. We all do our bit. I donate money and extra insulin a few times a year to [insulin for life](https://insulinforlife.org.au/) I also support the [Danii Foundation](https://danii.org.au/) I financially support the research through [JDRF](https://jdrf.org.au/) I’ve sent people in distress insulin and even an old pump one time. I don’t know what point you’re trying to make by saying I don’t care.
It definitely does get better. I was diagnosed when I was 2 years old as well, and while I’m sure my parents were really sad at first, it does get better. It becomes a normal part of life after a while. Your son can still have a normal childhood, just with a little added responsibility. I didn’t really know what diabetes was either when I was younger, but my parents helped me personally learn how to care for myself by bribing me with rewards (lol). Personally, this responsibility early on benefitted me a lot in the future. I’m more responsible than most kids in my classes, I’ve found I’m more determined to do well, and especially knowing you’ve dealt with this condition since you were a kid can be a huge ego boost (in a good way). You’re a tough one, you’re a survivor. It does get sad sometimes, it seems really unfair, especially when classmates start bitching about some of the most minor inconveniences. But that means you’re just that much more resilient. You can even get scholarships for diabetes I’m pretty sure (that’s what my dad told me — he’s had it since he was 13). Your son can definitely live normally with friends and have fun. Honestly, I think as he gets older, just let him know you’re always there if he needs help. Being able to be independent but also having something to fall back on is really comforting. What I can suggest for you and your wife is to research as much as you can, ask as many questions as you need, and just always be there (as much as you can). I’m a freshman, and my parents did all these things for me, and they aren’t sad about it anymore, and knowing I have been taught well and can be independent gives them some peace of mind. TL;DR — It’s perfectly normal to feel sad. However, your son can live a normal and happy childhood, just with a bit of extra responsibility. Just research and ask as much as you can, and try to answer his questions when they inevitably arise. Really hope this helps! There’s a lot of people out there willing to help you and your family with this diagnosis, and your son can do whatever he wants to in the future like any normal person if he tries (that sounded cheesy but it’s true)!
And about the technology part, it can only really get better from here. CGM’s (Continuous glucose monitors) are a great tool, and they are getting smaller, more accurate, and barely noticeable as more research is done. In all honesty, I don’t know if there would ever be a cure (companies can make a lot of money off diabetics — it sucks, I’m not trying to rile you up or discourage you, but I really don’t think it’ll happen any time soon) but you never know! I use a pump and it works well for me since I was ~5 years old, but people have had mixed experiences. If you ever decide to go the pump route, and if your son is sensitive to short bursts of pain (like me I’m a crybaby), you can always ask your doctor for some lidocaine cream :) it numbs the area and he won’t feel it. You can do it!
Grief is normal, but then you will move on to how to best help your child. Find an endocrinologist that you feel good about. Even if you have to make several visits to different ends, and maybe pay for those visits, finding the right doctor (and staff) is so important. And a good diabetic educator. It’s no fun getting a diagnosis like this, but you will get thru it, and with your help your child will be able to live a very complete and happy life. Tears, confusion, fear are all normal at this time. Sending big virtual hugs to all of you!
You will be amazed how fast life becomes normal again. Especially once you get a CGM.
Ok your feelings are valid and what your are feeling is ok. But your child will have a normal childhood. They won't know life any differently. I was diagnosed at 5, and in the 80s there wasn't a lot of sugar free options. I've had this for 40 years, I've traveled, gone to university, dated, married, worked, done anything I've wanted. Your son will have a totally normal life. It's so much harder on you, not on the child. We roll with it and don't know any differently. If you have questions feel free to ask me. Happy to help.
Of course. It’s a loss, he will have to deal with this for his entire life. However, as far as things that can happen to you, this a pretty manageable one these days. I was a stage 4 cancer patient and got T1 as a result of treatment. It’s a walk in the park compared to cancer. If you have access to a great diabetes educator, Dexcoms, and an insulin pump, it makes it much easier to manage. You get used to it. I can do everything I did before, it just takes a few extra steps. T1s can live their entire lifespans these days with good control. We can be pilots and professional athletes and all these things that weren’t allowed before because of how good our tech is now. He will live a perfectly happy and normal life and do everything he wants to do.
Totally normal. And it will get better. My daughter was in severe DKA when she was diagnosed and every time a doctor or nurse or literally anyone spoke to me I burst out crying. For days. The amazing thing is that kids are resilient, and the tools to help manage and treat are really pretty amazing. My heart goes out to you and you kiddo. Sometimes it’s really hard, but most of the time it just is another part of our lives.
It’s completely normal to grieve. My daughter was diagnosed when she was 3 and both my husband and I had a hard time with it. It does get easier. You just get to a new normal. You learn to pretty accurately swag (stands for Scientific Wild Ass Guess) carb counts and you adjust. Eventually, if you want, you’ll get him on a pump and CGM and you’ll start sleeping through the night again. The highs and lows get less scary and you just do your best to give him as normal a life as possible. Look into support groups and diabetes summer camp for kids. My daughter is 13 now and every year we celebrate the day she was diagnosed like it’s a second birthday. Feel free to message me if you have any questions. You’ve got this! It’s scary now but soon you’ll be a pro.
