You know it is so unfair.
I try to remind myself (very often) that in as much as I try to write about what it is like having diabetes in our home, I still do not know what it is like to have it inside me. It breaks my heart when I read that one of our friends in this community is going through something that challenges them either by complications, or just being tired of having diabetes 24/7/365 that takes a toll on them.
They have it so unfair.
Since I write from a perspective as a dad, these instances serve to remind me of a really BIG thing once again; I do not have diabetes.
We may have sleepless nights, we may be exhausted, we may be frustrated, we may hate what life has delivered, but remember this always; it pales in comparison to waking up every morning knowing that you have diabetes; and that you must deal with diabetes.
I get it. I’m a parent. Our kids with diabetes do not know what it is like to be a parent unless fate really plays a cruel trick on them and they have a child also with diabetes. For much of ‘diabetes’ –been there done that. Doing it for over 20 years and now with two kids. But recently I was reading about someone I highly respect and the news of a complication recently added to the list of things already being dealt with on a daily basis.
I stared at the screen after I was done reading. Tears rolled down my cheeks.
I cannot fool myself; I have no idea what it is like to actually be the one living with diabetes.
Now I may think I know a lot. But truth is, I don’t; because I don’t have it.
I do not know what that fear is to be told “Now you have this; or that new complication.”
I do not know what it means to try to push fear down to a place so I can live every day while managing something I could never have wished upon myself.
I may have a fear that I may walk into a bedroom one day and not find one of my children breathing (there I said it) but that MUST PALE GREATLY to brushing my teeth at night, looking into the mirror, and wondering if I would wake up the next day.
Most people with Type 1 will tell you that they deal with it and they cannot allow themselves to live life in such a manner……BUT IT MUST play on their minds from time to time. It must.
So when I say that our kids are heroes with what they go through every day…….I mean it; but know this: I really have no clue what it is like.
And it is THIS reason why I will fight as long as I have a breath in me to get us to a cure and just as important; to help my kids have the best and most up-to-date tools and information available. It is the least I can do……..they have enough to worry about.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.
24 replies on “Diabetes….as a Parent; Really……..I Have No Clue. I Cannot Fool Myself.”
I completely identify with the sadness echoing from your post. Sometimes days will pass and I wake up to from the number jungle to the realization that diabetes is in my daughter’s body, not on the glucose meter. It pains me to think she has something so huge and I don’t.
Thank you for sharing your thoughts as well. …..and it is SO HUGE, isn’t it?
I just want to let you know from my point of view, that parents of diabetics have the more difficult role most of the time. Although neither of my sons are type 1, I am. I’m sure most parents of type 1’s would switch positions in a heartbeat. Although I have to go to bed at night wondering if my numbers are good enough to get me through, you must somehow fall asleep debating whether our not your decisions will cost your innocent children their health, or worse. Parents of type 1 children deserve a holiday.
I was about to comment on thi suntil I read that you have T1—certainly gave me reason to pause and read more crefully. Yes we would switch, I would say we have it harder in different areas than those who live with it daily. A holiday? I have said it a thousand times—-I get a break when they get a break….not one second before. Thanks for chiming in.
Jim, thanks for your perspective. I don’t agree that just because I would trade places with my son makes it worse. I would trade places with any of my boys even if ( maybe especially if) it was a situation without hope or even terminal. I would say that neither is MORE difficult, both are undesirable and have their own difficulties. I would say recognizing and respecting those differences is key to ending this thing. I know that I will never feel the fear of a sudden low or knowing that organ,vision or limb loss could be in my future but knowing that my son does is what drives me to do all I can to support the groups that have the best chance ending that. The same as those fears drive Type 1’s drive them to end it.
Thanks for adding your perspective Ken.
While neither of my children have T1, passing it on is something that is in the back of my mind much more often than the thought of dying myself. I’m constantly looking for signs & symptoms.
When my youngest (youngest, he’s now 20… when the heck did that happen?) was little, he loved water. Water over anything.. juice, soda. That was all he wanted. And he always ate like a horse on top of that. It was worrisome for a long time but that’s just how he is.
