Comments on: A Simple Question

By: Type 1 Tuesday 02.23.10

Type 1 Tuesday 02.23.10 — Tue, 23 Feb 2010 06:04:36 +0000

[...] of Without Envy: A Simple Question (Do things gets better as time goes by, or just [...]

By: Heidi

Heidi — Fri, 19 Feb 2010 05:28:27 +0000

Steve – Any parent of a child with diabetes has been in your shoes, has faced answering this question, and has likely come up with the same answers. I am one of those parents. I also happen to be the daughter of a person who has lived with type 1 diabetes for 54 years. My father was diagnosed in 1955 in a day and age when he was told he would not live to see 21. He is now 65 and is happy, healthy, successful and a beacon of hope for my 11 year old daughter who has lived with diabetes for almost 8 years.

While I hold onto the hope that my father’s health and longevity brings me, I still experience those days when doubt taps on my shoulder and reminds me of what pitfalls might be in store for my daughter. Words don’t adequately describe what goes through a parent’s head when trying to hope for the best, but acknowledge that the worst is a possibility. Keep fighting the good fight. I’d like to say it gets better, but you already know about that. We do get better at adapting and dealing. We get better at acknowledging that we can’t answer all the questions, even those that should seem to have an easy answer. But eventually we make peace with that and our kids are stronger for it. Hang in there.

By: Tammy

Tammy — Thu, 18 Feb 2010 23:33:36 +0000

I am so glad I found your blog (via Sixuntilme). As a parent of a newly diagnoedt Type 1 eight year old daughter it is a comfort to read the words of others in the same boat-just knowing that the things that cross my mind are on the minds of other parents is a tremendous comfort.

This “new normal” of our family is a private battle shared by so many other families-and it is nice to remember that none of us are alone in it. My best to you and yours.

By: michele

michele — Thu, 18 Feb 2010 20:41:05 +0000

Steve, if you haven’t found it already I strongly recommend the dlife site. There’s a board there where people are posting how long they’ve been diagnosed, and God bless him, one man was diagnosed over 50 years ago and has no complications. That’s the one stat I hold on to. My 9yo was diagnosed in July so you’re only a few months behind us. The only piece of advice I have is to watch out for what we’ve called the sudden anger phase. About 5 months in, my seemingly well adjusted kid started lashing out at everything for no reason. After a a week or so of this, we called the social worker who’s only comment was “its about time.” It’s gotten better since he’s switched to the pump, but apparently its a normal reaction that hits a few months after being diagnosed.

By: Tammy

Tammy — Thu, 18 Feb 2010 18:06:12 +0000

Hi Steve,
I just wanted to give you a real life “statistic”. I was diagnosed @ 13 years old, back before diabetes was managed as well as it is now. I was told I would have complications 10-15 years into my D-life. Next month will mark my 21st year with Type 1 and I am free of any complications. I have done my best, along with my parents, to control this disease (still hate that word) and haven’t always managed it well. But I am perfectly content being my own statistic. Sometimes all those statisticians would just like for us to see things their way.Take joy in those in the DOC that prove those stats wrong.

By: Jeff Feuer

Jeff Feuer — Thu, 18 Feb 2010 16:33:25 +0000

Thank you, Steve, for your blog. I just discovered it via Kerry Sparling’s blog, sixuntilme.com. Some great writing, I will read every new post. Thanks again!

By: Penny

Penny — Thu, 18 Feb 2010 16:32:10 +0000

HI Steve,
Thank you for this post. I feel this too, the unending wavering between ‘Yeah, we’re getting better’ to saying under my breath ‘Well, not so much, no, well, not really at all.’ I say one thing to people who ask and the other to myself, who feels at times we are ever inching closer to complications, no matter how tightly we control this disease in our daughters.
My daughter was only 6 when she was diagnosed. It’s been over a year now. By the time she is a young woman, say, 30, she will have had Type 1 for close to 25 years. Yes, I see woman like Kerri out there, Kelly out there, who are rockin’ their lives with Type 1. I hold onto them as my hope and my guiding light that it will all work out. But I also know reality of it not working out and there are young women out there who don’t fare so well. It scares me at the same time it propels me onward. Does that make any sense? It’s such strange emotions to be feeling all the time.

Thank you for your blog. I am glad to hear your voice in this DOC.
Penny

By: Michael Hoskins

Michael Hoskins — Thu, 18 Feb 2010 16:07:56 +0000

Steve: Thank you for sharing your stories with this ever-growing Diabetes Online Community. While I am not a parent of any child, I am a 31-year-old Type 1 who was diagnosed at age 5 and my wife and I are wanting to start a family in the coming years. Passing along this disease that I’ve lived with for 26 years – one that my own mom has lived with since her diagnosis at age 5 in 1958 – is a great fear of mine. But, I do take comfort in the current research, work the JDRF is doing, and simply this online community that connects us all. I echo what Bernard says in that a cure does seem more possible today than ever from my memory. In the meantime, this online community and resources such as TuDiabetes can help connect us all and deal with this, whether we’re newly-diagnosed or more of a “veteran.” It’s ongoing and often frustrating, but the hope can be found in so many different ways and places in seeing that we have the tools to manage this. We can live lives that are just as full, productive, successful, and fulfilling as anyone who isn’t diabetic. And our lives can inspire others and fuel the advocacy to keep pushing for a cure. That’s what helps get me through the days. I’ll look forward to reading your posts, keeping in touch, and sharing the D-O-C space with your family.

By: Patricia

Patricia — Wed, 17 Feb 2010 19:08:14 +0000

Hello steve

It’s true that the stats are terrifying. But these really do seem to be taken from people who are either long term undiagnosed type 2 or type 1 folks who have had to cope with much less medical advancement…

I do not believe that it’s accurate to talk about significantly shorter and dreadful lives when looking at the current situation; however, what does haunt me are the facts that there is much about genetic predispositions to complications we do not understand, some of which pays little heed to good control. The other fact I know is that there are teens with type 1 who suffer already from vision and neurogical problems – not from outrageously bad control, but from not ideal control. For some, that’s all it takes.

Beyond this tho there is the emotional stuff. And at heart, the real answer to your sister’s question is No. Things get more manageable and less traumatic. But dealing with it is relentless, heartbreaking and frightening. Not every second of every day- of course- but at no real point are things better. Dealable, yes. Okay by me, no!

Thanks for the rawness of the post. I know where you are coming from!

By: Scott

Scott — Wed, 17 Feb 2010 16:15:35 +0000

40 years ago, I was a 7-year old newly diagnosed diabetic. Over the years I have learned that yesterday is over, learn something from it. Tomorrow will get here, but until it does, I can’t do much about it. If I do my best today, then my future will be the best it I can make it be.

I think you’ll do just fine