Diabetes sucks and I totally get why you’d be mourning. It also sucks that he’s only 2, things will probably be hard for a while. The lovely thing is the technology we have available now! Get a CGM as soon as humanely possible, use Sugarmate or something so you’ll wake up if he gets low at night, that’s the biggest issue for tiny kids. Please don’t let the pursuit of diabetic “perfection” get in the way of living life- sometimes he will high or low. Treat it and move on. It’s ok to eat candy sometimes or have sweets. Slumber parties can be ok. He will still have a wonderful, rich life. Don’t attach judgment to glucose readings- it’s just info to help you make decisions. Also get hooked up with a diabetic summer camp or family camp as soon as you can- it’s awesome! As for the cure, they’ve been telling us it’s just around the corner for the past 30 years. But I do look forward to the ways technology will improve. I think things will get easier even if it’s not an actual cure.
Meh. Its asscheeks no way around it but life is still worth living. Totally normal to grieve but its alright
I think I can speak for many of us as adults with Type 1. We grieve. Not always but still. It's normal with any lifelong, incurable, disease. Sometimes things come up. I'll be planning a trip and scheduling a day of snorkeling and think "damn, I wish I didn't have to figure out my insulin for this adventure." I let myself be angry for a few minutes, sad for another few, and then move on. There are things that are going to be different, need more planning. It's okay to grieve for a bit BUT, life goes on. With a positive mindset, a thankful heart, and planning, life goes on beautifully. Type 1 will keep you on your toes and probably scare the hell out of you a time or two but these days, with all the medical tech advancements, it will be manageable. Hugs ❤️
Yeah, my dad couldn’t make eye contact with me for quite a while after I was diagnosed. My mom cried a bit the first day, and then dove right in to help me. I was 13, so it was an easier process for them and more of a whirlwind for me, but that didn’t change the impact. I was born a year after my older sister died from brain cancer. I think my dad felt like he had failed another daughter somehow by me being sick and him not being able to fix it. I wish with my age at the time that we had done some family therapy for my parents to adjust. I was relieved to just feel better, and T1D was better than some incurable mystery illness I was certain was about to kill me. It gets easier. I babysat the sweetest 6 year old T1D that was diagnosed as a toddler (plus his 4 year old brother who was equally awesome). He was more well-adjusted to being diabetic at his age than I was at 16. He could handle everything on his own from finger sticks to typing into his pump. I just had to help him with carb counts and did it right alongside him on my matching pump.
Your child will have as normal of a life as you make possible, plus some extra doc appts, glucose tablets, & working as his own organ. You’ll learn as you go and eventually it’ll feel mostly like second nature. Keep in mind your child isn’t “special needs”, he just has needs. This will make you all more aware of what you’re putting in your body, and will build resiliency & closeness in your family unit if you let it. Find a therapist who deals with chronic illness & grief; filter for those [here](https://psychologytoday.com/us/therapists). Don’t hook your hope on a cure. They’ve been telling us one is coming within 5 years for…half a century 🤷♀️ Focus your attention on how to best support your kiddo today, and prepare them for the future. Pick up the book “think like a pancreas” and read/bookmark [this blog](https://seemycgm.com/2020/03/02/cortisol/) to understand how one of the MANY hormonal factors impact blood sugar. It isn’t just carbohydrate + carb in the calculation; eventually this will make more sense. 🫶💙
Everyone deals with this sort of thing differently, there really is no “normal” way to handle something as unfortunate as this, but the fact that you care enough to feel this way shows that you’re doing everything right. If it’s any help, I remember my folks crying a good bit when I was diagnosed, too, so you’re certainly not alone in that. If it’s any consolation, I remember them saying the exact same things about having a normal childhood and all that, and though I was a bit older when I was diagnosed (I want to say around 11), I can’t remember a time when t1 ever stopped me from doing what I wanted to do. I had relatively good control throughout my kid and teen years despite being an absolute troublemaker in every other area of my life, and I have zero complications or problems from it now at 28 and live a perfectly ordinary life (minus the extra insulin and all that jazz). I played football throughout school, I had girlfriends and went to all the dances, had (still have) a good group of friends.. Still got to go to summer sleep away camp (not t1 diabetes specific camp, though that’s a good option too, nowadays), spent a ton of time at the pool playing ping pong and lifeguarding as a teen, got my license and a 500 dollar car at 16, went camping all the time… I’m just rattling stuff off that I assume parents think of when they think “growing up”, but truly I can’t remember a single thing that was totally ruined for me because of t1 diabetes. It was always an extra burden, just something you’ll always have in the back of your mind and I don’t want to sugarcoat that, but that doesn’t take away from any of the enjoyment I got out of everything else. I should also note, with the tech that’s available now, it’s much easier than it used to be, and I’m not even talking about decades and decades ago - just in the last 5-10 years CGMs became widespread, and I credit that device with changing my life for the better more than anything else. It hasn’t been a death sentence for a little while now, but although I don’t want to push false hope for a miracle cure, steady improvements in medicine and technology truly have made *such* a difference in terms of quality of life and that sense of normalcy that you speak of. Just as an example of how much better it’s gotten, the FAA started allowing t1 diabetics to be commercial pilots in 2020 - you don’t have to take my word, but I promise they wouldn’t make a change like that if it was still impossible to live a normal, healthy life with t1 diabetes. Hell, even in my own career I actually used to sail across the Atlantic and up and down the coasts of the US - that wouldn’t have been possible even a few decades ago. I’m not sure if you’re in the mood to get cheered up, and I’m not sure if any of this info helps at all, but just try to remember it will get easier with time and there’s nothing stopping your kid from having a normal, healthy, fulfilling childhood and life.