Now that my kids are grown my mind turns to their children…
Great article. I remind myself of this almost daily. My son is my hero. He has the courage and strength to deal with D in a way I cannot imagine.
Thank you Cindy. Courage and strength ar egreat words to describe our kids.
I enjoyed reading your post, you hit home for many I am sure. I am a diabetic mom with a diabetic daughter. I do know what it feels like to have it in me but still am so worried because although I can control what I do, I cannot control her. She is beautiful inside and out and I would not change the idea of her being here if I had known she would end up with diabetes. I can handle this and she can as well, I remain positive that I WILL wake up in the morning, in fact that has never entered my mind about myself but I check on my daughter constantly. Diabetes is not the end, nor the beginning, it is what it is and we can make the choice to survive as we all can with issues that face us. I have lived well for my 29 years with this disease and I plan on living another 29 with it. I will support my daughter in her wellness and strive to make our lives the best that we can. It is tough, no doubt.
I have found the responses from parents of a T1 child, who also have T1, to shed an enormously unknown light into our lives. Your words were read carefully and as I read in amazement what you had to share, I was humbled to my knees. I truly thank you for your incredibly thoughtful words.
My aunt was T1 – I remember the constant worry she went through – it was mostly for me (and maybe other my cousins as well). Every time I went to visit she checked my blood glucose. Yes, she taught me what to do in case she “passed” out, she constantly traveled with chocolate bars, etc. She took pains and her husband spent a great deal to accommodate her disease (such as putting in a special floor in their in-ground pool). She was very aware of her limitations and the dangers she faced. And yes – she hated the disease. There was nothing more she wanted than to have her own children. T1 obviously ruled her life – but she never expressed worries for herself. In fact, she would say that Diabetes probably wouldn’t be her downfall. And just as she had predicted it wasn’t – she died in an auto accident in her mid 30s.
Meanwhile… Years later – My 4 year old was diagnosed with T1 (last Sept. 2012). I was devastated! I’m a licensed practical nurse, and so many of my patients are diabetic. I know what the future holds, especially if her BS is not well managed. I watched my meager savings go away in a poof (not slowly dwindle) with her first pharmaceutical bill. Her daycare dropped her the same day they found out about her dx (they weren’t prepared to accommodate her). I’ve been struggling since then. I don’t think parents should feel bad or guilty for admitting how hard it is on THEM. It’s extremely difficult and there very real fears and concerns that plague us. I think that any parent with a child diagnosed with any life-threatening condition has to right to vent, ask for help, etc. It doesn’t mean that they don’t understand that the one with the disease is not them – it doesn’t detract from the life that our kids deal with and their perspectives and fears. It’s natural and healthy to admit to someone that your life is hard. It doesn’t make you selfish or self-absorbed. Stress is a killer. And if you are stressed it must be dealt with. Whatever it takes – because these little ones need us to take care of ourselves as much as we do them. We are their biggest advocates!
Thano you fo ryour insightful words of someone ‘who has surely been there”.
Thank you. I really needed to read this today. My son has had T1 for almost 7 years now and 99% of the time I am positive but yesterday I had that “1% Moment” and had a total melt down. I needed to read this to bring me back on track. Thanks again!
In it together. Also remember THAT NONE OF THIS is the fault of either of you…..it is diabetes. Period. Hope your weeks shapes up and looks better. Thanks for writing.
Tom, Thanks for writing such a wonderful piece! I was once a child with type 1 diabetes, now I am an adult with type 1 diabetes. I’ve battled through some very bad complications and still do today. I will always remain positive and look forward to the cure. I feel like I’ve lived my life in the “shadows of diabetes” as having an older sibling who also had type 1. Now with my pancreas transplant, I now living in the shadows of diabetes. Not to be fooled here, I’ve also experience type 2 diabetes brought on my pharmaceuticals.
the complications that come from diabetes are very silent, they just kinda creep up on one, so keep your good fight going my friend, We always have hope and reserach!
