I've been trying to find a good video...or writings...of 'what its like'. We are newly diagnosed, so I am getting this question all the time - many friends and family have an expectation which is totally incorrect (it'll get stable soon, etc.). I thought maybe a good idea to start a thread here to collect some thoughts that could be shared. I have a hard time putting things down in words. Simply, I would say that on the one hand, it takes a lot of work - testing, feeding, checking at night, etc. From a deeper perspective, I feel very down when I think 10 or 20 years down the road - nasty complications - whereas pre-diagnosis, I was very hopeful and excited about the future. Often times its overwhelming to look at the child you love so deeply and imagine future complications.
I am sorry,,what question is it that you are being asked? Not sure I I got it right. There is very few people that I go into detail with the depth that type 1diabetes has on our lives. I find that letting the hard truth comeuppance in normal conversation the most impact full with those that actually care I mean I try to inform others of the basics, that it is not just about food or food choices, but also about activety levels, being happy or sad, stressed, or growing. The thing that I have done more often that has gotten that, omg I had no idea ! I show a person what 1unit of insulin is or show them a whole days worth of insulin is. This I feel putts it is perspective on how difficult it can be to get everything just right.
At one time there was a post about a documentary on here about a child with diabetes. I never saw it and did a quick search and did not find the name. Cheating destiny is a great book about the history of insulin written by a man who is a type one and his child was dx as he was writing the book. It may be of interest. Care of type one diabetes is so much more manageable than it was 15 or 30 yrs ago. It still scares the heck out of me but as the parent we hope to give our kids the skills and opportunities to be successful in life and now managing diabetes. I think a lot of friends, family, or whoever don't get the day to day grind. Even in time the parent is leading the way in care with the medical time. Good luck. I wasted a lot of time and worries about what would happen to my son as an adult. I still have a short pity party every once in awhile. But I realize I need to take this ride a day at a time.
It's very different for people at every stage, and it will be different for you in a few months too so I wouldn't get too hung up on trying to explain to anyone just yet what you feel, unless you really feel the need. Because there are just very few that will actually understand. They ask, but they don't really want to know. But, in a practical sense, to me the early days were like when I brought home my first baby from the hospital. You sort of stand there and think, "now what?" and you just have no idea what to do next. You don't know where to sit, when to eat, when to take a shower, how much noise you should make. After a few months it sort of becomes routine. The work load isn't less, and certainly it's a more happy experience, but you eventually just learn to incorporate a baby into your life. That's really how diabetes is for me. It just becomes part of our lives. I've also come to think of it as a big ugly sofa that we've hypothetically inherited and we can't get rid of, and must just life with, no matter what. We hate it, but we've made peace with it and we just decorate around it and when guests come over and see it we just say, "oh that's just the ugly sofa, it's really not a big deal, we sometimes forget it's there. "
I like this, that thing that as much as you want to give it away you just cant and try your best to have it live in your space not the other way around.
For friends and family that ask, I think just describing the routine and work involved is sufficient. No one will truly "get" what you and your family are going through unless they're going through it too. I hear you. I was very sad the first couple months. Very. Then over time it waned. I still occasionally get sad, but the severity and frequency are way down. And I expect this trend to continue. As for your child's future, why convince yourself that your child will have complications? The statistics are certainly on your side today and medical/technology improvements are inevitable. 3 years from now my 13 year old son will have a CGM that continuously transmits his BG numbers to me via his smart phone. 8 years from now my son will be heading off to college sporting a closed loop pump. And 15 years from now, my son will manage his diabetes simply by giving himself a shot every few days. I think my above expectations are more reasonable than not, plus it beats focusing on complications. There is absolutely no reason for you not be "very hopeful and excited about the future". Take care.
If this was what I thought about all the time, I'd be soo miserable. You can't think like that. The outlook for kids with diabetes is great. Many people have lived decades upon decades with the disease, being diagnosed when technology was not near where it is today. Those people are fine, your child will be too. You just have to stress the importance of doing things right- making good food choices, counting carbs, making sure not to forget to take insulin when you eat, etc. If you maintain tight (as tight as you can get) BG control, there should be minimal, if any complications at all. The way I look at it- There are so many worse things out there my daughter could've been diagnosed with- this is what keeps me going. I know that diabetes is manageable an of course it's stressful at times and makes me want to cry but tomorrow is always another day
Maybe you're looking for something like this? http://youtu.be/nFJ1_3qzZxQ But I'll echo what others have said...outside of a very close circle of family, we don't feel the need to explain to others in depth.
So this talks about moms, not dads, but still speaks to the experience of the parent: http://www.ourdiabeticlife.com/2013/05/we-are-d-mothers.html?m=1
http://www.youtube.com/watch?v=BDATgiMwRNA The Type 1 Mom Song "Uploaded on Feb 2, 2008 A candid and humorous look at a day in the life of a family whose children are Type 1 diabetics from the Mom's point of view."
I thought of another blog post that resonated with me, particularly if you start about halfway down at the line that says "Truth." www.theprincessandthepump.com/2013/04/at-least-its-not.html
I am an adult (age 40) who has had T1D for 35 years. I was parented with more vigor and enthusiasm than care and concern. Our family doesn't do pity, and even as a small child I didn't want it. I got smacked regularly, and was expected to work and play hard, and do well at school. I did, no excuses. Might seem brutal, but as a not terribly sensitive kid, it worked well for me. I have a useful career as a retrieval doctor, and am planning on going part time soon, not for health reasons - I am very healthy, but so I have more time to travel and "play" (and maybe teach - still not decided on that one). My life is, quite frankly, pretty damn fabulous. Don't be afraid for your children's future, kids with D can do almost everything (still not allowed to join the military or get a class A pilot licence).
It just becomes part of your life. I did not get sad at first. I grieved the loss of a normal life for my son in bits and pieces as things came up. Zach has some behavior issues as well and it all plays into our life experience. When I get the "I'm so sorry" I tell that there are children with way worse issues than diabetes. My child has a manageable (somewhat) chronic disease. We embrace it, we educate others, we educate ourselves and we go on with our lives. There is not much that we can't do. We are blessed with good insurance and live in an area where there are fabulous doctors. I will say that it has brought us closer as a family. My husband and I have become a formidable force for advocating for our son. Our oldest understands and he and his brother look out for each other (the older one has high functioning austistic tendencies). You will figure out a plan for you and your family. Share what you want with others. Hang in there!!!!!
That blog post was great, but I agree with the others, people don't really want to know the details. It is great to have this forum where people DO get it, but otherwise, you just deal with it. There really is no reason to dwell on the possible complications, the tools we have now can and will help to prevent them. My son was diagnosed close to 20 years ago and my daughter over 12 years ago. No complications at all and they both have great lives.
My daughter came back from her first year at college saying that life with T1D was in the major hassle category. The next year she came back saying it's not such a big deal. She does everything...just plans a bit better for the various contingencies! No one's future is guaranteed! The healthy kid can get sick and the kid with a chronic disease can go on to do great things...no way to predict. Bad things happen to good people etc.! Be optimistic! The alternative sucks!