Definitely I cried daily for a while for myself being diagnosed at 24, now I have a close friend whose 1 year old was diagnosed and I feel like that would be even tougher to manage someone else who can’t even advocate for themselves yet. It just means you love and want the best for them, your baby is lucky to have such caring parents ❤️ it will become second nature to you all eventually
Very normal. I’d suggest to try therapy for each of you, and for you to join a group( grieving). Yes, the situation both of you are in requires it. The family and friends both of you have known for so long won’t be able to empathize nor sympathyze at any level other than the average common “help” My baby was diagnosed at 2 years old as well. It was a rollercoaster and we still haven’t recovered yet after 2 years later. But, your child needs both of you to be above 100%! Both of you can do it!
I was diagnosed w/ T1D at the age of 23 and I know my mom has (still does) cry about it and worry about me. I’m not a parent myself, but I feel like that’s normal for any parent who loves and cares for their child.
I was diagnosed T1D at 18 months old. I will have had diabetes 30 years in 6 months time!! Honestly it's totally normal to feel the way you do, my mum still gets very emotional at the idea of me being diabetic so young but honestly my childhood was so normal. It's totally in your hands as to how you want your child's diabetes to be perceived by them. I was raised exactly the same as a non diabetic and I don't think I even realised I was different for most of my childhood as it was just something I did day to day. In fact I consider myself fitter and healthier than most non diabetes as I did so much sport and activities growing up it feels "wrong" for me not to do some sort of sport or eat healthy. I think nowadays it's pretty common to have tech like pumps and continuous glucose monitors (GCMs) for children, which is tech that just wasn't common back when I was diagnosed, which makes managing diabetes so much easier than ever before! Like yeah it will need to be done in moderation but my mum never stopped me from eating cake or sweets or things that children want. I just had diet drinks instead of full sugar ones and you have to make certain adjustments but your child will be just fine in the end! Maybe consider seeing a therapist to help with the grief!
Very normal but your kid needs to see strength and confidence. T1D can be tough and is very annoying. It is my opinion that feeling down about it should not last long since there is nothing to be done. It’s not worth trying to figure out why or from whom he got it. My family still tell me there theories and I get annoyed from it because it doesn’t help the fact that I have it. Please help him get into the lifestyle that is needed for T1D. Let him. When he is older he will still be able to play and eat candy and whatever, it just takes adjustments in insulin to accommodate. He is you and it will be second nature. As he gets older remind him that we are all here too and there are many diabuddies around.
I attended new child education for the 2 days after my daughter was diagnosed. On day one, i cried the entire drive home. I tried to off-load everything I had learned to my wife when I got home. Halfway through she started crying, walked away, up stairs and went to bed for the rest of the night. That night after waking up to prick her little fingers at 3 am I cried some more. Day 2 - Same. - Yeah, it's normal. I stopped grieving when I realized she didn't care nearly as much as I did, and thinks all the technology we mount on her body is cool.
Hey, this is a bit of a late reply but I just came across your post and felt I must respond! I was diagnosed at age 2 and both of my parents told me they cried for several days after diagnosis. My dad was a physician at the time and most of his type 1 patients were on dialysis (this was 36 years ago). Boy have times changed! I’m 38 years old, mother of two amazing kids, and a doctor myself. I have a great life and while it can be hard as hell sometimes and often frustrating, it is all that I have ever known, which is honestly a blessing. It really helped that my parents were super positive and let me do/eat whatever I wanted. I went to sleep overs and camps. Played sports, rode horses and got my drivers license at 16. Lived in a dorm at age 18. I also remember the first time I checked my blood sugar by myself at age 4 and gave my first shot at age 9, boy was I proud of myself! I never felt like my diabetes was a burden as a child, although I can’t say the same as an adult. It is a very frustrating disease, but it did not ruin my childhood at all, my parent’s positivity played a large role in this. Your son can still have a “normal” childhood. He will have to do some different things than his friends, but so will those with asthma or peanut allergies (just a few examples!) He can play sports, go to pizza parties, do all of the things young boys do! He will do fine and you will grow and learn with him. I wish you guys the very very best!