Thank you Kitty—as always your words of experience are always and in all ways welcomed. Thanks for writing.
I just stumbled upon your site. Thanks for sharing some of my own thoughts. It’s been a year and 8 days (but who’s counting?) since my daughter was diagnosed at the age of 10. She had a “meltdown” the other day and was very emotional, saying we – her parents and older sister – don’t know what it’s like for her. She’s right. We don’t. We have our own worries, but we can’t possibly know what she goes through each day. Thanks for reminding me of that.
We do what we can, when we can. But it is their diabetes at the end of the day. Thank yiou so much for your comments—we are in this together.
thank you for putting into words what is always on my mind. I’m 16 years behind you in experience, but have never thought of my son as anything but a hero. it takes a diabetic to understand a diabetic, and a T1-parent to understand a T1-parent, no crossovers, just HUGE amounts of empathy.
Arohanui, you’re doing it right!
Thank you. My son has T1, almost a year since diagnosis. Like most parents, i have experienced a myriad of emotions, nothing new there…But i have to admit most of time one of the things i have the most difficulty feeling ok with is my optimism. It’s not that i don’t think i should be optimistic, quite the opposite, i feel like i should be less. Does that make sense?? My wee boy has been a pillar of strength, a source of inspiration and a reminder of the the most amazing resilience that exists in children and people in general. He has quite literally taken it in his stride, accepting the insulin injections and blood tests like it is just part of normal everyday life. But it is now, for him, isn’t it, everyday life. That’s more than i could wish for, for him to see this as a daily consideration like brushing your teeth.
The more i think about it, the more i understand and gain confidence from the fact that the things we (as parents) are encouraged to monitor and help our kids understand about their health and body is just good sense. A healthy well balanced diet, check. Regular exercise, check, Taking extra care with teeth cleaning, check. All these things i might have otherwise have been a little lapsed on without his diagnosis. OK yes i would still care what he ate and how much he ran around. But the diabetes has reminded me how important the diet, exercise really are for healthy happy kids. And there is no reason my child can’t be as happy and healthy as any child without diabetes. In fact i might be so bold as to say even happier. He has parents who love him, want to know what they can do to best support him to be the person he wants to be. We are respectful of his needs, respectful of Diabetes and hopeful and full of optimism for the future.
Let it be known i would sell my own kidney to have a cure for diabetes. And i would happily trade places, but speaking realistically (as i am sure the first suggestion is illegal and the second impossible) i want to remain as open minded about this as possible and my refusal to dwell on the negative will remain. PErhaps this is avoidance, naivety or plain ignorance, but all i can say is that I am just so proud to see him handle this challenge to his health. I want him to continue to enjoy confidence and security in the knowledge that we, his parents have his back. I believe he draws on our feelings, which is why the optimism is important. It’s catching.
I think only a parent (of a type one) can even begin to understand what it is like for us. I know my parents had a hard time when both me and my brother we diagnosed, but it sounds like you are doing the best you can to understand this disease and that is really the best you can do. It sucks, but hey, there is nothing that can be done (yet) so we can’t get too down about it!
No we cannot get too down and surely must stay positive. Mine was but a reminder that it impacts us but, until such time taht a cure arrives, it is with them every second. Thanks for writing.
Your honesty and love are beautiful and I thank you for it. I got T1d when I was 7yo. You are right, people without T1 don’t know what we go through. But this thing I learned loud and clear in my life: it doesn’t have to be miserable, it can be great. Especially now. When I got diabetes my father was feeling, “Okay, if I can give my son a few decades of a good life, I’m lucky and I’ll do my best.” And this hurt him at his very core. Now, the view is, “What can we do for you to live a good and healthy life.” And this is the right mind set. Trust me. You will love a chapter in my book GOOD LIKE THIS where Paul, the hero w/T1d, talks to a group of children with diabetes. Your child(children) can and will have a great life. This is a blog I wrote about when I got diabetes http://www.peterarpesella.com/blog/mumps-pancreatitis-mayhem/