Since we have diabetes in the family, my husband and I have decided to take our two children, ages 4 and 9, to the TrialNet event here in San Diego tomorrow, where they will be screened for the antibodies responsible for the development of type 1. Not only will we be contributing to a very important study on how to prevent, delay and reverse the progression of type 1 diabetes, we will be finding out some critical information on our own kids' likelihood to develop the disease.But I'm petrified.
It's not logical, I know ... but as a mother I am terrified to find out whether one of my beautiful children has the markers that mean they will develop type 1 diabetes in the next 5 or so years. Sometimes the fear takes over rational thought... the idea of such little people having to deal with this disease on an hourly basis makes me want to weep. And I know that my husband feels the same way... and even moreso, because if one of our kids does test positive, then somehow he feels it is "his fault", since his genes are the ones bringing diabetes into their lives...
However, my husband and I are choosing not to stay in the fear, not to bury our heads in the sand, thinking that not knowing is better than knowing. Five years ago perhaps - when there wasn't anything out there to DO with the knowledge ... then yes, we would have had a reason to avoid the information. But now, with the advances in research and the clinical trials out there that are helping if not to completely prevent the onset of type 1, to postpone it by a number of years, we have no excuse not to do this.
And so it is time to face the fear ... to take the plunge. Hopefully our children will be one of the 96% of family members of people with type 1 who do not test positive for the antibodies (96 people out of 100 test negative), and all this fear will be a moot point.
But if they do test positive, or one of them does, we will face it the same way that we faced my husband's original diagnosis 15 years ago - together, with strength, and with positive action.
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On a side note: we got a letter today from the TrialNet team that my son Finian's test results came back NEGATIVE for the antibodies. Such great relief! I don't think I realized how much anxiety I was holding onto around this. Tony and are very happy - of course we recognize that this doesn't mean Finn could never develop type 1, it just means that his risk isn't any higher than the general population. A great, wonderful thing. :)
ReplyDeletep.s., our 4-year old daughter Cesca didn't end up getting tested unfortunately... her "hell no I won't go" response to the blood draw took her out of the running. We still plan to get her tested however, just under calmer circumstances. We know it's important.
Hi Ashley,
ReplyDeleteI was wondering if you accepted any guest posting on your site. I couldn’t manage to find your email on the site. If you could get a hold of me at jeff@drugwatch.com, I would greatly appreciate it!
Thanks,
-Jeff
Hey Ashley,
ReplyDeleteI have a fiance that has Type 1 diabetes. She recently has made comments about me not knowing enough about the disease. Over the past few years she has only had 2 bad lows. But most of the time is pretty good at hiding it. Every time I try to talk about it with her she never wants to talk about it and shuts down the conversation. I recently started googling to try to attain all the info I can. Your blog is great! I just wanted to ask, and this probably comes across as naive. But do people with diabetes have a hard time discussing how it makes them feel, and down play the seriousness of a bad episode? What is your experience? And what is the best way for me to get her to open up and communicate, so I can be a better a spouse?
Thank you
Ryan
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Ryan,
ReplyDeleteI am sorry for taking so long to respond to your comment!
I can appreciate what you wrote about your fiance having a hard time opening up about her lows. In my mind it honestly just depends on the person, whether or not they are comfortable sharing the details of their experience. Some people who have had type 1 a long time and are comfortable with it (or are even advocates around it), are probably more likely to be honest with how serious or how scared they may feel over any given episode. But maybe not.
In my experience with my husband, his diabetes has never been anything he's wanted to "broadcast", although over the 15 years he's had it now, he has gotten more comfortable with people knowing. However, I also have seen him try to downplay the seriousness of a bad low, perhaps because he doesn't want me to "freak out" (which I don't do anymore), or he doesn't want to scare me ... or himself ... and just wants to get through it and have it be over. Unfortunately I also think there is a shame factor at play, which of course I wish there wasn't, but that's a tough one to reason out of someone.
I think diabetes is such an integral part of the fabric of Tony's being that he doesn't want to dwell on it, or think more about it than he has to (which of course is every hour of every day), and I have to remember that. I don't dwell on it with him either, but try to respect the room he needs to deal with it. As a couple however, it is important to be on the same page with what constitutes a "bad" episode, and what you're each willing to do during the moment. It will help to avoid conflict, which is the last thing anyone needs when they are trying to recover from a low (and when we are trying to re-establish our emotional footing).
I hope this helps. Touch base any time!
Ashley
Hi,
ReplyDeleteMy name is Aaron Capp I have written several cookbooks for diabetics. But what I would like you to help me promote the writing an new book call "Fighting Kids Type 1 Diabetes" The book is about helping parents cope with Type 1 diabetes as well as looking for ways to help prevent it. 60% of the profits from the book will be for diabetic research the other 40% will be for production and promotion of the book. If you promote this book on your blog I would be happy to acknowledge your efforts in the book. You will find more information at: http://aaroncapp.com/fighting-diabetes/
Hope You Have a Great Day
Aaron Capp