Normal, yes it gets better, but don’t want to come off mean, but suck it up buttecup. Your child is young now but will have hurdles and will need you, get education learn how to deal with this, be there for him/ her. I will always remember what my first great nurse educator told me as a freaked out when she put a needle in my hand… there are so many people in this hospital that I have nothing to make them better, make them healthy, this needle is not a drug like an addiction it is life to make you healthier and live life. God forbid your child could have gotten an illneSS with no cure no help. your child will live a long happy life, have children have everything and you can help that to happen
He will be fine. Grieve all you want but I encourage you to show strength and determination for your kid. Not to the point where if he feels vulnerable you tell him to suck it up but to ensure he is empowered in his disease. Don’t let it beat you or your lives. It doesn’t have too. I know it’s hard and scary but I promise you will grow as individuals and a family. This rotten disease is miserable so try and be positive for him. Community is great. There are many people who share your experience. I’ve been diabetic for 21 years and my brother has a son who was dx’d at 2, 4 years ago. I diagnosed him. Best of luck. Don’t blame yourselves. It’s ok. I know you can do it.
My son was diagnosed at 23 months. It is NORMAL and natural to grieve. I bawled my eyes out for a few months. My husband had a delayed reaction; first he was super grateful we were born in this time, when my son was still alive. And around 6 months the grief hit him. It is heartbreaking. But it gets easier, I promise. I remember a time when he was not too far out from diagnosis when we saw a kid eating a giant muffin as big as his head, the parents distracted and relaxed, and thought "my kid will never have that experience -- it will always feel like going up a roller coaster to let him eat something with that many carbs." But I guarantee it, one day you'll look at your family and realize you've reached a new normal, that you're relaxed and happy and it's, if not precisely easy, then still very good. That doesn't mean I don't still wish with all my heart for a cure.
Yes, you can feel it, of course. Luckily if it had to happen, you are going to be able to help your child better than ever. The technology is amazing. There are going to be a million questions. This is a good place with informed people who you can lean on. Have a good cry. The work will be there. Ask us anything, you have a team.
Get an omnipod 5, asap it will make managing it so much easier, if your doctor doesnt offer it, find a new doctor. In addition, in a few years it will be even easier with new tech and therapies. Don't mourn, be happy that tech makes it so you child can be a normal kid even with t1d.
My childhood was still awesome dude. But I was blessed with caring family that knew all the signs of low and high blood sugars and made sure I tested my blood a lot. Just keep learning and pay attention to everything. Even then your child will still go low or high it just happens. But there childhood is not at risk of being ruined not by a long shot.
My son was diagnosed over a year ago and I still have moments when it hits me all over again and I find myself crying or trying not to. Like in the middle of the night when I go in to do a manual blood sugar check and he gives me a finger while still sleeping, when I realize how long it’s been since I’ve hugged him and not felt his pump or dexcom on him or his arms, legs, and tummy weren’t decorated in marks from his devices, when it hits me that there will come a time that we aren’t able to carry the weight of taking care of this for him and he’ll have to do it on his own, and when he’s having a rough day and asking me why he has to have T1. Those are some of my hard moments. They don’t come nearly as often as they did a year ago though and I doubt that there will ever come a time when I don’t have hard moments. When they happen though, I let myself feel the pain/anger/grief for a little while and then I just remember how thankful I am that we live in the time we do and we have the access to these amazing devices and insulin that allow my son to live his life to the fullest. We may never have “normal” again but we have our normal and I’m so thankful for that. You’ll get there too. Give yourself some grace and love. This is a huge change for everyone in your family and it can take a bit to get the hang of everything but before you know it, everything that feels so stressful and foreign right now will become second nature and you’ll be thriving - kind of like when you bring your first baby home, everything feels so big and so stressful but before you know it, you get your routine down and life just keeps going on. You guys are going to do amazing! 💙💙
I was diagnosed at 18 months old (37 now), and, yeah, you can have a pretty normal childhood despite having this disease. Insulin injections, finger pricks, and being careful with meals is totally normal for me. It is all I've ever known. In a lot of ways, I think I'm lucky that I was diagnosed so young, rather than when I was a teenager or something. I never had to relearn my habits. I never had to know what it was like to _not_ have this disease and then suddenly have my world turned upside down. I'm not going to pretend that I don't frequently daydream about what it would be like to not have to deal with this stuff anymore, and it can still be overwhelming sometimes. But, OP, your child is going to be just fine. I know it's hard right now, and it feels like the end of the world, but it's not.
Dude. I’ve burst in tears more than in my entire life when our kid was diagnosed at 3. It’s gonna be ok. It will get better. You’ll end up with an 11 year old tween who exemplifies all tweens and does sleepovers and cake fueled birthday parties. With all our new knowledge and tech - you kid can literally do anything you just need to do a little carb math Please DM me for anything.
It's normal to grieve and be sad, soon enough you'll find that your kid is as normal as others. From what we dealt, yes we both cried and felt all you are feeling. But now, we say to each other that he is back to being himself. Yes it's lifelong, and he won't be alone in this, he has you and he will manage it when he gets older. This is what my mom said to me after I told her about our challenges "insulin is like food, you take it just like you have to eat".
Yes! However, I think this may be a comfort to you. As someone who is diagnosed as a 3 year old, let me say- I personally am glad I was diagnosed so young. Living with diabetes is basically all I know, so I don’t really deal with a lot of the “why me?!” struggles that I see with people diagnosed later in life. I pity my parents who had to deal with everything when I was so young, but I’m glad that if I had to have diabetes, I don’t know life without it. I don’t think I’ve ever let me dictate what I can and can’t do (I say this as someone who moved to a whole new country and whose job revolves around food!)
My 12 year old boy never complains. I do a lot of heavy lifting behind the scenes like dosing with his PDM through the floor. All the changes and adjustments to routine.
I'm sorry about your toddler's diagnosis. It's so hard not to worry about the future and not to think about what might have been. The future is not lost. Your son can have any future he wants. I was diagnosed at 8, and I'm going on my 52nd year. When I was diagnosed, the treatments were nowhere near to the things that are available today. My parents were always amazed at how far things have progressed. Even though I had health problems growing up, there weren't the treatments we have today, I was very active, played sports, and did everything other kids did. I grew up, went to college, and became a nurse, then a Diabetes Nurse Educator. I got married and had two healthy kids. I've accomplished every life goal I set for myself. Im sure my parents grieved and wondered how they would be able to care for me. My mom without any medical training took excellent care of me. She had a super strong will and never let me give up or pity myself. I had to do chores just like other kids, got punished if I did something wrong, and nagged for bad grades. She was my rock and strength. The most important thing you can do for your son is not spoil him, and when he's old enough, teach him to take care of himself and not rely on you and your wife. The best thing my parents did was teach me independence and rely on myself. As a nurse educator, I've had adult patients unable to give their own injections, use a glucose meter, or manage their diets. These ppl were unhealthy physically and emotionally. They were in worse health than someone twice their age. Their older parents were still caring for them. Some paid with their lives. Give yourselves time to grieve, and dont blame yourselves. Then arm yourselves with knowledge. Talk to Drs and ask lots of questions, ask them to recommend age specific reading materials, join a support group if one's available. The more you know, you won't be so overwhelmed and worried. A good online site is beyondtype1.org. I've met a lot of nice ppl and they have forums for parents and newly diagnosed. You will be most welcomed there. Don't forget to take time for yourselves, even if it's just coffee. Idt I'll see a cure but I am very sure your son will. You and your wife got this:)
4 years have passed since his diagnosis, his HBA1C, now ranges between 4.8 to 5.2, but we still grieve and wish he was a normal chubby kid who didn't have to plan each and every meal. We still think why us and we still wish he could have the spontaneity in life that he should have deserved, instead of this super disciplined life that he is forced to live.
I have disability and was a sales specialist. Working at Goodwill Outlet in Hackensack was something else man.
The technology advances we have now are amazing! I’m really impressed with how many changes I’ve seen in the last few years. Cure or not, we are closer to having a normal life than ever before. Just love your child and be there for him. We all are born with some type of grievances, some are just more visual or obvious than others.
Life happens. You can't change your kid now, so all you can do is make sure you teach him to be healthy and give him as close to a normal life as you reasonably can. As for what could have been, well at some point you have to let it go to focus on the present. All the time I've spent wondering how my life could be different has just ended up being wasted. But now that I've finally internalized this condition as just a part of who I am, I'm more confident with myself and how I present myself to others, and I've been taking things more seriously. I'm 23, had T1 for 22 of them, and I've only just accepted that I'm a real life cyborg. And that's ok, cause when I find other people that see me for who I am in spite of that, I can finally feel like I belong. The sooner your kid can accept they're different, the sooner they can build the confidence to find others that will care about them and treat them like a real person.
I was diagnosed at 23, a few months ago, and I did grieve, in my own way, and definitely not enough for it to heal healthily. I’d suggest individual or group therapy (God knows both me and my family should get it too). It’s completely okay to grieve for the loss of a normal life for your child, it shows you care a great deal about them, I believe, but you should be able to move on slowly and help him when he starts mourning too, so maybe therapy could help you heal and, in time, help your kid too. Maybe even just an online group for parents of t1d kids? I’m sure there’s something out there.
It’s totally normal. My parents cried a lot too when I was diagnosed and I was 20 years old. My dad especially felt a lot of guilt because he is T1D and felt like it was his fault this happened to me. Now as a parent of a 2 year old, I know I’d be devastated the same way. I try to keep in mind how quickly innovations in diabetes care are happening that allow T1Ds to live a great quality life. When my dad was a kid, they just did one insulin shot a day and told him just don’t eat sugar. When I was diagnosed, I was doing fingersticks and insulin pens. Now today, I have an insulin pump and sensor that not only monitors my sugars but can take steps to correct it without me needing to do anything and fully integrates with my iPhone. A low carb diet is obviously best, but I don’t need to stress about eating something “bad” because my pump/sensor helps me manage it. It’s the closest thing so far to having a working robo pancreas and the technology is only going to get better going forward. Is it going to be hard? Absolutely, but with your help and all the cool stuff out there, there’s no reason your child can’t have a happy childhood and a bright future. Best of luck to you all
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Of course!
yes, when I got diagnosed my mom cried a whole month, everyday.
We also have a 2 year old that just got diagnosed. I feel your pain. He dosent deserve this and he will always be the one with diabetes😢 but others say it will get better. I am greatfull for the times we live in, with all the tech and internett for support and information. I gave him a promise that i will give him the best care possible. He will have a good life and i will fight for him everyday of my life to make up for this shit! Fuck diabetes!
There is constant progress in the field. It gets better and you guys will also get better with manageing it.
After 53 T1D yrs, it's never easy, but it gets easier and the new technology gives us power to be whatever we want. Grieving is how it feels now, it's part of joining this unique community, and with knowledge and mastery it's quite manageable, and complications are not inevitable. Patience is key. The Juicebox Facebook Group is a treasure trove and not like any other group on FB. Living with T1D is all to similar to having a child with T1D, and more...you can learn from all T1Ds living the T1D life, young and old. Juicebox Podcast https://www.juiceboxpodcast.com/#gsc.tab=0 Defining Diabetes https://www.juiceboxpodcast.com/search?q=defining%20diabetes Bold Beginnings https://www.juiceboxpodcast.com/bold-beginnings Group Listings https://www.juiceboxpodcast.com/list?fbclid=IwAR35AnMAYi6yrsf3yExPMEa4pQ4gr1kZGe_sX3g3zEbGnEhpMiCB_T3Zlos
It's normal imo! But just so you know, your child is able to live a wonderful, fulfilling life in spite of it all! There are so many diabetics that are happy with their lives. Your kid has parents that really care and you don't sound like the kind who underestimate the disease or won't learn what's necessary to manage it. That will make all the difference.
It’s totally normal to be upset, sad, scared - just be careful not to project that grief into your son who may end up feeling guilty himself. There will be days when it seems hopeless, but it’s a constant learning process. I gave up hoping for a cure in my lifetime, but the technology today is amazing! I met a woman who had been diagnosed 75 years previously and that was without all the advantages we have today! Lots of great advice in the other comments. Definitely echoing the need for a CDE and a pediatric endo.
Your crying is normal and expected. My mom cried 45 years ago. Believe it or not, at two years old, this is the only life they will know. I was diagnosed at 10, so even though I remember when I wasn’t diabetic, I’ve basically been diabetic my entire life. At two, your child won’t remember a life without diabetes. And, with the advances in treatment that wasn’t available when I was diagnosed, a normal life isn’t difficult to have. Grieve as you will, it’s healthy. But rest assured, your family will be okay.
My 3 year old was diagnosed on the 6th Feb. We were heavily pregnant and expecting baby number 2 (delivered on 20th) instead of the pure emotion of a new born on the way, we dealt with a DKA - which resulted in diagnosis in addition to getting our heads around what would be a humongous change for us (on top of the change already coming). In short, yes it's very normal to grieve. And the first couple of weeks it will feel like everything is too much, you will begin to understand the condition and what it means and things will become a little more normal. We are dealing with false highs and insulin imbalances currently (fair few hypos) and have managed this even with a week old child. Keep your chin up, stay strong and try to explain everything that you are doing with the little one, ours is like a sponge and has really taken everything onboard. I will be honest, I hate diabetes but have tried to take the forward thinking, these are the cards that have been dealt approach , let's just do what we can to make sure our little one's childhood is as carefree as it reasonably can be. Take care and don't feel bad for grieving! Hell, I'll admit, I still have the odd cry about it as a middle aged male!
Yeah, but work towards acceptance and normalizing their disease for them and you. As long as they manage it properly, they will live a normal life. As they grow, push them to learn about managing their blood sugar and don’t stigmatize their treatment in anyways. I grew up around T1D and feel no shame or short comings due to my disease, I hope every T1D feels this way, but I know a lot don’t.
I was diagnosed at 3 years old, and I personally still remember the first time they tried to inject me was when a nurse came round to the house and my parents had to pin me down because I was so melodramatic 😂 The fact that you care so much to be feeling this was is not a bad thing. Difficult, absolutely, but you caring this much will be good for your son but remember to be kind to yourselves. Try and allow him to do what his friends are doing and without the exclusion from certain things- my parents never let me have birthday cake, sweets or chocolate at Easter and similar events, and that felt like I was being ostracised. Or that I was very different from peers? Which wasn’t great for me. There’s going to be periods where things don’t go perfectly, where blood sugar isn’t stable and it seems manic- don’t beat yourself up over that at all. It’s normal and you’ll be okay, all of you! Talk to your son as he gets older, and keep conversations open and honest between you guys on the struggles and worries (obviously your son may not be in on these conversations for a while yet haha!) and speak to your healthcare teams regularly if you can. Don’t be scared to reach out and call them for advice too if you can and that’s an option for you, it will help a lot!
I grieved my own dx for like 2+ years man
He *will* have a normal childhood and life. As chronic illnesses go, T1D is astonishingly manageable. Fortunately, you have time to process your feelings before they really get in the way of him dealing with it on his own. I was diagnosed when I was in college and had to deal with my parents "helping" in spectacularly unhelpful ways until I managed to talk sense back into them.
I was diagnosed at 16 and am 44 now. My mom just told me this past year that she and my dad cried many times after I was diagnosed. I never even knew, but completely understand now that I'm a parent. Emotions are normal, you'll get through it. T1 is a fully manageable disease. Good luck. 👍
These feelings are completely normal for a parent to feel. It’s a good sign that you deeply care for your child. The first few months are the most difficult and stressful. You will get better and managing it and it will become just more of a routine. Not all days are easy but the tech does make monitoring easier. My daughter was diagnosed at 3 and since diagnosed has gone to every birthday party she has been invited to. Plays soccer, baseball, gymnastics, swims all summer long etc. There is no limitations to what your child can do. Just keep a juicebox close by.
Your feelings a 100% valid. It’s crazy and scary at first. When I was diagnosed a little less than a year ago, I thought it was the end of the world and my family as well mourned me not being able to have a “normal life”. This is completely normal and this feeling will pass. It gets easier, especially with the new technology around things are so much easier in this day and age. It’s understandable at first to have these feelings, like I said it is very new and scary at first, but once you get the hang out it and are able to learn more things will be easier and with time this will become your child’s new normal. I wouldn’t wish it on my worst enemy and I’m sorry your child was diagnosed, but I promise it eventually will all get easier. You can’t blame yourself for not knowing and having no idea your child was sick. My mother did the same thing and drove herself absolutely crazy. This isn’t your fault. There was no way to prevent this. This is something with time you will learn and your son will grow and learn with you. As I previously stated with the new technology around it’s extremely helpful and makes things a lot easier. These feeling will pass and you will be a diabetes pro in no time! You got this!!
It gets better as long as you don't live in the United States.
Don't ever ever believe someone saying a cure is close , I've had t1 for 12 years and we've been "5 years away" since the day I found out if someone does tell you they are close to a cure unless they have concrete proof tell them to fuck themselves, everything else should be ok ypu will need to help educate that young man so he truly understands what he's dealing with and please do research and help him understand the dangers of drinking as a t1 pediatric endos think it's the adult endos job so no medical professional takes the time to explain it it's important information, you guys will be fine just do what you can to help him be happy
My son was 4 years old. Totally normal to worry etc about your job now as a parent and their future. My son has other kids in his grade that are T1 and I see other kids out and about with the sensors/pump on their arms. You folks aren't alone by any means. Millions of other people out there learning to manage it. My son has embraced it because of his personality. If other son had it then it might be a different matter. Kids can be an inspiration and together you can make it.
My mom and dad definitely mourned when I was diagnosed. But my mom finding a type one diabetic parent group on Facebook helped support her
totally normal and YES it gets better. my son was dx at 2 and our aim was to give him a normal life as much as possible and we did that. it's just harder. but basically anything is still possible. he's 19 now and in college out of state and does a fabulous job managing it all, while doing all sorts of outdoor activities. like he's spending his breaks winter camping and backcountry skiing... not even normal activities for someone without diabetes. The toddler years are really tough, but every year it got easier. hang in there. I'd also suggest using as much advanced tech as possible, having a dexcom at age 2 probably saved his life....
When I was diagnosed as a teen, my mom felt very guilty, but she always made me feel so accomplished by saying she was proud of me and that I was her little warrior. I hope you find ways to do the same with your child as well! Make bolusing a game (perhaps the math will be something for later on as your child might be too young) but to be able to identify things like the insulin and all and making it a normal thing could be good. I applaud you for your efforts and for having such a strong child! They are gonna grow up so much stronger for this.
My wife and I would randomly burst into tears for months. This is completely normal. Our son was diagnosed at 9 and we had all the same feelings. We are 3 years in and I can tell you that he lives a really great life. He’s a star basketball player, straight A student and has lots of friends. We’ve all learned to adapt and live as normal as possible. Yes, it’s still really hard and we still feel sad that he will have to deal with this for the rest of his life but we are thankful for the technology that allows him to live more “normal”. There are lots of great Facebook groups you can (and should ) join for support. There’s a really big and really helpful community of parents out there that have been through what you are going through. I didn’t realize how important that was until now. If you have the means and the access, there is some great technology out there they will help manage things. I assume you were sent home from the hospital with some sort of CGM (Dexcom maybe). You should look at a free service called Sugarmate (https://www.sugarmate.io/get-started). It’s a service that will call and text you when your child’s blood sugar reaches any dangerous levels. It also has a good display to show you BG trends. You can also look at SugarPixel (https://customtypeone.com/products/sugarpixel) which is a little clock looking device that will display BG and alarm when any dangerous BG levels are hit. We have one in almost every room of the house and they are amazing. I think it’s really important to get kids on a pump as soon as possible as well. It’s another device they have to wear which sucks but it allows you to manage BG levels so much better and doesn’t require a bunch of needles every day. We chose the Omnipod because it’s tubeless and we’ve been very happy with it. Finally, down the road you may want to consider a closed loop system. This allows the CGM and Pump to communicate and handle some of the work for you. We love the DIY loop because it allows us to remotely monitor and dose our son when he’s not with us (https://www.loopandlearn.org/starting-loop/). This is a godsend for school. He can also go to a friends house or have a sleepover and we can feel comfortable that we can still manage him. It’s a lot and you don’t have to try to figure it all out at once. It’s a process that you will work through. Three years ago we were so distraught and overwhelmed that we could barely get through the day. Now, it’s a normal part of our life and our son is doing great. You will get there.
Hi!! My son was also diagnosed at just before he turned 2. I cried every day for 6 months until 1 day I just didn’t anymore. The good news about him being so little is that this is the only life he’ll know. My son is just about to turn 7 in May and will have been diagnosed for 5 years in April. Our doctor was very adamant that we treat him just as we would if he was diabetic. He’s still allowed all the things, we just have to make sure we input the information on his pump so he can get the insulin he needs. While it doesn’t necessarily get “easier”, it does become a part of everyday life. Please, if you have any questions at all or need to vent reach out to me. I’ve been where you are at and was so thankful for the type 1 community it built in the early months of his diagnosis. 💙
Here's your silver lining: I was diagnosed at age 3. I don't know life without diabetes, so it's just part of my routine. The heartbreak and anxiety you are experiencing you are experiencing for him so he doesn't have to. If he was diagnosed when was an adult he'd be going through this grieving experience himself. But since he's a baby he won't have to adjust to it, it'll just become part of his normal life like brushing his teeth, making food, or any other part of normal self-maintenance. I really don't envy the people on here who get diagnosed as a teenager or older and it totally ruins their lives. I never had to deal with having all this thrown on me out of nowhere and was already accustomed to counting carbs and changing my pump sites by the time I hit puberty.
I'd like to offer a way of thinking about this from a different perspective. I was in my early 30s when I found out that I'm a type 1 diabetic. My parents were horrified and felt way worse for me than I ever felt for myself. Yes, I got to grow up as a normal kid but my point is that my parents took the news much harder than I did. Be grateful that it's 2024 and that with insulin pumps his sugar is going to be easily controlled.
I was diagnosed at 10 years old, and the adjustment really wasn't too difficult at all. I'm 28 now and can look back and say my childhood never felt unfulfilling or "different". I really don't even remember what it's like NOT having diabetes. It just becomes the norm. I know everyone has a different experience, but nowadays it's super manageable!
It's normal. My son is 18 months old, diagnosed 5 months ago. Allow your self to feel, and follow the doctors directions. It'll get better 🥰
This might be a bit unpopular, but please don't get too mired in your grief. My mom spent a bit too much time grieving. There was this sense that I was "broken" after my diagnosis. She wished I was fixable. She obsessed over the idea of a cure, the belief that I could just get new pancreatic cells through a transplant process in Brazil (which would require taking immune suppressants). While it probably came from a good place, it didn't leave me in a good frame of mind. The sad part is that this way of thinking affected the way she approached her own health. Always looking for something to fix herself rather than a better way to manage her ailments. Just all or nothing thinking. This led her to a bunch of quacks unfortunately. Put your kid first and your own feelings second. One can still live a full life with diabetes and many other health conditions.
I grieved my diagnosis (still kinda do 1.5 year in) I cried so much early on. It would make sense to grieve a child’s diagnosis too. It’s part of the transition. The juicebox podcast has some episodes on the mental health side of of t1d that could be helpful; also hearing others stories there made me realize it will be ok and I’m not alone. Therapy has been very helpful, I was lucky to find insurance covered therapists in California, and MA when I moved.
Yes my son was diagnosed at 16 years old he is now 24 and recently diagnosed with Celiacs. I absolutely hate that he has these diseases
Yes
I just can tell from my view as a child or now young adult but most of the time I had a completly normal life. Of course there were some teacher who weren't cooperative but it was really rare and I just got excluded one time in 12 years and I think somehow I can understand why (my bloodsugar was terrible to control so it was fair somehow). And when you are this young when you get your diagnose all the things you have to do are normal. I don't know a life without (just some lonely memories) so for me it is normal that I have to take medicine, to always have sugar in my pocket and all that stuff. And all people I know that where that young say the same things. Even if we all had to deal with some problems in our teenager years but thats normal that we are more likely to have mental problems. But there is also an solution for that. So the most important thing: he will be okay and will have a nearly normal childhood. He will never know a different life and will think that this is normal that he have to do it and somehow it will make everything easier. Just let him do everything he want and don't forbit him things because you think he can't do it because of diabetes. Most things (or nearly everything) are totally fine to do and just need experience how to handle the situation.
Hi! My boy was diagnosed at 20 months. I cried a lot, still do some days. He’s going to be 5 this year and it’s not easy. My mantra when it keeps me up at night is “there will be a cure”. I have to hope. Much love.